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Mast Cell Activation Syndrome Madness

At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following:

  • MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders).
  • Women make up the majority of patients with MCAS.
  • Symptoms are caused by having too much histamine in one’s system and can affect almost any part of the body (see comprehensive list below).
  • MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree).
  • It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people.

I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others.

Mast cells are innate immune cells that play a role in defending the body against bacteria, viruses, and parasites, but are best known for their participation in the allergic response. When mast cells degranulate, or burst open, histamine and other chemicals are released, leading to symptoms which we associate with allergies, including having a runny nose, wheezing, hives, etc. Most of us are familiar with the antihistamine drugs that are used to treat allergic symptoms, such as Claritin, Allergra, and Zrytec. Although these medications do not prevent mast cells from releasing histamine, they prevent symptoms by blocking histamine receptors.

In mast cell activation syndrome (also known as mast cell activation disorder, or MCAD), mast cells have excessive degranulation, release too much histamine, and adverse symptoms develop. Symptoms can vary from person to person and will often become worse in the same person with time. Some patients will experience only one or two symptoms from having too much histamine floating around, and other patients will experience many, many symptoms. Although urticaria (hives) is the classic symptom associated with mast cell degranulation, in many cases patients with MCAS do not have urticaria or any skin findings. I have never had hives and the only skin symptom that I get from MCAS is facial flushing from time to time.

According to the Mastocytosis Society Canada’s website, the most common symptoms of MCAS include the following:

  • Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption* (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
  • Low blood pressure*
  • Fatigue*
  • Wheezing*
  • Itching, flushing*, hives
  • Episodes of fainting or dizziness
  • Bone pain*
  • Cognitive impairment (brain fog)*
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart*
  • Sensitivity to sunlight

* = symptoms that I have personally experienced as a result of MCAS. I saw several different subspecialists before we were able to piece all of these symptoms together.

Common triggers for mast cell degranulation in those of us with MCAS include the following:

  • insect stings
  • pain medications such as NSAIDs and narcotics
  • foods and drinks that are high in histamine or are known to trigger histamine release
  • extreme temperatures, both hot and cold
  • exercise
  • strong scents including perfumes and chemicals
  • friction, pressure, or vibration on the skin
  • emotional and physical stress

At this point, my only known triggers for MCAS are high histamine foods and foods that are histamine-releasing, including fermented foods and foods/drinks that have added sulfites. Please see my previous post “Celiac Disease and Multiple Food Intolerances” from July 2013 for more details on food triggers and high histamine foods. Since beginning treatment for MCAS late last summer, the other food intolerances that I had attributed to my celiac disease have markedly improved. My sulfite allergy/intolerance also appears to have been as result of untreated MCAS (see link).

The first case reports of MCAS were just published in the medical journals in 2007 or 2008, so in most cases, the only doctors who have learned about MCAS during medical school are the really young ones. Systemic mastocytosis (SM) is a well-known, very serious mast cell disease in which there are too many mast cells in the body that invade into other parts of the body, including the bone marrow. In MCAS patients the numbers of mast cells are normal (this is what differentiates it from SM) but the mast cells that are present are overly active and degranulate much more often than they should. SM and MCAS share a lot of the same symptoms but MCAS is on a milder scale.

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

  1. Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
  2. Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
  3. Plasma prostaglandin D2 (PGD2) and heparin levels.
  4. Chilled 24 hour urine sample for PGD2 and methylhistamine.

In many cases of MCAS the baseline tryptase and histamine levels can be normal, so it is important for a patient to have these labs done two times (both at baseline and when symptomatic). Both blood and urine levels of histamine and tryptase should rise after mast cells are triggered. Therefore, MCAS cannot be ruled out based on one set of normal labs. This differs from many other diseases that can be ruled out if an initial set of lab tests are normal. In my case I had abnormally high urine prostaglandin levels on two separate occasions and my tryptase and histamine levels rose when I was symptomatic (both were totally normal at baseline when I did not have any symptoms going on).

Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium. I initially had a difficult time finding an H1-blocking antihistamine that worked for me, as most contain cornstarch and other sulfited ingredients which are triggers for my mast cells to degranulate. But I have recently done very well taking a compounded sulfite-free form of generic Claritin twice a day. I have also done my best to follow a low-histamine diet, and I believe that this has made the biggest difference in my symptoms improving. Yasmina, the Low Histamine Chef, who also has MCAS, has been a wonderful resource for learning about the low-histamine diet and recipes. If I keep my overall histamine intake low, I find that I can indulge in an occasional glass of wine or enjoy a small serving of aged cheese without starting to wheeze like I used to in the past.

Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS.  Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally “glutened.” DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree. I guess that time will tell…In the meantime, if you are experiencing symptoms that seem puzzling, involve multiple systems of your body, and popped up out of the blue, I encourage you to look into MCAS as a possibility and discuss your symptoms with your doctor.

There are some great references on the internet for learning about mast cell activation syndrome and histamine intolerance, including the following:

1. Mastocytosis and Mast Cell Disorders from the Mastocytosis Society Canada’s website (www.mastocytosis.ca). Accessed Jan. 3, 2014.

2. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin, MD, chapter 6 in the book Mast Cells edited by David B. Murray, 2013.

3. Histamine Intolerance on Allergy UK website (www.allergyuk.org). Accessed Jan. 3, 2014.

4. Mast cell activation syndrome: a newly recognized disorder with systemic clinical manifestations.  Hamilton, M., Hornick, J., Akin, C., et al.  J Allergy Clin Immunol. 2011. 128 (1): 147-152.

5. Mast Cell Activation Syndrome: A Review.  Frieri, M., Patel, R., Celestin, J.  Curr Allergy Asthma Rep. 2013. 13: 27-32.

6. Histamine Intolerance by Dr. Janice Joneja on webpage www.foodsmatter.com. Accessed Jan. 3, 2014.

7. Expanding spectrum of mast cell activation disorders: monoclonal and idiopathic mast cell activation syndromes. Picard, M., Giavina-Bianchi, P., Mezzano, V., et al.  Clinical Therapeutics. 2013. 35(5): 548-562.

Dr. Afrin’s chapter on MCAS for physicians (#2 above) is the most comprehensive document that I have come across regarding all that is known about MCAS.

Lastly, I would like to thank my friend Harriet for all of her advice and help on this journey. If it was not for her assistance, I would probably still be wheezing and flushing with chronic brain fog and irritable bowel syndrome despite being strictly gluten free.

Happy New Year and thank you for reading!

180 thoughts on “Mast Cell Activation Syndrome Madness

    1. Jess Post author

      Hi Diana,
      You are welcome. What I forgot to mention in my post is that I think that when many of us go gluten free that we inadvertently increase our intake of high histamine foods and that this can then trigger the MCAS cascade to start (not evidenced based, but just a thought as I’ve tried to figure out why this happened to me and, it seems, to so many others). I’m also wondering, with time, if there ends up being an autoimmune explanation. Either way, I am hoping that my post will increase awareness and perhaps lead to at least a few others being diagnosed and treated.
      I hope you are feeling well. Happy New Year to you and your family!
      Jess

    2. debra

      DIana thanks for your page – Cromolyn sodium works!!!!! I started it and immediately feel like i was reborn … It was thought i had a systemic nickel allergy but on my clearly restricted diet i was still getting the drugged sleepiness spells and brain fog attacks … with this med I feel clear and not afraid to eat!

      1. Britt

        Hi Debra
        When I read what you wrote her, I got so happy to read that someone else have the same as me. ( not happy to hear you are sick, but to find someone with the same as me) I have had this problem for a long time, but no doctor can answer me what’s wrong. I have had so many tests and feel they wont listen to me anymore, and just look at me funny, when I tell them hove I have it, after I eat. This is the first time I read this, just like I would write it myself. When you write ” drugged sleepiness spells and brain fog attacks … with this med I feel clear and not afraid to eat!” I feel just the same, and it takes about 3 hours before the brain fog and sleepiness goes away. I am wondering what the medicine you take is Cromolyn sodium ? I have never heard about it. Is it a medicine I can get with the doctor ? Wonderful to read that you are so much better. It would be wonderful if I also could get some help for this problem, that I have almost every day. I have almost stop eating. I used to love cooking and making all kinds of food. No I don’t even make dinner. I just eat something, because I have to. Love to hear from you, hope you are still feeling good. :-)

    3. Shelly Fisher

      I have two questions instead of a reply. I hope that’s alright. I have Celiac and am 98% sure that I also have Mastocytosis/MCAS. Due to a recent rash, I’m on an H1/H2 inhibitor. I have an appointment with a specialist in one month. My questions are: Should I stay away from the medicine and also not incorporate a low histamine diet until I see the doctor? (With Celiac I had to stay on gluten until the “gold standard” test). Is there a suggestion for a MCAS versed doctor in Colorado?
      Thanks so much!! Your page is extremely helpful and it’s nice to know that you aren’t the only person going through this. :)

    4. Megan

      This is all so very interesting. I was diagnosed with a salicylate sensitivity about 3 years ago. Despite being on Singulair, Allegra, and Zantac for my symptoms, I still suffer daily from allergic reactions. All of the symptoms basically that you listed I get with this salicylate sensitivity. It makes me wonder if there’s more to it than just a food intolerance. Thank you for the post!

    5. Greg

      You may want to research guduchi, skullcap, baicalin, and quercitin. They stabilize mast cells. Inflammation of the GI can produce mast cells. Most of us have some inflammation of the GI just because we are Celiac. I think that might be what is going on with me; horrible air born allergies. . Most mast cells are produced in the GI track. Anyway, I think guduchi works best for me.
      Like you I was taking probiotics as they can down regulate inflammation and thus mast cells. With the new news on vitamins and probiotics with half containing gluten while labeled GF, I might just forgo vitamins and probiotics and just buy whole herbs. I think I will also up my soluble fiber, which produces buteric acid which will down regulate inflammation. I also think I will get my probiotics through real food ferments. I am starting to become more and more convinced fiber rich foods are the way to go to halt this circle of inflammation we are in. I am also starting to think the supplements I have been taking have done me no favors.

    6. Niesha

      Hi there I have a friend in bc canada who I’m pretty positive has mast cell activation. Does anyone know of doctors or specialists in canada?

      Thank you

      1. keri

        Hi I am looking for a Dr in Canada also who specialise in it. I found out today I have to pay $180.00 to have the blood test done by lifelabs here in B.C. My Dr. Does not know much about any of this stuff and I find it very frustrating. I would appreciate any information for Canadian Doctors in B.C.

    7. Hollyp

      People are most definitely born with it. My father, myself and my best friends little girl were all born with MCAS and had all the symptoms from birth throughout childhood and into adulthood.

  1. Annette

    Thanks for this post! I was diagnosed with celiac in July 2013 and have been on a very strict diet since then (no gluten, grains, dairy, legumes, or soy). I am highly frustrated because many of my symptoms have not subsided and, to top it off, I seem to be developing more intolerances as the months go on. It’s overwhelming to think about cutting out additional foods, but it is nice to have a possible explanation! Now to find a doctor that is knowledgeable about this and willing to investigate!

    1. Jess Post author

      Hi Annette,
      It is definitely not an easy road to be on (when I initially went GF in 2010 I was so excited to be able to still eat cheese and chocolate and to be able to drink wine, and now I am only able to in very tiny amounts).
      I hope that you can find some answers for your food intolerances. The Mastocytosis Society has published a list of Mast Cell clinics in the U.S. You can find it here: http://tmsforacure.org/patients/research_centers_1.php. Some of the centers evaluate only for systemic mastocytosis and others evaluate and treat mast cell activation syndrome as well. In my case my doctor and I were able to work with one of doctors at one of the mast cell centers via email so I was able to have my testing and diagnosis done locally, which was really helpful. I wish you the best and thank you for stopping by! Please let me know if you have any questions!
      Jess

  2. Shirley Katz

    I have been gluten intolerant and avoid all gluten for over 22 years. Five years ago I developed severe anaphylaxis to the Cold (CIU). I was referred to an Allergy Specialist at St. Michael’s Hospital in Toronto. He took 16 vials of blood. I wonder if he tested for this…perhaps I should find out.

    1. Jess Post author

      Hi Shirley,
      This was such a new diagnosis 5 years ago that chances are you were not tested for it. If you are still working with an allergist, it may be something to look into. I also forgot to put it in my original post, but I strongly feel that taking a probiotic daily has helped with both my MCAS and Celiac symptoms during the last few months.
      I wish you well. Thanks for stopping by my page!
      Jess

  3. IrishHeart

    Jess,
    As you know, I too suffer from this dreadful celiac tag-along and I am grateful that you continue to get the word out about this condition. Thanks for writing this comprehensive article. I have tried explaining it on celiac.com, posting links to various explanations, but now, I can just link to yours! :)
    My GI doc was surprised when I mentioned it to him last summer– as I am getting better and I am strictly GF—yet I still have some weird symptoms that “feel like a glutening”. But he said histamine intolerance made total sense because DAO is produced in the gut lining. He suggested total abstinence from high histamine foods for 6-9 months and that I could reintroduce foods to find a tolerable level. I hope he’s right. It’s been 6 months and I do try some HH things like shellfish, bacon and champagne, and it bites me on the behind every time. Dang! Not ready for full doses yet.
    Fortunately, I do not have the dangerous anaplyaxis like my friend Lisa does, but I do get some pretty bad symptoms if I get an accumulation in my system. Burning skin and bones, facial flushing,heart palpitations, extreme fatigue, sores on my face and scalp, bowel issues just for starters, ugh. I am still figuring it out.
    The good news is, the multiple chemical sensitivities I had are greatly reduced and I can actually wear a dab of perfume once more without vomiting! whoohoo! :)
    When I was very ill before DX, I could not go out in the sun anymore because I felt like my skin was ablaze–which was perplexing as I was always outside and had a high tolerance for sun and heat.

    Now, 3 years later, I can sit in the sunshine on the beach once more without those issues.
    Healing happens!

    Hang in there and I look forward to seeing you down here in the Spring!
    G.

    1. Jess Post author

      Hi Irish Heart,
      It’s nice to see you on here. Thanks for sharing your story and also reminding us that healing can and does happen!
      There is so much more information that I wanted to put in this article, but left out as I didn’t want it to be too long and difficult for people to read. Besides following a low-histamine diet and taking Claritin two times a day I also attribute my improvement in MCAS symptoms to taking a probiotic (I believe this has led to overall better gut health that in return has helped my celiac and MCAS symptoms to lessen) as well as quercetin 1x/day…I’m pretty sure we have discussed this before, but I am reiterating it so that others may see what I am writing in my comments!
      Looking forward to meeting you in April!
      Jess

      1. IrishHeart

        Well, as you know, I am the “probiotics pusher” on celiac.com. –and to all I meet LOL
        so, I agree!!
        Thanks again for letting me link to this wonderful article on there.
        It helps in ways you may not know just yet but you will.
        Sometimes, I get a PM from someone a YEAR after I have posted something and she may start with
        ” I happened to read your post of a year ago and I wanted to ask….”

        We may never know who we reach, but putting the info out there is the first step.
        thanks, hon!
        G

        1. Jess Post author

          Hi Andrea,
          I take one capsule of Florajen 3 each night. It contains Lactobacillus and 2 species of Bifidobacterium. It is OTC and is gluten free.
          Jess

      2. Carri

        Hello,
        Before i realized my diagnosis, i initiated a probiotic, which appeared to trigger a dramatic episode. does this seem likely, or just coincidental? Thank you

        1. Jess Post author

          Hi Carri,
          I do not know. I am not aware of actual probiotics being triggers for mast cells to release histamine, but perhaps they are a trigger for you?
          Back in the beginning I reacted to fillers in a lot of pills and supplements (ie. cornstarch) so perhaps this may have contributed. I had to have everything compounded. Now that my MCAS has been under control for a while I’ve been able to transition back to some over-the-counter medications and other supplements. I hope this helps.
          Jess

          1. Jane

            Yes, they can be . Read up on this on Seeking Health Solutions supplement website. The only two safe probiotics are Saccharomyces Boulardii or ProBiola Bifido.

        2. Nicole

          Yes – certain strains of probiotics are mast cell degranulators and most people with MCAS have a hard time taking them. The bifido strains are supposed to be the safest for MCAS. Seeking Health makes a bifido probiotic that works for some people.

        1. Jess Post author

          Hi Nitika,
          I take Jarrow 500 mg quercetin capsules which I purchase on Amazon.com. The last time I ordered it, it cost less than $10 for 200 capsules.
          This brand is GF, soy free, and dairy free.
          Does anyone else have a suggestion for a quercetin brand?
          Jess

          1. Deborah

            I take Twin Labs Quercitin plus vita C. I have multiple food and chemical sensitivities and this is one that is clean and I have zero reaction to no matter how much I take.

  4. Charissa M

    I, too have both, along with likely Ehler-Danlos Syndrome and confirmed Postural Tachycardia Syndrome. I recently started treatment for my MCAS (and went GF) and the difference in my life is outstanding. I was very lucky to see a neurologist at the Mayo Clinic in Scottsdale in Arizona who is familiar with Mast Cell and how it often shows with other conditions (including POTS and the hypermobility). Thank you for posting this and for working to spread awareness!

    1. Jess Post author

      Hi Charissa,
      Thanks for taking the time to share your experience. You are very, very fortunate to have a doctor recognize and be able to diagnose and treat you for MCAS. Hopefully, with time, others will have your good fortune. MCAS really helped me to understand why I never felt totally healthy despite being strictly GF after my celiac diagnosis.
      All the best to you!
      Jess

    2. jennifer

      I also have been diagnosed with Celiac, MCAS, POTS, and Ehlers-Danlos. I’m sure they’ll be finding the links soon.

      1. Raf

        Dear Jess, To pull all of these disorders together is so very helpful, thank you! My young daughter, my identical twin sister and I (and probably my son too, waiting on baseline testing) all have EDS and MCAS, with celiac like symptoms, other autoimmunes, and lower levels of various IGG subsets. Many years ago they suspected that my twin had POTS also (chronic fainting) but couldn’t ‘prove’ it. While we still encounter disbelieving doctors who have treated us like we are mentally ill or at the least like hypochondriacs, and even close family members who do not believe that you can go into an anaphylactic reaction just by being near a person who has cat hair on them for example, all of the evidence keeps pointing very clearly back to MCAS. Thank you for helping to raise the awareness!!!! On a side note, many individuals with MCAS (as well as other autoimmunes) are also found to have genetic mutations like MTHFR and COMT. Worth looking into if you are working with a great doctor; knowing about these mutations can really help to pinpoint which meds and supplements may work and which may do more harm than good.

        1. jeannie s

          Hi Raf

          You, your daughter, your sister and your son all stand the extremely strong likelihood of having underlying Lyme Disease, and this is what is causing all of these issues with your immune system. It also sounds like all of you were born with it.

          There are very strong links between Lyme and EDS, and Lyme and MCAS. Also Lyme and POTS. Do not waste your time with an ID doctor or an immunologist. You need to find a competent Lyme specialist, or an LLMD. I would bet good money you are going to find Lyme. Good luck

      2. jeannie s

        Jennifer, you DESPERATELY and URGENTLY need to find a competent Lyme specialist (not an infectious disease doctor) who will evaluate you and diagnose you with Lyme Disease. The list of conditions you just described as having scream Lyme, as the disease wreaks havoc on the immune system. There is a very strong link between MCAS and LYME, as well as POTS and Lyme. Also EDS and Lyme. I am not a doctor, but having suffered many debilitating effects of the disease for three years, and having almost lost my life due to sheer ignorance and incompetence of mainstream medicine, I am very astute to people with undiagnosed Lyme Disease, and you my dear are most definitely one of these people.

    3. Lr

      Can you tell me the neurologist’s name at Mayo Clinic Scottsdale that knows about MCAS? We are having a tough time finding anyone with knowledge!

      1. janine Brown

        His name is Goodman at Mayo, AZ. You will find specialists at Scripps in San Diego, CA also. At Mayo, they will do testing but then you are left on your own to find a doctor.

        1. Beth

          Hi Janine,
          Thanks for posting! Will you please clarify Scripps Clinic or Memorial and the name of a doctor. I found Jess’ wonderful article by researching compounded ketotifen after it was mentioned by a caller to Dr. Nancy Mullan’s Tuesday mthfr call in program. I had asked a question earlier seeking information about a possible connection with MCAS, Interstitial Cystitis and my various Methylation/mthfr genetic snps. I will forward Jess’s article to my internist so we can discuss it next week!
          Thank you all. I am so grateful to Jess and for this community of people seeking a healthier life.
          Beth Ward

    4. jeannie

      I know this was originally written over a year ago, but have you ever been evaluated for Lyme Disease, and/or do you have a Lyme Diagnosis?

      Everything you just wrote you have can be triggered by underlying Lyme Disease. There is a very strong correlation between Lyme and POTS, as well as Lyme and MCAS. Anyone with a combination of POTS and MCAS, especially with EDS added to the list, should most definitely be evaluated for Lyme. And I do not mean by an IDS. I mean by a Lyme specialist, or an LLMD. MCAS research is actually what brought me to this site, as I have been diagnosed with Lyme, but have issues that are not resolving with treatment. Good luck

  5. Tim

    I just wanted to ask you about a constellation of symptons I have had during my lifetime. When I was about 18 years old I developed a case of chronic urticaria. I would get hives all over my body including lips and eyes, so much so that my lips would crack and bleed. The only thing that would prevent the hives would be chlortrimeton, an antihistamine. This lasted for about 15 years. About 6 (I am a 49 year old caucasion male) months ago I developed a peripheral neuropathy. I have numbness and burning in both feet, though the neuropathy at this point is mostly sensory. I had a ttg-IGA test last week and the value was 0.90 which is right on the border between positive and negative. My question is this; I had been on a Gluten free diet for one month prior to the test so I am worried that my numbers were high before. Is it possible for the levels to come after one month of being on a gluten free diet.

    Thanks for your help.

    Tim

    1. Jess Post author

      Hi Tim,
      Thanks for writing. Yes, it is entirely possible that your TTG antibodies can rapidly drop after starting on the GF diet if you have celiac disease. If you are borderline now, I cannot help but assume that your TTG levels were probably abnormally high prior to starting on the GF diet.
      Celiac disease is the 3rd leading cause of a peipheral neuropathy but non celiac gluten sensitivity has also been associated with neurologic symptoms. Living Without Magazine is going to have an excellent article about gluten-related disorders and neurologic symptoms in their spring 2014 issue.
      Jess

    2. Tim

      Hi ,
      Thanks for answering my comment in January. I have since had testing doen by Enterolab in Texas. the result was that I had an abnormally high Fecal Anti-gliadin IgA ( 25 Units (Normal Range is less than 10 Units)) and I have two genes (HLA-DQB1 Allele 1 0201 and HLA-DQB1 Allele 2 0502 ) that predispose me to both celiac diseas and to gluten sensitvity. My question to you is how accurate are the tests performed by this lab.

      Thanks so much

      Tim

      1. Jess Post author

        Hi Tim,
        It’s good to hear from you again.
        I am unable to answer your question because, the last time I checked, Enterolab provides no information to the general public, or its test users, about the sensitivity and specificity of its antibody testing. I am not sure if they do this because they just want to keep the results private v. knowing that there are a lot of false positives (low specificity). If I come across any new information I’ll let you know. The last time I tried to ask a similar company (not Enterolab) for scientific data they told me that I would have to pay for it!
        Jess

  6. Lucente

    Thank you SO much for this post! I had already read about this condition, but it was not until I read your words, did I think it could apply to me: non-celiac gluten sensitive with a celiac son, on a strict gluten free diet, with hives, facial flushing and fragrance and heat intolerance that became better on the diet, but never really disappeared. All the allergy blood tests negative, skin prick test positive to weeds, but I manage to keep the hives away if I take an antihistamine pill. I’ll see if I can get a doctor to run those tests, but I have recently began taking a probiotic and quercetin, let’s see if those alone can help me bypass the antihistamine pill.

    1. Jess Post author

      Hi Lucente,
      Thanks for sharing your experiences. Yes, many of us have found that quercetin and probiotics can be helpful, as well as decreasing the amount of histamine in our diets. At this point I am still needing the antihistamine, but I am not too bothered by it because I usually take one from May thru Sept anyway for seasonal allergies to trees, pollen, and weeds. Fun times, isn’t it?
      We have a pretty good conversation/debate going on over at celiac.com right now about whether or not we should bother with getting tested for MCAS. In my case I opted to because I wanted to have all possible treatments available to me, if I was to need them, and I wanted to be able to say that I definitely had this diagnosis before starting to write about it. For others it may not be quite so necessary to get a firm diagnosis if you are able to get symptoms under control yourself…
      Jess

  7. Therese

    I was diagnosed with MCAS one year ago after developing prolonged flushing (face/neck/chest), tachycardia, weakness, diarrhea, increased vertigo and food intolerances. I had GERD, Irritable Bowel Syndrome and Meniere’s Syndrome as long time diagnoses prior to this. My 24 hour urine for N-methylhistamine was elevated (220) and serum tryptase (baseline) was 8.6. My bone marrow biopsy was normal. The triggers of eating a very low carb high histamine diet combined with a shingles vaccine prompted my symptom flare.
    I started on Allegra, Zyrtec, Zantac, Prevacid, Ketotifen and Cromolyn sodium with a great reduction in the frequency, severity and duration of symptoms. I carry Epi-pens but luckily have not had to use them. I see Dr. Phil Lieberman (Anaphylaxis Specialist in Memphis).
    I follow a gluten free, nut free, dairy free, low histamine/tyramine paleo type diet but still have problems with some foods. Facial flushing and GI distress seem to be my most common symptoms with flares.
    I am so glad that you are posting about the challenges of mast cell disease and it’s management. We need physicians to become educated to consider this as a possible diagnosis for such a broad constellation of symptoms.

    1. Jess Post author

      Hi Therese,
      Thanks so much for sharing your symptoms, treatment, and experience with all who may be reading.
      I agree that awareness of MCAS/MCAD is desperately needed in the medical community as in many cases this disease is best treated with a combination of medications and dietary/lifestyle changes. Let me know if you have any ideas for me to spread the word!
      Jess

  8. Medicalmess

    Hi Jess,

    It’s wonderful to know that as a physician you would take the time to create more awareness about mast cell diseases/disorders. Thank you for starting your site and allowing us to comment.

    I appreciate your willingness to allow us to share what we have learned in our ‘journey’ as well.

    I was diagnosed with dyautonomia in 2010, and MCAS (defined in my medical records as systemic mast cell disease) in 2011, and also POTS in 2011. It took me close to two years, with 21 rejections from physicians, to get the help I needed. It is very common for many of us to take as long as 5 to 10 years before we are diagnosed. It requires a lot of research on the part of the patient and the willingness to be our own best advocate.

    My mast cell meds include: Nexium, Ketotifen, Gastrocrom (cromolyn), Pepcid and Xanax (yes, we have benzodiazepin receptors as well!) I am also on a med called Keppra because of an abnormal EEG which they can’t discern if it is mast cell degranulation in my brain or an actual seizure disorder. At all times, I carry: compounded Prednizone, compounded Xanax, Albuterol inhaler, twin epi pens , a full personal protocol which I have established at 3 local hospitals, a list of daily meds, extra daily meds (because no hospital here has ever heard of cromolyn or ketotifen), a 3 page list of ‘triggers’ and allergies to meds, and a list of my 6 ‘safe’ foods, whenever I leave the house. I was diagnosed at the Medical University of South Carolina by Dr. Afrin and I also see Dr. Castells and Dr. Greenberger at Brigham and Women’s in Boston, MA.

    I spend as much time as I can on NORD (National Organization for Rare Diseases) trying to share my knowledge with those just starting on their journey. We can feel very alone and frightened when our bodies start to do some pretty strange things! So come and join us if you need support or answers to some of your questions. It is a special group to be a part of.

    I think it is really important (with no disrespect intended in any way Jess), that those who do not have a mast cell disease/disorder (or have not yet been diagnosed) with MCAS, MMCAS, ISM, ASM or MCL understand that our symptoms in no way reflect the severity of the disease we have. I am not sure what you meant by MCAS being ‘on a milder scale’, but I feel it’s important that those who are searching for a diagnosis understand that the symptoms we experience are from the activation of our mast cells. In other words how chronically, in what quantity, and what specific powerful chemicals are being released from our mast cells when they degranulate. There are those with MCAS that can go into anaphylaxis 1,2,3 or more time a day. And there are those with ISM who die of other causes, never even knowing they ever had a mast cell disease. So it is very important to take this seriously whether you are diagnosed with MCAS or Mastocytosis.

    Try to remember that it is how ‘hypersensitive’ we are that determines how symptomatic we may be and not the ‘type’ of mast cell disease/disorder we have. So please do not be scared (as many who post are) if your symptoms seem so severe that you think you could not “just” have MCAS and surely it must be SM.
    Although ISM is somewhat rare, some mast cell experts feel that MCAS may be epidemic. So the chances of you having ISM (Indolent Systemic Mastocytosis) are low and having ASM (Agressive Systemic Mastocytocis) are very rare and having MCL (Mast Cell Leukemia) are extremely rare.

    I hope you don’t mind my making the distinction Jess, but I have seen way too many become fearful of what they ‘may’ have that it can send them into a spiral of hopelessness and despair. This is not a disease that we can handle on our own, it is a disease we need to share because there are only a handful of experts who can help us and there are sooo many of us!!

    I would like also like to add a bit to your reference about medications (and diet). Often times when many of us with a mast cell disease react to a medication, as Jess explained above, we need to compound that medication to see if it is the medication itself that is causing us to react. We often find, it is the fillers, dyes, and preservatives in the medications that are what are causing us to become symptomatic. It can be the same for us with foods. It often times is what is IN our meat or eggs or cereal that cause us to react (things like lactose mono-hydrate, sugar substitutes, FD&C blue dyes, or yellow dye no. 5 &6). So it is critical if you are just starting to become symptomatic, to start a daily journal. Write down the foods you eat, when you eat them, the amount of sleep you get, the activity level for that day, what meds you took and how you felt on that day. This helps us to identify patterns of possible ‘triggers’ that we need to eliminate from our diets or our lives.

    Lastly (and I could write forever…sorry) remember, this is a disorder/disease that medications alone will not control. It is critical to define your ‘triggers’ (things that make your mast cells degranulate) and avoid them at all costs. If you take your meds and ‘cheat’, you will be symptomatic. If you are not willing to give up your ‘triggers’ then you will continue to be symptomatic. And when I talk about symptomatic, I mean anything from getting hives, to being itchy, to going into life threatening anaphylaxis. This is a chronic disorder and there is no cure (yet). :)

    Someday I would like to share what I have been working on for the last 2 years with the help of a brand new PCP (who was willing to take my case) to get established in my local ER’s and hospitals to ‘keep safe’. (Did you know they take away your epi’s when you are admitted to a hospital?? They don’t recognize our presentation of anaphylaxis?? They don’t have compounded meds on hand?? And they can’t get ketotifen if you need it!).

    Thank you again Jess, for allowing us to add things we feel are important for possible new mast cell patients to understand.

    Hugs to all, MM

    p.s. According to my niece who is a 2nd year ER resident, this years 2nd year medical students learned about MCAS last year for the first time in one of their texts! Progress!

    1. Jess Post author

      Hi MM,
      Thank you, thank you for sharing your knowledge and experiences with me and with anyone else who is reading this. I am so grateful that I wish that I could reach through the computer and hug you.
      This diagnosis is definitely a life changer, and just now I am preparing for my first major trip overseas since my diagnosis and am trying my best to get everything in order (Epi Pens, medical ID bracelet, compounded meds, “safe” foods and snacks that are also GF, print out of description of what MCAS is, etc).
      You have written so much that I don’t think that I have much to add, except my gratefulness. Also, it is good to know that your niece is actually learning about this in her training. My own allergist was resistant to testing me at first because he said that MCAS was extremely rare and that he had never seen a case of it (because he had never known to actually look for it in his patients!) Much like celiac disease, since I have been diagnosed I see it in patients all of the time!
      All of the best to you and thanks again (thanks also for your private note as well!)
      Jess

      1. Chrissy

        Wow thank you so much for this information.i am in the UK and at the moment suffering extreme daily painful hives from reaction to some injections. 5 months and still having them. I have many other symptoms of mcad too and everything fits together, at last my doctor is sending me for allergy testing (not sure if anything will show up). Here in the UK mcad is not recognised and the allergist I will be seeing, eventually doesn’t know anything about mcad. So I feel somewhat lost. I am already in fexofenadine 180mg and ranitidine 150mg twice daily without much improvement.

    2. Laura

      a list of my 6 ‘safe’ foods
      6 safe foods is way too few, because you would have to eat a lot of those foods and might develop new sensitivities to them.
      I eat a lot of exotic foods. Here’s a list of foods I can eat. I’ve investigated every exotic food I could find, so perhaps you can find some new safe foods on that list.
      Do you react to tiny amounts of the foods you have sensitivities to?
      I do – I probably have celiac disease and as it turned out, I had developed allergies to almost all the foods that I commonly ate. I went through a process of repeated elimination diets and food challenges to find these allergies.
      I’m trying to desensitize myself to some of the foods I’m allergic to, by eating about 10 mg of the food once every 4 days – after taking 10 mg Singulair, 400 mg cromolyn and 15 mg loratadine. After about a month of that, the reaction to a given food (hazy sick feeling) becomes less. But if I introduce a new food, I again have a reaction. So my body’s mechanism for suppressing the reaction seems to be specific to the particular food, so far.
      Do you “rotate” foods – meaning, eating any given food, or foods closely related to it, once every 4 days? I do this, and it’s helped me avoid developing new food allergies. If you take cromolyn before meals generally, that may help prevent new allergies from developing – at least I read it does in mice/rats.
      I’ve developed new allergies to some foods I was carefully rotating – poppyseeds, acorn starch, allspice. That was before I was using cromolyn, though.
      I probably have MCAS – it sounds like the tests are just looking for more than normal mast cell activity in one’s body, whether from hyperactive mast cells or from a localized excess of them.
      It might just be a consequence of allergic inflammation.
      Having a local excess of mast cells might be related to having local allergies – i.e. allergies that don’t result in high levels of specific IgE in the blood, so they don’t appear in the standard allergy testing. I got this idea from a paper Entopy: Local allergy paradign. It seems that if there are many mast cells locally – from chronic allergic inflammation or whatever – they might take up locally produced IgE before it has a chance to get into the blood, resulting in a local allergy.
      My life has been devastated by inhalant allergies. My allergy tests gradually became negative over years, while I was living with my dog – although I was getting sicker and sicker. Slowly I sorted it out, I was chronically exposed to mold and also I had developed a very severe dog allergy, even though my skin and blood allergy tests have become negative! If I’m 50 feet downwind from a car with a dog in it, and a window is open and I get even part of a breath of that air, I have an allergic reaction and get sick for several days. I had to move out of my house into a new mobile home in a no-dogs park, to even begin to be less sick. My dog is in a kennel. I’m trying to desensitize myself to her by eating a tiny amount of a towel that was rubbed on a dog, once every 4 days.

    3. Shelly Fisher

      Hi MM! Thanks so much for your post!

      As stated you said “I spend as much time as I can on NORD (National Organization for Rare Diseases) trying to share my knowledge with those just starting on their journey”

      I am just starting on my journey. I had a rash about two weeks ago and am now on Allegra and Zantac. I have more energy than I’ve had in years, I am not as moody, and my swelling has gone down. My stomach and face aren’t bloated. I’ve lost about six pounds and haven’t even started a regimented low histamine diet. I am pretty positive that I have either MCAS or Mastocytosis.

      My first appointment is on January 12th. For this appointment, what is your suggestion regarding the meds and the low histamine diet? I don’t want the meds to skew the tests results. I asked the nurse and she said it would be fine to stay on them, but I just wanted to double check with someone else in the community. I’m thinking of stopping the meds about a week before the appointment and eating higher histamine about three days before.

      Any thoughts would be greatly appreciated.

      My question

      1. sam

        Hi! I have a big stomach and my face and stomach swell or bloat if I eat bread. The next day especially my face is round!. I do abstein 95% but I’m an emotional eater I’m working through. What are you doing to get these results?

  9. Pingback: Happy Sulfite Intolerance | The Patient Celiac

  10. Laura

    You might be interested in this MCAS primer.
    It’s in powerpoint format, I translated it to pdf.
    It mentions that mast cells may be implicated in “autoimmune enteropathies” (including celiac disease I suppose).
    Also they say that MCAS can cause frequent UTI’s, and Hashimoto’s, problems that I’ve had.
    Perhaps MCAS results mostly from people’s “hidden food allergies”, i.e. food allergies with symptoms that can be masked by the body and may become exposed by an elimination diet/food challenges. I wonder if there’s any reason to think this isn’t the case.
    They mention other treatments for MCAS.

    1. Jess Post author

      Hi Laura,
      Thanks for sharing. Dr. Afrin, the author of the slides you shared, is the specialist who we consulted with during my diagnosis. In my case I really don’t know how long my mast cells were acting up, I suspect for most of my life since I had such strong aversions to most of the foods since childhood and really awful seasonal allergies since adolescence, but I can definitely say that my MCAS symptoms really worsened after going GF for my celiac diagnosis.
      Jess

  11. Laura

    I wonder if Dr. Afrin would have insight into this idea of desensitizing myself by eating small amounts of the food once every 4 days, after taking allergy meds.
    I’m just guessing based on the rotary diet having helped me avoid developing new food allergies. I did develop some new delayed food allergies to foods I was eating once every 4 days That was to some of the more allergenic foods – seeds and nuts. So perhaps a longer interval is needed.

    I had such strong aversions to most of the foods since childhood and really awful seasonal allergies since adolescence, but I can definitely say that my MCAS symptoms really worsened after going GF for my celiac diagnosis.

    This sounds similar to what’s happened with me. My inhalant allergies and delayed food allergies seem to have started when I was 20. I started having weird food reactions – jitteriness, spaciness, tension – after eating certain foods when I was 20. I didn’t find out what was going on until I was 43, in 2003, and did my first elimination diet where I had reactions to food challenges. I had allergies for many years but no specific symptoms so I didn’t know it was allergies.
    In 1999 I got allergy skin testing for the first time. I had 3 allergies.
    Then in 2001 I got allergy skin tests again, and I had 20 allergies! After going GF I had lots of allergies in skin tests, 54 at the peak.
    Also lots of delayed food allergies emerged after elimination diets.
    The body has powerful mechanisms to suppress the food reactions while one is eating gluten – and those mechanisms might reduce the “mast cell activation” in one’s body in general. I used to eat bagels & cheese like anyone else and I never noticed anything particular.
    The oral route is a major (perhaps the main) way the body controls allergies. And when the gut gets messed up in celiac disease, I think it messes with this allergy control mechanism. Allergies can go wild.
    Dr. Brostoff wrote in his book “Food allergies and food intolerance” that having a problem with histamine-rich foods suggests high intestinal permeability. This is an old book but I’ve found it to be pretty accurate in some ways.
    After a strawberry challenge in 2005, I got fiercely itchy all over my body. My eyeballs were itching a lot! Also my thoughts were jumbled, I could hardly string two thoughts together. I attributed this to the histamine in the strawberries. I was very sick at the time, tons of delayed food allergies were emerging, and I think likely my gut was very traumatized and leaking.
    But now I don’t have problems with high-histamine foods. I make my own lacto-fermented fruits & veg’s as homemade probiotics.
    Did Dr. Afrin make prescriptions for treatment and medications for you, or did he just do the diagnosis? I’m not sure that it would make sense for me to travel to see him if he just does the MCAS tests – this is just a syndrome so far, of mast cells releasing mediators, somewhere in the body. I’m already doing a lot of the MCAS treatments.
    I got allergy shots from 2001-2006 but quit eventually because I couldn’t tolerate them. I would get sick for about 3 days after each shot, with a hayfeverish feeling. That’s unusual and it probably has some relation to celiac disease. Now I’m planning to try allergy shots again, along with my oral desensitization at home.

  12. Laura

    ps It would be interesting to know if there’s a connection between local allergic rhinitis and the food sensitivities that sometimes occur with IBS.
    Or, whether there’s a connection between the severity of people’s allergic symptoms compared to their blood IgE level, and food sensitivities in IBS. I’ve never had horrible allergies according to skin and blood tests, but I have had horrible inhalant allergy symptoms.
    Having severe inhalant allergy symptoms compared to one’s blood test result, and food sensitivities suggest that something is messed up with mucosal immunity.
    I’m hoping the two are connected, in doing my food desensitization experiments – hoping that asking my body to build tolerance to foods, will help my inhalant allergy symptoms as well.

  13. Lynda

    I have been suffering from symptoms of celiac disease for years but only realised I may have it after speaking to a Doctor today. I would like to thank you for this very informative website and all the very interesting posts. After being prescribed with antacids, inhaler and steroid nasal spray, I was prescribed an antihistamine Cetrizine. I am not sure if it is helping. I asked a pharmacist if they have any sulphite free antihistamines but was told no because they all have salt in them. I have since noticed things with sulphites make me cough and if I take too much I vomit all day. I always wondered why herbal tea made me cough until I found out tea bags are bleached with sulphites as is salt. It seems just about everything contains sulphites. I am seriously missing my wine and apple pie. Can anyone recommend a toothpaste? Perfume, hair and body products containing salicylates make me itch and cough too. I read that too much mercury in the body inhibits the enzyme sulphite oxidase which is needed to turn sulphites into sulphates. I have a mouth full of old mercury amalgam fillings. My dentist told me one has been cracked for a while. I also grind my teeth when I sleep. My question is, does anyone else with these symptoms have amalgam fillings and think there may be a connection?

    1. Jess Post author

      Hi Lynda,
      Thank you for writing. I have absolutely no idea if your sulfite issues are related to your fillings. In my case, and many of us with celiac disease, are issues are due to having overactive mast cells (cause unknown but likely either an environmental trigger or bacteria/virus/imbalance of bacteria).
      I reacted to all antihistamines from the sulfited starch fillers, but I’ve been able to work with a compounding phramacy and I now take sulfite and gluten free loratidine 10 mg capsules two times a day. Do you have access to a compounding pharmacy? Also, there are sulfite free wines made by Orleans Hill which are actually pretty good. I’ve been trying to minimize my alcohol intake because of it’s effects on intestinal permeability, but Orleans Hill wines have gotten me through several social situations.
      Lastly, for toothpaste I have had good success with Tom’s of Maine, but I know that some with sulfite issues in the Facebook support groups make their own toothpaste due to reactions.
      I hope that you are eventually able to find answers for your questions.
      Jess

    2. Laura

      Lynda,
      I also grind my teeth. I can’t stand wearing a plastic guard in my mouth, so I got a biofeedback device called a Sleepguard.
      I’ve also found that my sleeping position matters a lot. When I sleep on my belly, my teeth get sensitive, which means I’m grinding them overnight (even with the Sleepguard). When I sleep on my side, I don’t grind my teeth with the help of the Sleepguard.
      According to research, one’s sleeping position doesn’t affect toothgrinding, but for me, it does.
      The biofeedback is more of a fix than wearing a plastic guard, because it actually stops the grinding, rather than just making it less harmful.
      I doubt the fillings themselves are doing anything to you, but toothgrinding will make more of the fillings go down your throat.
      I’m allergic to Tom’s of Maine also. It’s corn-free unlike most toothpastes, but it does have xylitol made from birch, which I’m also allergic to.
      So I get toothpaste made by a compounding pharmacy, by a prescription from my dentist. It’s fluoridated baking soda. I add water before using it on my teeth, hoping it will be gentler on my teeth that way.

      1. Meg

        Yes — mercury vapor causes mast cell degranulation. Mercury amalgams and Thimerosal are the culprit in the majority of these cases. Check out the Andy Cutler Protocol.

    3. Sharon

      I know this is an older post, but was rereading it just now and noted the replies didn’t reply to your fillings question.

      YES, they can be a complicating factor. Mercury can leach out of older, cracked fillings. A dentist put a tiny camera in my mouth and showed me how 2 30 year old fillings my old dentist said were ok, had expanded and cracked causing mercury poisoning which showed up in blood and urine tests (hair, too).

      Mercury interferes with many reactions in your body, and can wreak havoc in your gut and other organs. In your gut, Candida feeds off it and can proliferate, enhancing food sensitivites.

      To get rid of it, must find a competent dentist who can remove fillings with mouth dam AND protection from mercury vapors. It must be done very carefully.

      Then, and only then, you can chelate, under an expert doctors supervision. The Cutler protocol is well known, but others are effective, too. DMSA and other chelating agents are used, for up to a 2 year period. Slow and careful is good – you don’t want to mobilize it and then have it take up residence in your brain, causing Parkinsons, etc. I had impaired kidney function for awhile, even with careful treatment, which resolved over time, though you can get permanent damage if its not done carefully.

      One last thing, mercury tends to be stored in your fat. Though I went through chelation twice, I lost 30 lbs. and mercury showed up on my blood tests once again, so I nerd to chelate again…

      Mercury fillings are not to be underestimated as a source of problems. Choose amalgams, and they can give you a list of what’s in them before they go intyo your mouth.

  14. Mary Kloth

    Dr. Jess,
    I just want to say thank you from the bottom of my heart! I will be diagnosed officially this afternoon with a mast cell disorder. I drove the search for the cause of my problems by googling “too much histamine” and the like. There I found my symptoms, some of them crazy sounding, exactly as I experience them. Thanks to both the scientific literature and your blog, I will meet with my GI doctor and my allergist today and hopefully come away with a direction for tackling the disease.
    Fortunately I have doctors and a pathologist who were willing to listen. My GI doctor is unfamiliar with mast cell disorders but ordered the correct stains of my biopsies. And although the slides had been correctly stained, counts had not been done. Fortunately my husband is a physician and was able to reach the pathologist to ask that he make the counts. The pathologist was unsure of why but was willing to check our resources and then make the counts. Sure enough, the counts per high power field were more than double of normal throughout my gut.
    Today I will see my doctors armed with this information that was not on the original path report. Hopefully I will make the transition from the dreaded no-help IBS classification to whatever mast cell disorder can be pinned down. I never thought I would be so happy to be labeled with a new disease! Despite being severely restricted in my food choices due to a super soy sensitivity and allergies to many other foods, my biggest triggers are amines, sulfites, and olfactory. While I have learned to have a good degree of control over what I eat, I have zero control over cleaning and perfumed products others use that can make me sick for days. If I can find a medication that stops my mast cells from degranulating every time I get a whiff of a trigger, I will get my life back.
    Please know you are making a huge difference in people’s lives.
    Thank you,
    Mary

    1. Jess Post author

      Hi Mary,
      You are welcome. I am so happy that you’ve been able to solve the mystery of what’s been troubling your body. For each of us who knows that we have overactive mast cells, there are probably hundreds that don’t, but I think that we all can make a difference by sharing our stories. I hope that you are able to find some relief with mast cell stabilization therapy. It has made a HUGE difference for me, and I also take Quercetin, which seems to help a ton. I remember being at the point when I felt like I reacted to almost every food I ate and it was very scary.
      I really appreciate your kind words and I wish you well!
      Jess

      1. chasity

        thats me right now. cant get a doc around here to listen. im going to send them your article and pray they listen. May i ask why you dont do the h2 blocker? also can a scope give any evidence if i have the syndrome and not full disease?

  15. Mary Kloth

    May I ask what brand and amount of quercetin you take, Jess? I, too, need sulfite, soy, and gluten free products, and companies are so often unwilling to verify ingredients. As I understand it, something ubiquitous in pills like magnesium stearate (added only to make the powders run more smoothly through the machinery!) may or may not contain soy, and drug companies sometimes have multiple suppliers for their ingredients that they don’t track. Anyway, I am sure you understand the difficulty of trying to ascertain this information as you alerted me to the sulfites in Zyrtec. I can’t tell you how many times I have called McNeil about Zyrtec! I guess I will have to add cetirizine to my compounded medications as I am about to be put on multiples of my current 10 mg dose.
    I had to laugh about your reference to sulfite free wine AND I will try it in the future when I get a handle on all of this! There is nothing I enjoyed more in the past than a hearty European red! Though we live within an hour’s drive from Napa and my daughter is becoming a sommelier, I haven’t been able to drink American wines for over a decade, even ones supposedly brewed in European traditions due to the RWH–red wine headache. Many say this is a sulfite issue, but supposedly when European reds are compared with American reds to which no sulfites have been added, they have just as many naturally occurring sulfites. I met a young man from South Africa who said he did a research paper on this topic and the difference is not in the sulfite levels but in the yeast. He claims that the naturally occurring yeast in America differs enough to cause an intolerance in many people who can drink European wines. I don’t know if he is right, but I have had the best time in France and Spain, both eating and drinking. In fact, I have never accidentally ingested soy in a fine dining restaurant there as I have so many times in the US.
    Thanks,
    Mary

    1. Jess Post author

      Hi again,
      I have been taking Jarrow quercetin 500 mg tabs 1-2x/day. Here is the link. I’ve been ordering them on Amazon.com. If there are hidden sulfites in them, I have never reacted to them.
      I agree with you that it’s a quite a different experience to dine overseas. I was in Spain in January and I was able to eat safely, every meal out, the entire time. I am dying to go back!
      I hope that the compounding works out well for you. It was rather expensive for me, but worthwhile to feel better.
      Jess

  16. Jan

    This sounds just like what I was diagnosed with last week except that my doctor told me it was cholinergic urtacaria. Is this the same thing? I have CD and am highly allergic to dairy and egg. I lost 70 lbs in 6 mths thanks to CD and during that time required a total hysterectomy for fibroids, etc. Shortly after the CD diagnosis and the surgery, I started developing kidney stones and these pains in my back that were unrelated to my kidneys. I also started becoming very sensitive to heat. To the point I felt like I had an elephant on my chest, my throat would tighten and all my lymph nodes would swell. My docs counted 8 one day so they biopsied. Thankfully, they were fine but the “tightening” in my throat has continued over the past year. Just last week my symptoms got bad enough I went back to my gp. She said she thought I might have developed an allergy to the sun. She sent me to my allergist. He is a wonderful doctor and comes highly recommended. When I told him I was getting worse and that heat really brought on my symptoms that now included a racing heart, he left the room and returned with a syringe. He injected me with something that made my arm swell immediately and shortly after I got the tightening in my throat. This is when he told me about this new diagnosis. Have you ever heard of anyone complaining about this tight throat? It’s not hard to breath but if I run my fingers down my neck it makes me cough. Plus, it feels like something is in my throat and my tongue starts tingling. I am sure he has diagnosed me correctly but curious if this is the same thing as the condition you have described above. Also, due to all my lovely allergies and Celiac Disease they have been working on compounding meds for me. I just picked them up tonight. Not gluten. No dairy. I start zyrtec, singulair, and zantac tonight. Praying this works because this tightening in my throat is quite concerning when it happens. I am not even able to sleep on my side most nights due to this. Thanks for your article. Glad I found you through Pinterest!

    1. Jess Post author

      Hi Jan,
      It really does sound like your cholinergic urticaria and my mast cell activation syndrome symptoms have similarities (especially in regards to the throat tightness) but I searched the medical literature and based on what I read, it looks like they are two different diagnoses. However, your allergist did prescribe you exactly what those with MCAS would take (antihistamine, H2 blocker, and singulair, which is a mast cell stabilizing medication), so perhaps he knows something that I am unable to find.
      If you ever get a chance to ask him about whether or not cholinergic urticaria is mast cell-mediated, I’d be interested in knowing the answer.
      So, as you can tell, I don’t know the answer :)
      Jess

      1. Jan

        Thank you for your reply. Thought you might like to know that I had a really bad attack on Tuesday that landed me in my doctor’s office. This attack was brought on by the heat from the early morning sun hitting my face while driving into work. It was the first time I felt like I was not going to be able to breathe and the tightness in my chest changed to sharp pains. I pulled over in a shady area and called my doc. They wanted me to call an ambulance but instead I went to a walk-in clinic a few blocks away. They did an E.K.G. and that was fine but my blood pressure went way up and I was shaking all over. After I cooled off and recovered, the walk-in doc sent me straight to my allergy specialist’s office. My doctor said he wanted to test me for MCAS. I was pretty out of it but told him I was sure that was what I had read you had. I came home and looked and sure enough it was. I was also really pleased to know that my doc that has practiced for a lot years was educated on this since you mentioned it was mostly the younger doctors that knew of this. My test won’t be back until Monday or Tuesday but I will let you know what I find out. For now he has upped my imipramine to 50 mgs per day, 80 mgs famotidine, and montelukast. He mentioned that if I could tolerate this mix and didn’t get too tired then he was going to pull me off of all of these and put me on one prescription of Doxepin (100-300mg). I totally trust what he is doing is correct but just not thrilled to be taking an anti-depressant. He has assured me that we will find the right med to allow me to be out in the heat but today at my son’s college graduation I was only able to be out about 15 minutes before my tongue and left side of my body started tingling. Keeping my fingers crossed that we find a fix quick since summer is upon us.
        Sorry so long but since you asked that I keep you posted I thought I would tell you the latest. As soon as the test results come in I will let you know if it is MCAS or not.
        Thank you so much for taking the time to reply. It’s greatly appreciated and especially comforting to talk to someone that is experiencing these same symptoms.

        1. Jan

          Jess,

          Thought I would give you an update. Since I last wrote my tryptase level is at 15. I had a bone marrow biopsy last week and waiting for answers as to whether this is indolent systemic mastocytosis like my allergy specialist suspects. I am seeing someone in my area but torn as to whether I should travel out of state to see someone with Dr Afrin’s TMS group of doctors. I would greatly appreciate your opinion on seeing a “mast cell specialist” because I do not believe that the “specialist” that I am seeing believes in or will diagnose me with MCAD. I have had wonderful success on the H1’s and H2’s that I have been taking. Heat, pressure, smells, foods are my worst triggers but thankfully after starting the meds I have been able to at least put my sunglasses away while inside. I do fine inside as long as I can control my environment but I still have a long way to go with my stomach issues. I am taking 160 mgs of famotidine a day, 2-Allegra D 24 hr per day, 50 mgs imipramine, montelukast and now salt tabs as a result of very low potassium and a tilt table test showing autonomic dysfunction – not POTS- but some other long name that falls in this category. Any thoughts would be greatly appreciated.

  17. Mary Kloth

    Jess,
    Thank you for the information on quercetin. I just began taking it a couple of days ago. I held off because I had to take a trip to attend my son’s college graduation and didn’t want to begin anything new.

    Boy, do I need to get a grip on my olfactory triggers! A mother of one of my son’s best friends was kind enough to put out the word to all in my son’s circle of friends and their families that I struggle with perfumes and colognes, which was an enormous help. As long as I stayed insulated in this group I was fine. But I became progressively more tired as the week progressed. Then, on the second leg of the flight home, I knew I was in trouble as soon as the air came on in the cabin. It was as though an offending scent was in the cabin’s air system. I felt myself begin to react immediately, before we even pushed away from the gate. I couldn’t help but think of the Wicked Witch of the East screaming, “I’m melting!” when water was thrown on her. Then the cabin temperature plummeted to meat hanging conditions. Everyone around me put on everything they had and asked that the temperature be increased, but to no avail. I am not sure which was worse on my mast cells–the olfactory trigger or the cold–but I was toast in no time. Fortunately I was traveling with my husband who was able to get me home and tuck me in bed for the next few days of intense brain fog, joint pain, etc.

    Once I recovered, I began cromolyn sodium. It initially gave me both a stomach ache and headache, but I began majorly diluting it and sipping it rather than taking as directed. This helped me tolerate it better, and I am already up to 3 or 4 ampules a day with no side effects. And I have begun the quercetin. I am on the road to mast cell stabilization!

    I agree with you that there is a likelihood that gluten intolerance puts us on a path toward higher histamine diets. I am not gluten intolerant myself nor celiac as far as I know, but I am so sensitive to soy that I must avoid gluten flours, and most GF flours as well, as they are almost always enriched with soy-containing ingredients or cross contaminated. My husband and I thought we had a healthy diet, eating vegetarian a couple of nights a week, primarily spinach salads with avocado, tomatoes, and homemade balsamic dressing, and fish, often cooked with a citrus or wine/caper sauce or grilled with Cajun seasonings. And strawberries–one of the few fruits I am not allergic to. Heck, my favorite vegetable was lightly sautéed spinach with garlic and cherry tomatoes and a squeeze of lemon juice or sprinkling of balsamic vinegar! Just a teaspoon of that spinach would now make me sick for days.

    Another thing that might have been a precipitating factor toward histamine intolerance was that we have grown tomatoes and lemons ourselves for a couple of years. In California that means a good five months of solid, fantastic tomato production and yearlong availability of Meyer lemons. Certainly I over-indulged in eating tomatoes, something an allergic person shouldn’t do, as well as exposing my bare arms and hands daily to the leaves. I also was cooking regularly with lemons ala the Barefoot Contessa! And enjoying a glass of European red most days, strictly for the now-disputed health benefits reservatrol 😉 Yep, my mast cells may have spiraled out of control on their own, but I also gave them a healthy dose of histamine daily. Live and learn. If you are highly allergic and reading this, please hear my caution! While a medley of ripe, colorful homegrown tomatoes may scream Greek salad, consider cooking and freezing some of the largess instead of eating daily.

    I hope you have continued to improve, Jess. I really appreciate your blog and your sharing of information. My allergist has referred me to Brigham and Women’s, but while I wait for an appointment, I have been able to learn most information from Internet blogs and forums.
    Sincerely,
    Mary

    1. Jess Post author

      Hi Mary,
      You are welcome. I am happy that you are on the road to feeling better.
      I cannot agree with you more about how important it is for all of us to make sure to eat a wide variety of foods…in the past I used to eat the same foods over and over too, and now I know that I need to change things up all of the time. The blessing is that I’ve been able to explore new foods and it’s forced me to get better and cooking and food preparation.
      I hope that the quercetin and cromolyn work out for you. I am glad that we’ve been able to connect on here. Please feel free to post any helpful advice on here for others to read too, I can assure you that people have been reading this thread/post.
      Jess

  18. Mary Kloth

    Jess,
    Thanks for your encouragement. One piece of advice I do have for anyone with allergies is the app called My Symptoms. It is a diary/ journal/tracker that I have recently begun using to keep track of my food, medications, and symptoms. There is nothing magical about it. It has an “analyzer” that might be able to help one determine the more likely candidates for causing a headache or cough in what one has consumed, but I haven’t used it enough to know if it is really helpful. I just like the ease of entry and having all of the info in one place. While an allergist can test for a slew of common environmental allergens, when it comes to food and medication allergens, for the most part one must be one’s own sleuth with elimination diets, etc. The allergist can do little more than confirm or dispel suspicions. And once one has MCAS, the days of being skin prick tested are probably over as all antihistamines must be stopped for almost a week prior. I can’t imagine I will ever be able to stop all of the ones I am now taking for that period of time. The risk/reward wouldn’t warrant it. The last time I stopped just 10 mg of Zyrtec for a week I could have scratched myself to death! (If I were a doctor drumming up business for a MCAS practice or study, I would google ‘problems with stopping Zyrtec.’ There are so many people like me whose immune systems go nuts when they stop. Is this a form of rebound or are these extreme reactions indicative of mast cell disorders? It was my first clue that I had too much histamine being released in my body, and from there it took about five minutes to begin reading about mast cell disorders.)
    Another benefit of carefully tracking food and symptoms is that you can begin to understand your body’s particular responses to different allergens and chemicals. This frequently lets you identify the allergen to which you were exposed. For example, d-limonene, the citrus extract used in a lot of shampoos and citrus housecleaning products, causes a specific burning, itching rash in the top center of my scalp whether I ingest lemon peel or smell lemon Pledge. MSG causes a headache in the lower back portion of my head, while sulfite pain is a shooting mid section phenomenon. Histamine head pain is a dull ache of the left side of the head and left eye, as though I am wearing a scull cap that is too tight and has slipped forward over one eye. And none of these is anything like my most frequent head pain, migraine, and it is useless to throw migraine medication at them. If you suffer headaches, you might consider keeping track of specifically where your head hurts and what it feels like. You might be surprised to discover “signature pain” that can be quite useful. I recently had a severe sulfite reaction to a Litehouse dehydrated onion product. This is a brand of spices, supposedly from Germany, that has recently showed up in most grocery stores, including Whole Foods, here in the West. Less than a teaspoon of it gave me fireworks in my brain for 4-5 days, and no sulfites are indicated on the label. I won’t be buying any of that spice brand again. I am hoping that my histamine head pain can become something of an early warning system. There must be some good that can be gleaned from symptomology, and I am determined to make it work for me.
    I am completely unaffiliated with the My Symptoms app! It sells for $2.99 for the iPad version.
    I wish all who read this better control of your health.
    Mary

  19. Maryann Weston

    Thank you so much for this article. I have contact urticaria and am concurrently being tested for Mast Cell Disorder. I also have gastrointestinal symptoms (previous diagnosis of IBS) and Graves Disease. I have been struggling with skin conditions most of my life but urticaria much worse in the past 8 months. As someone who knew nothing about MCAD before today, your article was a welcome relief. Thank you again.

    1. Jess Post author

      Hi Maryann,
      I am so glad that you found my post and that it was helpful to you.
      I have been on medical treatment for MCAS/MCAD for quite a while now (antihistamines, cromolyn, quercetin, and a probiotic) and it’s been great to get my life and health back. Dealing with MCAS has made having celiac disease seem like a piece of cake.
      All the best to you on this new journey. And remember that there are a ton of us out there with this same problem!
      Jess

  20. Julie Larson

    Hi Jess:
    I want to thank you for your essay on MSAD. For 15 years, I recieved a Lupus diagnosis with both my rheumatologist and I knowing that the diagnosis did not fit neatly. Recently I discovered that gluten is the problem and felt better while refraining from the protein. But that did not provide answers to the symptoms of sun sensitivity, heat intolerance, fainting, muscle pain. My life has been so limited due to these sun related problems. When I read your article about histamine, everything fell into place. I am in the process of getting an appt with Dr Akin (I live in Boston) and already started low histamine foods. It feels so hopeful to know ways to make myself healthy instead feeling powerless from lack of knowledge. A lifetime of questions is starting to come together. Your willingness to take complicated medical information and explain it in layman terms is greatly appreciated. And most of all you are also willing to tell the story in relation to yourself. Thanks again.

    1. Jess Post author

      Hi Julie,
      It is really nice to hear from you and it’s wonderful that you may be able to get in with Dr. Akin.
      I contemplated seeing Dr. Castells but live far away from Boston so could not justify the travel. I hope the process of being diagnosed goes smoothly for you. I was diagnosed about 10 yrs ago with “atypical” lupus but I never took it seriously because so many symptoms did not fit, looking back I am pretty sure that this was the point that my MCAS stuff was probably starting.
      I think that there are many of us experiencing the same problem, fortunately we are starting to figure it out and have the ability to share our experiences on here!
      All the best to you and happy summer!
      Jess

  21. Sharon Simas

    Question… We have celiac, and among other things, we seem to be chronically short of the amino acid histidine. In general, we’ve felt better as we bring our nutrition up to normal through careful, doctor supervised supplementation.

    However, when I tried supplementing with L-histidine, I felt like a truck hit me – got powerfully drowsy, wanted a nap, and nose stuffed up and itchy eyes. Interestingly, I switched to L-carnosine, which is beta-alanyl-l-histidine, and do just fine on that. I tested short of it, too, and it does good things, so I’ll plan to stay on it.

    However, my daughter and I suspect we have MCAS, the stories here sound a lot like us.

    Any thoughts on why we are histidine depleted (bet I can guess….) and why l-histidine is so bad and why carnosine is fine?

    Also, I’ve been on all the drugs you mention over time… And hate living like that. Are there any thoughts on nutritional support for this problem beyond quercetin? Since I started massively suppplementing, according to lab results, my symptoms have been light years more manageable, I take no meds, but live with constant low grade symptoms, which is where I was with no supplements and bags of meds and epiPens….

    It just strikes me that if we can give the body what it needs to function properly, maybe these problems would be less severe. Is anyone doing research along those lines?

    Thanks for your website :-)

    1. Jess Post author

      Hi Sharon,

      I went through a traditional medical pathway for my training so I am not well-versed in amino acid testing or supplementation for chronic illnesses.
      That being said, it sounds like for some reason your body is converting certain forms of histidine to histamine, but not others. It must have something to do with your levels of enzymes that convert that metabolize and break down the different forms of histadine, but beyond that I cannot give you answers.
      Some resources that may be helpful for you on your quest for nutritional support for MCAS include:

      1. Yasmina, The Low Histamine Chef
      2. Dr. Janice Joneja
      3. Neuroprotek. If you search for Dr. Theoharides you will come across info on supplements that may be helpful.

      These are the first 3 resources that come to my mind. Perhaps others can share. I’ve personally had good experiences with quercetin and dietary manipulation, but I still do need cromolyn sodium and antihistamines to be able to function day to day.

      Jess

      1. Sharon

        Thanks, Jess.

        I am quite aware of how serious this is, but think there’s got to be a better way than living off of bags of anti allergy drugs. Having done it for years, it’s not a way to live and causes long term damage.

        I’ve been familiar with Dr. T. for a couple of years, and can’t really say I’ve had much luck with that type of supplement though I’ve taken them and still do. Dr. J looks like a knowledgeable conventional allergist, but there was a lot missing from her site.

        I’ve greatly decreased my reactions and gotten off all of those damaging drugs through diet and reducing overall inflammation, but would like to understand this histamine issue/MCAS from a functional or naturopathic medicine approach, particularly as another family member is really wrestling with aserious case of it.

        I suspect that healing the gut lining, getting nutrition to normal levels and somehow working the histidine pathways will be the answer. Methylation and toxins seem to be big topics for us, too, and perhaps there’s something not happening in the liver. Not sure, but I’d be interested in any further thoughts.

        Thanks, Jess, for discussing this vexing malady.

        1. ACurtis

          Think about having a 23 and Me genetic test done. It shows genetic mutations in the liver–CYP P450 Cytochromes that have to do with the liver’s ability to detoxify toxins in the Phase 1 Pathway, as well as Phase 2 Pathway genetic mutations having to do with glutathione, amino acids, methylation, sulfation, acetylation, glucuronidation, and sulfoxidation. Knowing what’s out of kilter in these pathways will also help you devise a (more natural) plan to figure out how to replace what is missing.

          1. Sharon

            That’s a wonderful suggestion. We have, and, in addition to the CYP mutations, have also found the methylation mutations to have a big impact on our health. And doing a Genova Diagnostics NutEval test to determine nutritional deficiencies related to the methylation mutations to get the methylation cycle working properly has done wonders. Along with healing my gut, this strategy has gotten me off my allergy meds. It’s how I found out about carnosine, histidine, and glutamine depletion, etc. The 23andme test is cheap and easy to do – just go to their website. The Geniva Diagnostics website has a “Find A Provider” page where you can find someone in your area who does the test.

          2. ACurtis

            Sharon, that’s great! I am going through the 23 and Me process right now and have found myself a new ND who I am hoping will take me seriously and really help me look for what is wrong with me–and not like my first one, who was only interested in having me take nutriceutical after nutriceutical but never tested for MTHFR or anything else (in Phase 2 Pathway) that would have explained my symptoms and issues. I found the one CYP mutation (that I know of so far) by researching myself and having a test done for that one CYP mutation I came upon. I brought up the thought of methylation issues, but the previous ND said I didn’t have any symptoms for it; fast forward 7 years, and my new ND says I have all the symptoms for it! So it will be interesting to see what my new tests show. And thank you for telling me about the Genova Diagnostics NutEval test–I will bring that up with my new ND. He is concerned that my body might not be utilizing magnesium correctly (I have severe HBP that doesn’t respond to pharma drugs or much of anything holistic, leading him to believe enzyme pathways are off and I might be severely depleted in key minerals). It is a lengthy battle, but I am pushing forward on trying to figure out what’s going on with my body. I also have Gluten Intolerance, soy intolerance, and casein allergy, and now I am concerned about histamines, so it will be interesting to figure out the underlying root cause of everything. I did let my new ND know to look into Mast Cell Activation Disorder, based on issues I’ve had since I was 10 years old (cold urticaria, hives, photo/sun/light sensitivity, fatigue) that have been getting worse as I get older. I think before everything is said and done that I will finally have all the tests done that should have been done 7 years ago. I just want to get to the bottom of what’s going on! I have befriended a holistic nutritionist on FB; she has been very helpful in giving me direction and guidance as well. So many caring people! Thank you.

          3. Sharon

            ACurtis,

            See my other posts for a fuller picture. Sounds like you’re on the right track, though. You want to make sure that your doctor has been trained in attacking the mutations with nutrients to fix problems. Functional medicine training, or a good naturopath (trained at Bastyr) would be good.

            Then, there is new training for doctors. Ben Lynch and Paul Anderson have held recent classes for doctors in dealing with the mutations. Ben is behind the MTHFRsupport website. Once you have the raw results file from your 23andme test, you can run it through Sterling’s app on MTHFRsupport.com. That then gives you a 20 page report of various mutations, including the CYP ones, allergy markers, methylation and mitochnodria governing mutations. Once you know what you’re up against, you can work out a plan to heal.

            We’ve found that our Genova Diagnostics NutrEval results, which test for nutrient status, correlate with our genetic mutations. I have 6 years of labwork and genetics on 5 family members, and have worked with others as well.

            It helps if you map out your mutations onto a diagram of the methylation cycle – Amy Yasko, Dr. Roberts, and Rich Van Konynberg all have them. Then, looking at the picture, you can begin to see where the bottlenecks are.

            This so critical because the methylation cycle has a lot to do with how DNA replicates. People with poor methylation have food allergies and chronic gut problems, including Crohn’s, IBS, and MCAS/MCAD. Amino acid malabsorption/deficiencies make the body unable to make digestive enzymes and other useful chemicals we need for our bodies to run properly. Fatty acid malabsorption/deficiencies cause cell membranes to have problems. And deficiencies of B vitamins, magnesium, manganese, zinc, vanadium, molybdenum, etc. can cause this process to be compromised, causing a whole host of health problems.

            I think most of these diseases are more closely related than we are used to thinking about, and that getting our nutritional status to “normal” fixes a whole lot of things so we don’t have to band-aid problems with a lot of drugs. Many other people are beginning to realize this, too, and the conventional medical community has been slow to respond, cheered on by the pharmaceutical industry that is happy to keep selling us drugs.

            As I’ve mentioned in previous posts, I’d like to know more about how BH4, tetrahydrabiopterin, may play into MCAS. I think it is significant as is the entire methylationn cycle.

            Good luck with your new docs – hope you find some answers!

  22. Kathy

    Thank you, so much, for this article. I wonder how common the combo of Celiac/MCAS is? I have both, too. My MCAS is pretty darned baleful, and includes the dreaded anaphylaxis….which is what started me on the journey to figure out what-the-heck-is-going-on. My major problems started happening around age 50, a couple of years after menopause. A scratch test indicated a myriad of food allergies. A blood test indicated NO allergies. One doctor says the skin test is definitive, another doctor says the blood test is. Grrrr. So I got an appointment with Dr. Philip Miner in Oklahoma City, who did a colonoscopy and endoscopy. Celiac disease confirmed. Also, an abnormal number of eosinophils (sp?). Dr. Miner said those puppies are probably the trigger of my MCAS, and if we can get them stabilized, it should give me relief. To that end, he has me on ursodiol – a drug normally used to treat gall-bladder and/or liver disease. Apparently, it has been found to stabilize eosinophils. So far, the only benefit is a less stuffy nose. Hey, I’ll take what I can get. :)

    Oh, and Dr. Miner says, regardless of allergy testing, NO wheat, onions, tomatoes, beef, pork, chocolate, or oranges.

    So, how common is the Celiac/MCAS combo?
    What are eosinophils good for, anyway?

    Thanks for your blog!!

  23. Ms. Money

    I have Celiac and I’ve experienced the same pattern as Annette (comment dated January 4, 2014). I’m glad you have this blog. It’s a lonely experience. I too have met a few people with similar symptoms, but I’ve never met anyone who was diagnosed with MCAS. I’m being tested for it. I don’t have any food allergies, but as you can imagine, I keep having reactions as if I’m allergic to everything. I’ve had some success on the paleo diet, but I still have some unknown triggers. Until all of the tests are done, I’m reading everything I can.
    Thanks for being here.

    1. Jess Post author

      Hi Ms. Money,
      I am sorry that you are experiencing MCAS symptoms too.
      It can be very lonely and it’s frustrating to make the transition to the GF diet, only to discover that it’s just one small piece of getting your health back.
      I hope that your testing and diagnosis go smoothly. At the height of my symptoms I survived on chicken, lettuce, sweet potatoes, squash and a few other foods. It will/should get better, but it takes time. Please know that you can comment on here or email at any time: thepatientceliac@gmail.com. Also, there are some helpful groups on Facebook, including Yasmina’s Histamine Intolerance one (it is closed for privacy but you can ask to be added). Hope to see you on there!
      Jess

  24. Sharon

    Has anyone looked at BH4 deficiency? I think it stands for tetrahydrobiopterin…

    I’ve been digging through our family’s 23andme results, run through the MTHFRsupport utility that spits out several pages of troublesome mutations known to cause health problems and looking up our homozygous unsavory mutations on Dr Roberts’ Heartfixer website and in Amy Yasko’s Pathways to Autism.

    Seems we hit the jackpot on genes that deplete BH4,.and apparently BH4 deficiency has been linked to mast cell degranulation! From what I’ve read, it’s possible to supplement BH4, but theres a little more to it than that. I’m going to discuss with our doctor. Does anyone else here have any experience with this?

    Thanks

    1. Jess Post author

      Hi Sharon,
      I sincerely apologize for overlooking this comment from you from months ago regarding BH4 supplementation, it somehow made it’s way through and posted without moderation, so I am just seeing it now. Have you spoken with your doctor about BH4? Have you tried it? If so, has it made a difference?
      Thank you.
      Jess

      1. Sharon

        Thanks for checking back, Jess.

        Have been slowed down this week, just had total hysterectomy for endometrial cancer, for which I had “no risk factors”, excepting my genetics and odd chemistry…

        I agree with Brenda thorne, that this is far more complicated than high histamine levels. There’s a good discussion over on GeneticGemie.com on many of them, including Dr. Theoharides work at Tufts.

        I have both MTHFR1298C and several NOS mutations, all of which deplete BH4. There finally does seem to be a BH4 supplement on the market in the last few months. seems there are a lot of patents around it preventing more. You can also stimulate more bH4 production through targeted nutritional supplementation. Apparently, your mileage may vary depending on what genes you have and current biochemical status.

        Bh4 has been linked to MCAD, here’s a quote from another website about it and the fairly common mutations I mentioned (fat fingers on iPad or I’d give you the source…) I’d be interested in your thoughts…

        Quote:
        MTHFR Polymorphism may be a predisposing factor to mast cell disease. 5-MTHF regulates biosynthesis of BH4. The A1298 mutation in the MTHFR enzyme effects the conversion of BH2 to BH4. Less amounts of BH4 inhibits NO formation resulting in increased mast cell degranulation. Inadequate BH4 formation also puts a strain on the conversion of tryptophan to serotonin and tyrosine to dopamine, leading to low levels of the neurotransmitters: dopamine, norepinephrine, serotonin and melatonin.

        Low blood serotonin levels help define a sub-group of patients with mastocytosis that are more likely to present with neurological and gastrointestinal complaints. Human mast cells can express and be activated through multiple serotonin receptors, and synthesize and release serotonin. Low blood serotonin levels in such patients may be the result of low BH4 levels due to 5-MTHF deficiency, the result of long-term malabsorption from chronic inflammation of the gastrointestinal tract or both, as is the case with me.

        BH4 is a critical factor in cellular activities such as cell proliferation, cell cycle regulation and differentiation. Could BH4 deficiency secondary to MTHFR polymorphism be one of the fundamental mechanisms that underlie mast cell proliferation?

  25. Katie

    Hello Jess,
    I just wanted to thank you for this informative post.
    7 years ago now as a young teenager I was being tested for Mastocytosis and luckily my serum tryptase at most was only 19.6mg/dl so they just told me I had too much histamine. During this process they also discovered I had coeliac disease.
    I have since always struggled with the MCAS and have been told I must keep being tested until it is at a stable level for 5 years.
    While the gluten free diet did lower it initially it has still always caused me problems and my doctors have never really explained the condition or what I can do to improve it other than taking anti histamine tablets everyday.
    I have never met anyone else who suffers with both before and it is comforting know there are others out there. Thank you for the information. It is due to articles like this that I have a better understanding of what is actually wrong with me and I really appreciate it!

    1. Jess Post author

      Hi Katie,
      You are welcome. Thank you for sharing your story.
      Like you, I first learned about MCAS through the internet too, from a woman named Harriett who I met on Twitter who also has gluten sensitivity. I think that there are a lot of us in the same boat (we are just the lucky ones who have figured it out).
      I hope that you continue to heal and feel better. Please feel free to write at any time with questions.
      Jess

  26. Artzyone

    Hello!

    I found your blog while surfing MCAD. Lots of great info! Thank you :)

    I also have Celiac and MCAD. I see Dr. Afrin in Oct for a DX. I know I have it , but why I got it is what I’m after.

    I started taking a beta blocker in 2004, I found out it plays a role in MCAD. No one here in the DC area is looking at the impact of meds on mast cells.

    I belong to a large group community of people with Ehlers Danlos Syndrome. It was once thought to be rare but it is not. The new figures coming out of EDNF.orgs 2014 conference are suggesting that HEDS can be 1 in 200 to 1 in 500. Much more common than the 1 in 2500 , previously thought .

    I was wondering if you might be able to ” poll” your readers for EDS But it’s a multifaceted disorder and you can have it without being hypermobile. I always ask if people are super flexible , ” double jointed ” or have soft ears.

    I would love to hear your thoughts. We are finding a lot of MCAD in our group so it makes me wonder if there aren’t a lot of people with DX MCAD that have unDX EDS.

    Thoughts?

    Thank you!
    Lynn

    1. Heather

      Hi,

      Just wanted to say I have Ehlers Danlos, Celiac, and recently developed Cold Hives (which I’m thinking is MCAS). I’m thinking they are all related but can’t find a doctor to put it all together!

  27. Nicole

    Hi Jess!

    I have come full circle to your blog again. 😉 I feel like I can confidently say now that I have NCGS after finding that all my vitamin levels are outstanding. However, I’m still looking for the source of a number of strange symptoms. Apparently a lot of Sjogren’s patients are found to have POTS, or other dysautonomias. I have had some of the symptoms since childhood, but increasing (dramatically) in recent years. When I heard that MCAS was a cause of POTS, it all came together. I have had dematographia since I was a baby. Also, I’ve had abdominal pain and hives during excercise since childhood. Some of my weird symptoms that seem to be autonomically-related include:

    ~Hot flashes at night since I was a teen. I would get up and sponge myself down in the middle of the night to cool off.

    ~I’ve always gotten dizzy if I stand with my arms above my head, such as getting things off the top shelf, painting, writing on a tall white board (I’m 5’2″), etc.

    ~In my early twenties I developed severe gastric pain. Ten years later I deicovered that ws due to a gluten intolerance. I still have some problems with reflux, however, and occasional diarrhea that I can’t trace to gluten.

    ~Also in my early twenties, I began to get car sick when I drive distances (not as a passenger). Anything over about 1 1/2 hours and I start to get sick. My stomach is like a rock and my head spins. My eyes also blur and go out of focus. Sometimes the eye thing has happened apart from carsickness.

    ~Sometimes when I get up in the night I lose my balance. I’ve always caught myself but it’s a bit concerning.

    ~BP usually runs about 90/60 or slightly lower when I feel bad, 110/70 when I feel more normal. I do not usually have orthostatic hypotension, although I have caught a drop a couple of times. My pulse does not rise 30 points lying to standing, but it does at times go over 120 bpm at the 5-10 minute mark. Since it is inconsistent, sometimes perfectly normal, I am trying to gather enough data.

    ~Several times after a night out, but no more than my usual 1 drink, I have had an incredible heartbeat like a drum that shakes my whole body, lying down, and keeps me awake.

    ~Sometimes my heart races and feel like a fluttering or strumming pressure in my chest, like a panic attack, but I am not thinking anxious thoughts. This does seem to coincide with my menstrual cycle. My lowest BPs are also during and after my period.

    ~If I get dehydrated, even a tiny bit, I feel like I’m going to collapse. You can find me squatting in line at the grocery store sometimes, pretending to examine the tabloid headlines.

    Anyway, thanks so much for the great information you have here! I am going to bring it up with my doctor as soon as I get my act together. Do you think that my primary would be up to diagnosing this?

    1. Jess Post author

      Hi Nicole,
      Yes, we definitely have a lot of symptoms in common (dermatographia, night sweats, racing heart, low BP, etc). If you have a good relationship with your primary care doc and you feel like he or she would be able to listen to all of your symptoms and work through the testing with you, then it probably wouldn’t hurt to start there. In my case I worked with my local allergist as I am friends with him and I had previously been established with him about a year prior to my MCAS diagnosis when I started to develop symptoms of a sulfite allergy.
      There have been some recent comprehensive review articles about MCAS since I wrote this post in January, and my plan is to write a follow-up post about MCAS this fall if/when my life settles down a bit. Please feel free to share any helpful information that you come across too. Some of the best articles I have read have been from people who have read my blog.
      All the best to you!
      Jess

  28. Sharon

    ThIs week, Dr. Mark Hyman was asked by the Cleveland Clinic to start a Functional Medicine center there. There is a great paper on Functional Medicine you can find by Googling Institute for Functional Medicine 21st Century Medicine White Paper, which describes this approach to medicine.

    By working with practitioners over the past 6 years (ND, MD, and ARNP) we have gotten a lot of answers to our very complex health problems, many of which I see people sharing on this site.

    It has lead us into the root causes, which center on our genetics – we have several HLA and methylation mutations. Compensating for these through industrial strength, pharmaceutical grade, hypoallergenic
    nutritional supplementation has been very helpful in reducing our symptoms and limiting our need for steroids, allergy meds, inhalers, EpiPens, etc. along with an allergy friendy organic diet.

    No one commented on my previous comment about insufficient BH4, or tetrahydrabiopterin (due to multiple mutations), causing mast cell degranulation. I think this might be one of the root causes of MCAS, and am surprised that no one is interested in digging into this.

    Yes, we can all share our stories and symptoms and meds, but finding the root causes and working to figure out how to deal with them will give all of us the best chance for survival and better quality of life.

    Admittedly, what I am sharing is on the cutting edge of medicine, but understanding genetics, epigenetics and nutrigenomics is gaining traction and evidence is stacking up that this is the medicine of the future. Major research institutions and a few enlightened practitioners are digging into this now.

    It’s ignorance of these tools and complacency that is our enemy. I’m hoping that this forum can move towards investigating these causes and looking at ways of compensating for them. It can offer many of us hope for a better life.

  29. Melissa

    I know this is a slightly older post but I just came across it in an attempt to understand MCAS. The reason I got here – I have been suffering from a chronic foggy head, fatigue, sinus pressure/headaches my whole life. I always suspected it was a result of some allergy be it food or seasonal. On a hunch, I took a claritin the other day and almost immediately felt better. The weird thing for me was that although the box didn’t talk at all about helping sinus and headache symptoms, it most certainly helped mine. So I started researching and have come to the conclusion it’s relieving my allergy reaction and therefore helping the side effect of the head stuff. Someone mentioned MCAS and I was floored to read so many symptoms I suffer from in addition to those listed above – heart palpatations when I bend over, night sweats, feel “hung over” even after only one drink sometimes. My question is what type of doctor would be the best to start with – functional doctor? allergist? I don’t really have anyone I am currently working on. Thanks!

    1. Jess Post author

      Hi Melissa,
      That is great that you are able to start to figure all of this out on your own.
      I would start with either an internist or allergist for the testing, as some of the urine tests have to be sent to the Mayo Clinic.
      I can think of a few others who worked with hematologists as well.
      I hope that you are able to find a doctor who you can trust and will work with you.
      In my case it was easy because I was already friends with my allergist and I brought him a list of MCAS symptoms, highlighted the ones I had, and asked for testing.
      Good luck! There are a few Facebook MCAS support groups that I’ve found to be helpful as well.
      Jess

  30. Mary Kloth

    Hi, Jess,
    Just wanted to say that I attended the Mastocytosis 2014 Conference and then saw Dr. Afrin as a patient. Both get outstanding marks from me. I am so grateful to the physicians who attend year after year and help to educate us. Attending the conference was the best thing I could have done for myself. I wish everyone with this disorder could attend. It was so helpful to hear how others managed different situations. For example, flying seems to be difficult for everyone. Several people said that in addition to wearing carbon filter masks, they pretreat with diphenhydramine. I tried that on the return leg of my trip and found it was the easiest air travel I have had in years. Since returning home, I have used my compounded Benadryl in a variety of situations and found it helpful. I always assumed it would knock me out, but I guess I have enough histamine for it to tie up that it doesn’t even make me drowsy. I also tried Neuroprotek and found it quickly clears up my brain fog. I hope you have a good handle on your symptoms. And thanks again for writing about MCAS. Your blog was instrumental in my diagnosis.
    Best of health to you,
    Mary

    1. Jess Post author

      Hi Mary,
      Thanks for taking the time to write and follow-up. I would love to be able to attend one of the large mastocytosis/mast cell meetings like you did, and I am also envious that you were able to meet Dr. Afrin in person. He was super helpful to me via email early on in my mast cell journey.
      I am glad to learn that your health is improving so much. I have been feeling a lot better too with my current regimen (cromolyn, Allegra, Quercetin, and diet) but I keeping Neuroprotek in my back pocket as an option if I need it.
      All the best to you!
      Jess

  31. Kate Dooley

    Jess,

    So glad to have found your site! I was feeling like the only Celiac on earth that also has a histamine intolerance! It’s been pretty rough eating for the last 2 years since diagnosis and it took me a few months to understand that there was something else going on aside from being genetically positive for Celiac. I had to diagnose myself in both cases and allergists at MGH and BI were really no help. I have been a bit disappointed with how the Celiac group over at BI has little understanding of Histamine intolerance and the nutritionist I was working with actually referred me to someone in California who has never even gotten back to me. I don’t have a problem with being gluten free but the histamine thing is really just too much. I have found that soy, tea and coffee, cheese and wine have gone from something I could tolerate sometimes to something I can never have now. I have spent more money on Quercetin, Histame, Neoprotect, Vitamins and probiotics than I want to think about and it seems like things are just getting worse. Oddly enough I have had good luck with raw cows milk and am still waiting to see if 2X a day gelatin is helping at all. I have been living on raw carrots, lettuce, cooked greens, rice and gf pasta and gf bread. Oh, don’t forget butter! No left overs seem to be well tolerated. Also, I wanted to mention that I have been reading several articles that claim that some probiotic strains do create/release histamine….I am not sure where the science is with this but it is worth noting. I did microbiology early in my career so am always thinking about the microbiome and health anyway.

    I saw that you had mentioned Dr Castells as being someone you have worked with. I am still not clear if what I have is a histamine intolerance vs a Mast Cell issue so am looking to see someone who has a clue about this. I am really tired of educating my docs!!!!

    Thanks so much for all your help and info!
    ~kd

    1. Jess Post author

      Hi Kate,
      It’s nice to “meet” you. You are definitely not alone with having both celiac and histamine issues.
      I have actually never met Dr. Castells, but I hope to get established with her as a patient when my family and I relocate to Boston next year. I was diagnosed with MCAS by my local allergist with a lot of assistance from Dr. Larry Afrin (was previously in S. Carolina but is now at Mayo). He walked us through all of the steps of testing, diagnosis, and treatment via email.

      I have met others whose digestive symptoms have worsened on probiotics and it makes me wonder if perhaps they were taking the wrong strains. My probiotic has L acidophilus and 2 bifidobacterium species and I’ve definitely felt like it’s helped.

      I hope to post an updated post soon on my mast cell issues, but my body is finally back to the point that I can tolerate most foods again, I just need to avoid gluten, soy, and sulfites. I am back to being able to eat cheese, chocolate, eggs, coffee, etc., as long as I don’t overdo things. I am still on an H1 blocker (generic Allegra) 1x/day though, as well as twice a day Quercetin. I believe that the Quercetin has helped. Yoga also seems to help, not sure if it’s a placebo effect or not, but I can’t stop it now!

      If you shoot me an email I can send you some of the documents that Dr. Afrin sent me back in 2013 when we were trying to figure out why I had all of the food intolerances pop up out of the blue: thepatientceliac.com.

      -Jess

  32. brenda thorne

    Hi Jess :)

    Found your article very interesting and informative for those just starting out with a diagnosis of MCAS one thing I wanted to clarify though is how so many articles only discuss histamine as being the only culprit. As I am sure you know the mast cells can cause degranulation of numerous receptors besides histamine ie leukotrines, prostglandins, heparin and more. I think this knowledge is important to treatment when a patient is not seeing stabalization of symptoms just through histamine blockers as was my case :)

    Brenda

  33. Sarah

    I am recently diagnosed celiac 33 year old mama of 4 littles. Still fighting several of the symptoms you listed. I am currently seeing several specialists. Which do you recommend talking to about this? What type of doctor would have the most expertise on this subject? Thank you.

    1. Jess Post author

      Hi Sarah,
      I am sorry that you are still feeling lousy and I can especially empathize with you as a mom of 4!!
      Have you seen an Allergist/Immunologist? If not, I would recommend getting established with one if possible. Also, if you can, I would recommend printing out some information about MCAS and your symptoms so that you can present your case to him or her…this is what I had to do to convince my allergist to test me. Good luck!
      Jess

  34. Terry

    I was diagnosed with Mast Cell Activation Syndrome in 2013 after life long dizziness (Meniere’s?), IBS and food intolerances. When I developed flushing of my face and chest with tachycardia and weakness, I researched my symptoms and asked for consults to an allergist. This led me to Dr. Leiberman (Memphis) and Dr. Fahrenholz (Nashville) who started treatment with Zyrtec 20 /Zantac 300/Singulair/Prevacid twice daily, cromolyn sodium 200 mg vials four times daily before meals and ketotifen 1 mg tablets twice daily.
    My symptoms were at their worst while on a very low carb diet with foods rich in histamine. A gluten free diet slightly reduced my symptoms. Now I am on the AIP (Auto-Immune Protocol) diet and have great improvement by removing grains, eggs and dairy.
    I also have Ehlers-Danlos Syndrome joint hypermobility. POTS may be involved but my dizziness and tachycardia have improved since being on medications for MCAS. I am an RN Rheumatology research coordinator and see the rising numbers of autoimmune disease patients (RA, PsA, Lupus, etc.) first hand. Until research reveals the possible triggers for gene mutation expression and development of autoimmune disease, we should all try to limit our exposure by eating a clean diet and stress management.

    1. Jess Post author

      Terry,
      Yes, I agree 100% with your statement, “Until research reveals the possible triggers for gene mutation expression and development of autoimmune disease, we should all try to limit our exposure by eating a clean diet and stress management.”

      The number of people, especially women, who I am encountering who are my age (late thirties) and have autoimmune issues is really frightening. And what’s more frightening is watching my medical peers prescribe loads of immune modulating drugs, steroids, etc. with absolutely no prescriptions for lifestyle management, stress reduction, dietary changes, etc. We need to somehow band together to make changes in the medial field. I am trying to through this page but my audience is pretty small.

      I appreciate that you took the time to write and share your experience. Thank you!

      Jess

    2. Jan

      Terry,

      Is the cromolyn sodium helping you? I had a bone marrow biopsy done last week for ISM, have elevated tryptase and there is talk of putting me on this due to my limited number of foods and constant diarrhea. I also have CD and I’m allergic to egg and dairy. Meeting with a dietician that will remove histamines too. I had just read that the cromolyn sodium could make you very sick. Any issues with it at all? Thanks!

  35. Nicole

    Thanks for posting information. I was diagnosed with celiac in 2004 and never felt totally well despite eating GF. Then a year ago I got a vaccination and became extremely ill with POTS and MCAS – constant anaphylaxis. I think I have had this issue for years, but didn’t know it. It’s a painfully slow process to reset the immune system and many people are confused about what to do, so the more we share our stories and information, the better!

  36. Birgitt

    Jess,

    Bless you for this post, especially for the comprehensive list of tests needed to diagnose MCAS. I will be taking that along to my doctor next week.

    I have struggled with this disease for years now, finding my life more and more circumscribed and ruled by it. I have had allergists shrug and internists prescribe me Dramamine…of all things. People simply do not believe me when I try to explain my dietary restrictions and symptoms. Just having a name for the disease is a huge, huge relief. It means the medical community has to believe me.

    I’m still reading through the treatments and links. Thank you again though. This post is a life-changer.

    Birgitt

  37. catherine

    @Mary Kloth……….I am very interested in speaking with you since you are in northern california, I am located in the East Bay and I am searching for local doctors. I have gluten intolerance, fibromyalgia and autoimmune illnesses. I suspect that I have mast cell disorder and no doctor I have seen knows about the condition nor about the histamine reactions and oxalate reactions I have experienced since being gluten for the last five years. If you are willing to be in contact with me I will greatly appreciate any recommendations you may offer for resources. I was doing great on a gluten free diet but the diet obviously caused me to increase high histamine foods and high oxalate foods. For a few months this year I had several episodes of anaphalaxis and I don’t believe doctors take me seriously because I have a normal tryptase test. My recent gluten test was normal as well but I have been GF 5 years due to positive g, uten allergy testing.

    This is all very frustrating.

    Thank you Jess and everyone contributing your experiences and knowledge.

    Is klonopin actually a mast cell stabilizer? It does seem to help with weather changes and breathing problems.

    Also, I tried low dose naltrexone which did not agree with me although I know people personally who have found it helpful for autoimmune disease and fibromyalgia.

    Thank you.

    1. Mary Kloth

      Jess,
      Are you able to send me Catherine’s email or mine to her? I would like to reply to her offline. I, too, live in the East Bay.
      Thanks,
      Mary

      1. catherine

        Thank you Mary, I appreciate your reply.
        Jess, I am very willing to share my email with Mary. Thank you.
        I look forward to speaking with you Mary.

  38. kris

    Jess,

    This information is extremely helpful.. my husband has been very ill for almost 9 years, with no answers.. other than the ones we have figured out ourselves.. which are food allergies/intolerance to corn, gluten, dairy, sulfites/sulfates to name of few.. no specialist have been able to help.. he has one Dr who thinks it could be chronic Lyme which most Drs say doesn’t exist.. several years ago a GI Dr did some testing for Mast Cells but nothing showed up…our concern has been that he was non symptomatic at the time.. he has been much stabler in the past several years .. although not healthier.. just not downing benadryl every time he eats and taking trips to the ER several times a year..how can we possibly get him tested for this without setting everything off and still get accurate results.. or should we try and find a Dr who will treat based on symptom? We feel so lost and alone in this struggle.. he would have died if we listened to Dr’s who told him it was all in his head… but we still have no answers.. and for him it has become air borne allergens as well.. restaurants are a no.. family gathers.. (like today it’s thanksgiving are a no) what should we do.. this is such a struggle.. our children suffer along with us because we have to make decisions to keep dad safe…
    So glad to have found this sight tonight… maybe help is on the way…?

  39. Mary Theresa

    I am having dental implant surgery with sinus lift on January 12, 2015. I want to know what local anesthetics are safe for my doctor to use. I will be unconscious for the surgery, then a long lasting local anesthetic and tramadol for post op pain. I have reacted poorly to lidocaine with epinephrine. I am currently taking diamine oxidase and clariitin with good success.

    What drugs can I tell him are safe and what to avoid? I am providing my doctor with links to Mastocytosis Society Canada but it does not give a specific list. It only says lidocaine, etc.( amino amide- type)

    I just want to get through this without drama.

    Thanks for your help
    Mary Theresa

  40. jennifer

    I also have Celiac (dx’d five years ago). Despite my strict gluten free diet, I developed severe MCAS last spring (or at least that’s finally when the flares kicked into high gear, leaving me able to eat only three foods for a while). That stabilized (ish) with zantac, zyrtec, and cromolyn sodium… But I just started dislocating my joints this fall and am now diagnosed with Ehlers-Danlos Syndrome. My MCAS flares precede my EDS flares by a week or two… there must be underlying conditions that tie these all together that just haven’t been identified yet.

    1. Jess Post author

      Hi Karen,
      I had to have the Claritin prescribed through a compounding pharmacy and sent by mail (Crivitz Pharmacy in Crivitz, WI).
      As my MCAS symptoms improved, after about 9-12 months, I was able to transition to Target’s generic Claritin without any reactions, and for the last 9 months or so I have been taking the generic Allegra sold at Costco without any reactions. I hope this helps.
      Jess

  41. catherine

    I am considering taking the Target claritin / loratadine and already purchased it. And, I am already taking low dose prednisone 3 – 5 mg daily. Since prednisone works so well I am not certain a change to antihistamines
    is my answer.

  42. MamaCassi

    I am so curious about this. I am not diagnosed celiac but come from a family of celiacs. In 2001, I got married and my husband pointed out that I got very sick whenever I ate bread (I already had started eliminating it most of the time but LOVED it and would eat it once a week and have violent responses) and I went gluten-free. Since then, I learned how gluten-free I had to be (thankfully without any real options back then, I learned to cook and eat fresh meat and veggies and fruit) and have healed a lot. I had an episode of angioedema in 2000, 2003, 2004 (one a year at the same time of year), and then in 2005 started having it somewhat regularly. It was my eye or lip that would have a histamine response and swell horribly. Usually after I had been around some gluten, but not always a clear trigger at all.

    Of course, I’ve had no resolution or answers on this but started looking into histamine and mast cell disorders because it started happening monthly after my 4th pregnancy. In prick tests, only mosquitoes and honey bees and histamine give me a huge flare up. But my reaction to gluten in foods is highly inflammatory.

    Are there Dr’s who are more aware of how to test and recognize and test for this? I saw an allergist and we tried a combo of antihistamines but basically they made me loopy and didn’t affect the hives. I’m researching this today b/c the swelling can go on for days and often will be an eye swollen shut, or in better locations, an entire forearm distended by swelling. No external cause, and I haven’t been able to confirm a trigger. Off to research more about low-histamine diets. Is the testing suggested above covered by most insurance?

    Thanks,
    Cassi

  43. Katie

    Hello! I am so grateful to find your website!!! I started having random episodes of anaphylactic shock and after having many episodes of this and taking a TON of medicine to keep my allergic reactions away, I finally found out that I have MCAD. It took SOOOO many doctors to get this diagnosed. I’m so glad that I know how to keep it under control now so that I don’t go into anaphylactic shock. Stabbing yourself with an epi-pen is no fun at all!!! It is amazing to me how few doctors know about this but I’m so glad that you are helping to spread the word! Keep it up.

  44. Jenny Cartwright

    Jess your article and experience was a revelation to me. I was diagnosed with coeliac in 2000 after years of inexplicable I’ll health. However even on a strict diet I am still ill, my good days are rare. It’s the brain fog that affects me the most, I simply can’t concentrate some days and have a dreadful short term memory issue. Every symptom you list I experience, I have regular bouts of nausea, diarrhoea and vomiting sometimes anaphylactoid in nature, my GP and I put it down to coeliac disease. I suffer dreadful tachycardia that has only ever responded to an anxiolitic. Reading about this syndrome is like reading my life. I am actually afraid I am not diagnosed with it as I am back to square one searching for answers. I have an appointment with my GP next week, any suggestions about approaching my concerns without sounding ‘neurotic’ ☺️. Thank you for the website and telling your story, I am hoping it helps me too.
    jenny

  45. Kris

    Thank you so much for sharing. I just had all of my testing done today after thirty years of unexplained symptoms, that make so much sense now. I am curious about your problems with corn starch. I get migraines from corn starch and have stayed away from corn starch and all corn products for years. Do you think this is a manifestation of celiac (I am gluten sensitive for sure) or mast cell disease? I am now wondering if I may be able to eat corn in other forms than starch, which would make life so much easier. Corn is definitely harder than gluten.

  46. Kathy

    Jenny, have you been told to go on a low-histamine diet? I have Celiac, but still have bouts of anaphylaxis. Tentatively diagnosed with MCAD. At any rate, the low-histamine diet does seem to help a bit (in addition to avoiding gluten).

    1. Jenny

      I have an appointment with an immunologist now so will see, if not diagnosed I think I will try going onto low histamine diet, do you take antihistamines as well? I think there is more to celiac disease than we realise. Lots of new research in this area as well. I do feel a bit of a hypochondriac at times with all these niggling symptoms.
      Jenny.
      ps thanks for the comment

  47. Jess Post author

    I apologize to all of you for ignoring this comment thread for a while, I have had a lot of time constraints that have, unfortunately, kept me away from this page. I appreciate all of your comments and your willingness to help each other out in the interim. There are still so many unknowns about MCAS/MCAD.

    I am currently in the midst of working on a second post on MCAS and celiac. If any of you have suggestions for content, research, links, hypotheses, personal anecdotes, etc to include in my post, please email me at thepatientceliac@gmail.com by the end of Feb 2015.

    Thank you for your patience and understanding.

    Sincerely,
    Jess Madden, MD

  48. Nancy

    I was stunned reading your article! Our active, intelligent, athletic 16 year old granddaughter started having anaphylaxis, breathing difficulty (esp. when playing competitive sports), syncope, nausea, GERD, & stomach cramping 18 mos. ago. She has seen her pediatrician, cardiologist, allergist, gastroenterologist, pulmonologist, breathing therapist and now psychiatrist. She’s been diagnosed with severe allergies and has been on allergy shots for a year. She also was diagnosed with mild asthma and vocal chord dysfunction, ISB & GERD. She is on medications for all of these issues. Her seasonal allergies have improved, but nothing else has. She had extensive blood work and heart testing as well as a colonoscopy. All of that was normal. Her anaphylaxis is increasing in frequency even though she avoids known triggers. The same is true for the stomach problems she has. She has now just been diagnosed with stress, anxiety and major depressive disorder. We’ve been trying to understand how all of these issues could start so suddenly and be so difficult to control. Apparently none of these many specialists that she’s seen have suspected MCAS, but from reading your article, it certainly seems to be a possibility. Do you have any suggestions for a physician in or near Greensboro, NC, who might work with her to see if MCAS could be the problem? She is still a high performing student, taking 4 AP classes plus 2 other courses this year, but it is a constant struggle for her. Her parents feel like they’ve tried everything to find help for her. Any assistance you can give us would be so greatly appreciated!

    1. Jess Post author

      Hi Nancy,
      I am sorry to learn all that your granddaughter is going through.
      If she is established with an allergist, and he or she is someone who your family trusts, I would ask that all of the blood and urine testing for MCAS be ordered. If her allergist is unable to do the testing, she may benefit from being seen at one of the academic mast cell centers. If I’m remembering correctly, there is a link of mast cell centers on the The Mastocytosis Society, Inc. website.
      Jess

    2. Sharon

      So sorry to hear about your granddaughter. Allergies to foods can lead to intestinal inflammation which can lead to severe nutritional deficiencies which can lead to the psychiatric symptoms you mentioned. There are tests, like the Genova Diagnostics NutrEval, which can test for these. Deficiencies in B vitamins, vitamin D, antioxidants, amino acids, zinc, molybdenum, etc. can cause mild to severe psychiatric symptoms. If these are found, then you’d need to find hypoallergenic nutritional supplements that can help. I believe Genova Diagnostics is in NC, you can contact them to find a doctor who uses their tests.

      1. Nancy

        Thank you, Sharon and Jess, for your helpful suggestions! We’ll definitely try to follow up. After talking with a relative who does research in auto- immune disorders and has contacts at NIH, we have gotten, at their suggestion, a baseline tryptase level (which was normal) as well as written orders for hospital to draw for a tryptase level within 3 hrs. of anaphylaxis. All blood work thus far has been normal except the T-3 uptake was a bit low this time. No testing has been done for vitamin deficiencies, so that’s definitely worth trying. Again, I can’t thank you enough for your suggestions!

    3. Meredith

      Hi Nancy, (& Jess!)

      I recently stumbled upon an article posted on Facebook from Yasmina, the Low Histamine Chef, which gave me a huge a-HA moment. I’ve had a wide assortment of medical issues for much of my life that I’ve never been able to figure out. After reading that article and digging into everything I can about high histamine, mastocytosis, and mast cell diseases, it seems very likely that MCAD or mastocytosis may be my diagnosis.

      I’m located in WNC and found an allergist in Statesville who specializes in mast cell diseases. He did his fellowship at NIH focused on mast cell disorders prior to starting his own practice. I have an appointment with him in a few weeks so I can’t say for certain that he’ll be able to diagnose this mystery that is my body, but my experience with his practice thus far has been outstanding. From looking at a map, it appears you’re located a little over an hour from Statesville, so perhaps he would be a good resource for you and your granddaughter? I’m driving 2 hours to get to him so an hour doesn’t seem like much at all to me. :)

      Here’s his info:

      Dr. Frank Lichtenberger
      704-873-5055

      http://www.allergypartners.com/statesville/lists/providers/Provider.aspx?ID=19

      Good luck!

    4. Jessica

      Nancy,
      Dr. Litchenberger is in Statesville, NC. He’s a mast cell researcher and allergist. He researched with Dr. Lawrence Afrin at NIH. He’s a mast cell nerd so to say. I love him. He’s so nice and he listens!

  49. Sheila DeRuzza

    Anyone living in South East Florida with doc recommendations on here, please post. Thank you.

    1. ACurtis

      Hi Sheila, I don’t know a doctor but I have a friend who lives near Disneyland (FL) who has Celiac, has put about 10-12 autoimmune issues into remission, has Multiple Chemical Sensitivities, and just found out she has Lyme disease and has FINALLY gotten a doctor who is seriously testing her for a multiple of issues; she just got a complex case manager. She might be able to give you names of doctors in that area who work with chronic cases. She is also a Certified Holistic Health Coach (as am I). She is rather busy at the moment taking care of her own health, but if you’re interested, I’ll see if she’s interested in corresponding.

  50. shaunamom

    This article by Dr. Afrin just came out last year, and i thought you might be interested to have it in your list of good MCAD resources. :-) The entire article is currently available in pdf form through the link to a page on the World Journal of Hematology (below).

    http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf

    It’s been a very nice resource, IMO, as Dr. Afrin lists a lot of the most up to date info. on testing required, symptoms, etc… in one big package. :-)

    1. shaunamom

      Oh, and I nearly forgot – I noticed you mentioned the symptoms from histamine released from mast cells. I didn’t know if you’d yet looked into the other symptoms that can come from the other substances that can be released.

      As I understand, there are at least 60 other substances in mast cells that can be released for MCAD/MCAS folks, when their mast cells trigger. Heparin is one example, which for some mast cell folks can cause excessive bleeding during menstrual periods if they are triggering. I’ve experienced that one in other ways, where a tiny prick of the skin from a specific trigger will initiate golf-ball to tennis-ball sized bruising around it.

      So it seems that another reason our symptoms are so crazy is that any of these substances can be released, in any combination, from whichever mast cells are misbehaving at the time, which of course increases the variety of symptoms that can occur. :-(

      1. Jess Post author

        Hi Shauna,
        Thank you so much for providing this additional info. I’m pretty sure that you and I have interacted on some other celiac and MCAS forums in the past :)
        I have had the best of intentions to write an updated, part 2 MCAS/MCAD post, but I have not been able to dedicate the time due to everything else happening in my life right now.
        But, if you or anyone else would ever like to write a guest post I would be more than happy to share it on here. No pressure, but please let me know if you have any interest.
        Jess

  51. Anna

    Hello! My name is Ann. I’m from Russia.I found your site on the internet by chance. I read your history. It’s great to run the race. I really love running. But unfortunately, my daughter can not play sports, unlike me. My daughter has sore knee joints, asthma, of allergic rhinitis and eosinophilic diffuse gastroenterocolitis and gluten intolerance. The daughter of a gluten-free diet. Small wheezing lehko. I do not believe that we have different diseases. I think we have a syndrome. Syndrome MCAS. but unfortunately in our country there are no doctors who understand this issue. I’m looking for information on the Internet. Unfortunately labolatoriya and who do all the necessary tests are not available. Sorry, but you cann’t help me understand this question? or to say, where to go. My daughter’s name is Karina and her 8 years. Thanks.

  52. CC

    Hello Jess- I have currently been diagnosed with MCA disorder, disease, syndrome. My issues began back in Nov. 2011 when I turned 50. Although I could go on and on about my experiences, I have 2 things that I have found to be very relevant. Firstly, I found that my MCA begins around a week before or the week of my scheduled menstrual cycle. No matter what I eat or not eat at all the cramping and contracting pains begin and I have diarrhea the longest has been 6 weeks, the shortest so far 4 days. Secondly, when I do have the MCA attacks of course you do not want to ingest anything including meds/Rx’s, but I have found that chewing 2 capsules of vitamin D3’s helps a lot. Calming the cramping, contractions, diarrhea and headaches so that I can eat (white sandwich sliced bread) and sleep for about 2.5 hrs.. I do take the Cromolyn Sodium, I have been upped to 2 vials 4 times a day. I take the Cromolyn Sodium even if I do not eat. When I have an attack, I tend not to take any of my meds., but my MD encouraged me to keep taking the Chromolyn Sodium. My other MD’s (local) Nurse suggested for me to take Boost or some kind of liquid supplement. I am very sensitive to sweet and salty so Boost was out – but I did find a liquid drink that is high in protein and is quite delicious. The protein drink I prefer is Atkin’s French Vanilla. I fill a large glass with crushed ice and add water to it also. If I want a different flavor I put a dropper of a natural oil or extract. I have had a Gastric bypass (Roun Y) in 2003 and although I hardly eat I gained an enormous amount of weight. When I get attacks I gain weight instead of loosing which you would think with all the visits to the toilet and not eating. I have been on an elimination diet since Jan. 2015, I find that when I introduce something that is on a MCA list my reaction is somewhat lethargic, hot flashes, very dry (almost burnt) facial skin a feeling of fullness that cannot be processed. And several times I throw up. I am allergic to several things I had never been allergic to before food, animals, plants, herbs, medications, I joke to my friends I am allergic to life. Even though I still get nauseous again this is also around the time I should be cycling. I have been Menopausal for the past 3.75 yrs now but I still keep an alarm on my computer as an experiment to all of this sickness. I also drink water with electrolytes in them balancing with just regular filtered water. I moved from the Boston area in 2009 down to the Southeastern Coast. For other health reasons, and now I am finding that the sun is lethal to me which also was a big change about 3.5 years ago. I hope this information helps someone as I know I have tried things that people suggest and it just didn’t work for me. I used to love to cook and I now have very little interest. It seems that my taste buds have changed sweet is too sweet and savoy is too salty. What I do is take one day at a time and do what I can when I can. I also have Mixed Connective Tissue Disease so I do try to balance both illnesses. Oh, since I have been on the elimination diet my brain fog has gone away! And I love organic Romaine Lettuce – I can eat a salad one day after the last day of being stricken by MCA. And it does make my whole insides feel better! Who’da thought? I hope my comments help someone. It is all trial and error. Feel Well and the Best to all! CC

    1. CC

      Update – 9/28/2016: I have been monitoring my symptoms, foods, weather, hormonal changes, etc.. Since this last post and here are somethings that have helped me. I think my body is trying to put the MCAS in remission, but since my last post I have become the “expert” for (all) my MD’s….I also am lucky enough to have had a Pediatrician move next door to me who happens to be aware of Histamine Intolerance/MCAS/etc….Which really helps my spirit and anxiety that this darn disease seems to attach itself and cause major flare-ups. Please everyone if anything make certain you are carrying around an EpiPen at all times and make certain you inspect it (to be sure it’s not cloudy) and your refill Rx is still valid. I say this because during the EpiPen $$ outcry, I checked my pens – they were cloudy, my Rx was outdated, I had just seen my Internist, but I was going to see my Allergist and I have been actually (through my year’s worth of monitoring my diet and along with all of the self analysis mentioned above) and told my Internist I feel I could be in remission. So here goes what I have measured in my rough journey with this darn disease.

      1. Read an article in the NIH regarding Bitter Melon shown to reduce inflammation in lab mice with MCAS. I tried the Bitter Melon for 4 months straight – with no result of lowering inflammation for me – the human lab rat. You can research Bitter Melon – it is an actual food you can get or grow to eat. The Bitter Melon did not reduce my inflammation or reduce my monthly flare -ups but it also did not set up a flare up or any indication(s) of a flare up for me. So I eat it on occasion as one of the few foods I can ingest and retain right now. Chinese markets sell “pickled” Bitter Melon – but do not ingest – because of the vinegar/pickling. You will definitely have a negative experience if you ingest the pickled type. I eat it fresh (steamed) or I dry it up and blend it in a MCAS smoothy.

      2. Prebiotics, Probiotics; I do not have an issue with Prebiotics (raw fiber) while not going through a flare up. I can eat raw fiber as soon as the next day after dealing with a flare up and be fine! It’s nice to go from terrible diarrhea to regular in less than 24 hours after a flare-up. I have found that I actually crave a salad on the last day of an attack.

      3. After dealing and monitoring this for over a year I know my MCAS flareups are hormonal. I have been post-menopausal since 2011 (when my lovely journey with this disease began) and have kept a record or alarm on my computer as to when my old “cycle” should come. My flare-ups come around the time + or – or within 5 days of my old cycle. Now, I have had a Thyroidectomy in 2010 and when this all began for me – which I was told I was in Peri-menapause my hormone levels were checked every 3 months and in late 2011 my hormone levels began to spike and lower which drove my (old Md. of 30 yrs. with me) crazy. She could not understand what was going on and even asked if I had been forgetting at times to take my daily Levoxyl. Until she began checking me every 2 months, the blood tests would spike or lower randomly. She had no answers and since I moved down South it was frustrating for her to monitor me as she had for over the past few decades. This was again in 2011 and prior to my diagnosis.
      This disease uniquely attacks responds/remisses to every individual who has been diagnosed with it. Md.’s have too me that it is genetic and I probably have had reactions to this disease all my life. As I look back on my life I do believe this is true so look back on times that you were sickly, very sick or had radical things happen to your bio-chemistry. I do remember having terrible migraines when I was a child pre-puberty and I was diagnosed with them again in 2011 (again prior to my MCAS diagnosis).
      We all have hormonal changes whether female or male so look back and see if you had issues around anytime that would have been “hormonally challenged” for you. I have monthly flare-ups which I have been able to lessen to 24 hour flare ups . I have reduced my Cromolyn Sodium to only 3-5 days, and reduce my daily intake to once or twice a day with the 4 times a day during my 24 hr flare up.

      3. I had read two things that also helped me; I think one was a post from this blog site, the other fem the NIH. The first was beware of compound contents in your Rx’s, the other was the Ying/Yang effect between seasonal (outdoor) histamine(s) and food histamine(s) causing or sensitizing MCAS flare-ups. I have found that awareness of both has helped in decreasing my minimizing my flare-ups to 24 hours, as I did have a reaction to a generic Rx – make certain your Pharmacist is aware of your histamine intolerance because if the med. brand change(s) – so can the compounds/additives in the medicine. I had a severe reaction to Rx. ear drops which were compounded with Vinegar as its additive. I had been using the ear drops for 10 days, using them as Rx’ed for maybe 5 of the 10 days. I had a full blown “mind and body gutting” by putting 2-4 drops of the ear drops in each ear per day…….Just a tiny bit can cause a HUGE reaction.
      Which has set me back 2 months so far since I thought I was in remission (4 months of only having a 24 hr. flare-up). I did have hopes and was looking forward to possibly going into full remission.
      The other is the seasonal histamines, food/nutritional histamine changes. I have found in the past 3 seasons (last winter, spring, this summer) my food intake along with my outdoor allergies, along with the weather changes ( I live in the South) does effect the aches, pains, inflammation that goes along with MCAS.
      4. My bone density has increased even though my food intake is poor. I am able (at times) to ingest without incident small cups of Yo-baby Full Milk Vanilla Yogurt (comes in a 6 pack). I also drink coffee even when I have an attack I take my coffee with extra half and half in it. My bone density is 3x’s what it was the last time it was checked.
      5. I totally eliminated pretty much everything in my diet – I eat oatmeal, if instant/processed then iorganic store brand has been fine. Potatoes, typically baked Russet type since I am really unable to eat much of anything else. When I flare up, I do not eat the skin (considered a prebiotic). I will drink Ocean Spray Cran-Grape cocktail with filtered watered 2/3 to 1/3 measure. I also drink Powerade drink flare-ups, Spring and Summer 1/2 to 1/2 measure. I “cut” all my drinks now with filtered water, as I used to drink sugar free drinks and found that they are also assist and attained in my flare-ups.
      6. Since flareups have been reduced, I have found that a week before my flare ups I sleep later and deeper. This helps me signal my flare up and reduce the anxiety that follows or is created or sensitive due to my anticipation of the beginning of the flare-up.
      7. This Spring/Summer was a hot one here in the South so I was concerned about what protein I could eat when I only wanted to eat Organic Romaine with fresh local (Kirber/Barrel/Pickling/Baby) Cukes. I discovered I could eat crumbled bacon and/or Fresh Mozzarella with dressing that I purchased from the refrigerated aisle or one I made (whole milk plain yogurt/sour cream, filtered water, tarragon, basil, rosemary, whipped with a fork). Also, being from New England I found my local grocery store sells fresh frozen Lobster meat. A 4 oz. packet which I can use twice then have to throw out or give away the rest. I use the claw or knuckle meat and sprinkle it over my salad. I have tried local fresh shrimp, scallops, only to have a reaction.
      8. After seeing my Allergist, we discussed the NIH doc. on the Ying/Yang effect of seasonal outdoor histamines, pet and other allergies and my intolerance or triggers for a flare up. I take an Allegra in the AM, Xyol 5mgs. 4 times per day and Rx Flonase before bedtime. So I will reduce my antihistamines to the Xyol 5mgs. 2x per day 7 days prior to my scratch test appt.. With hopes that anything I do react to we can access the situation and modify my allergy med. intake as well as being aware of food sensitivities. One thing I was told is that I should never go without an antihistamine and I am afraid of causing a flare-up during those 7 days and not being able to make the scratch test spot..
      9. After my Flare-ups in late winter, early spring I noticed my Eusthacian Tubes in my ears were inflammed, making my ears very itchy and runny with fluid. I have experienced this in years past (prior to 2011) when I could eat/drink anything and I thought life was normal. My Md. at the time ordered Baush & Laum (?) ear drops which are primarily for swimmer ear. It did the trick back then and when I the ear thing happened again I feel it is a reaction to something (seasonal or food – haven’t figured that out yet) – but now it triggers a flare-up. I write about this Rx again because I feel it is really important to make certain that generics can change, compounds can change so be sure, if you need an old remedy that the compounds n that remedy has not changed. It has taken over two months to get back to where I was prior to what I call my Poisioning myself with the use of the generic ear drops containing the vinegar.
      One thing that happens to me is that I find my smelling senses are messed up when I go through a flare-up. I am sensitive to smell and smell things that others don’t so when I thought I smelled a waft of vinegar, I though I was just picking up on say the vinegar in yellow mustard that someone was using and the smell because I was so sick was sticking to me. This is why when having a flare-up do not dismiss anything and ask others if you feel something is off.
      10. I also changed all my soaps and shampoos to No Sulfates in my shampoo and conditioner. I use Ivory Soap and Johnson’s Baby liquid soap for my face. My skin has gotten better, although I can still rip off huge pieces of skin (like after a sunburn) from a little flake of skin on my face. I also had skin rashes on my skin (exposed and non-exposed)n the Spring of last year which required 2 Rx ointments to get rid of.
      11. If you live in US and are on Medicare, every Rx. I have been required to fill has been covered. Some though required further nformation from the Rx’ing Doctor.
      12. I have realized also that I tend to ramble as well as repeat myself…..I don’t know if it is because of the years of severe brain fog/dementia caused by the flare-up(s) or it is my age. Either way, my brain fog/dementia, blurry eye vision has extraordinarily reduced (thank goodness!). Anxiety I think has gotten more intense as I continue to experiment and anticipate the experience of the experiments. Good news is I am better than I was a year ago, even with the set back.

      I hope this information will help you all or encourage some to analyze or study past with present habits.
      I really feel I have come a long way since last year and hope that I have turned the corner into remission.

      Please remember to check your Epi-Pens as since I have realized just what Anaphyiaxiss Shock is, I have gone through and gotten close to going into it many times in my life. With what I have been experiencing over the past 5 years with severe MCAS, it’s scary but a very possible reality.

      Peace and Better or Continued good health to all!

  53. Pingback: WWW Links for research | Mrs R Rites

  54. Lisa Bloomquist

    Thank you so much for this informative post!

    Fluoroquinolone antibiotics – cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin, and a few others – can trigger mast cell activation. Please see this post, the links in it, and the links from Lisa in the comments, for more information about the connection between fluoroquinolones and mast cell activation – http://floxiehope.com/2015/10/01/can-fluoroquinolones-activate-mast-cells/. Fluoroquinolones can cause multi-symptom, chronic illness in susceptible individuals. I believe that mast cell activation is a big part of the reason why.

  55. Heidi

    I have found that if I take Diamine oxidase (DAO), I can tolerate the sulphites in cheese.

    Diamine oxidase (DAO) is the main enzyme for the metabolism of ingested histamine.
    I learned this from Histamine and histamine intolerance :
    http://ajcn.nutrition.org/content/85/5/1185.long

    An easier site to read about this is :
    http://foodallergies.about.com/od/commonfoodallergies/p/histamineintol.htm

    I’ve had strong reactions to sulphites. I’ve reacted to brewer’s yeast. I reacted to dried fruit with sulphites but not other dried fruit. I have also reacted to cheese. When I cut out histamine containing foods (like tomatoes, strawberries…), the only change that I notice is that my skin does not turn red as easily when rubbed. Likely, there are more histamines in fermented foods that also have sulphites.

    The brand of DAO that I have tried is Histame. There are several other commercially available products with DAO. I have bought it from Amazon because it does not seem to be available locally.

    Do you take the molybdenum in a pill with other vitamins and minerals? I have a histamine reaction to iron and vitamin D. Vitamin E makes me bleed even in between periods. I have not found molybdenum available in a pill, nutritional shake or bar without these. I have been eating foods that have molybdenum.

    I take antihistamines (Reactine – the allergist said that they would not put sulphites in antihistamines because they are known to cause reactions ) for my reaction to iron. For vitamin D, I get it through my skin with a UV lamp. My reactions give me cold like symptoms, itchiness and irritability. I am not celiac, but like you, when I had to deal with the one problem of taking iron other things got worse. I, also, tried quercitin but did not notice any changes.

    Thank you for sharing your information, Jess.

  56. Sharon

    Hi there,

    Molybdenum is available from Thorne in 1 mg hypoallergenic capsules. I think Douglas Labs makes a 500mg version. You might look into taking it with vitamin B1 and taurine to get your transsulfuration pathway working to clear sulfur better.

    Ben Lynch has some interesting work on clearing histamine, too. There are genetic mutations that can affect this, DAO, HNMT, and others.

    And you may want to look at the ingredients in your antihistamine, Reactine. The 2 dosages I found online had either cornstarch or lactose as ingredients… I found that the allergens in antihistamines were why they didn’tc fully help me. Very vexing…

    Good luck!

  57. CC

    Hi and Happy Holidays to All –

    Just wanted to give an update and let you all know what has been working for me as I keep up with my Elimination Diet as well as other news I have found since my last post.

    I read the NIH website a lot when I have my monthly attacks and cannot sleep – so check out the NIH website if you haven’t regarding MCAD(or “S” (for Syndrome)). One article I read was from a report from China – the Center for medicine or something like that – I did look up the Institute and it is centuries old for studies in medicine. Anyway, they had done some research/clinical study regarding Mast Cells Disorder in which they fed lab mice a “Western Diet”, then gave/introduced the lab mice Bitter Melon in their diet. Well, they found that the Bitter Melon decreased inflammation in the lab mice. So, with that I ordered Bitter Melon through Puritan’s Pride which I found as a very good website for supplements/herbs.

    Now, I just want to let you know that every and all the research I did on the “properties and benefits” of taking Bitter Melon suggested that you check with your Md. prior to taking so as to NOT interfere with anything you currently are taking.

    I did order it and I do take it after eating (3x’s per day max) I have gone through a bottle of 100 which I take 2 capsules 3x’s per day (or 6 capsules per day 16 days) and it seems to be working!

    I go to my Internist for my yearly check up next week and will find out officially if my scale is accurate. But the quality of everything is better……Could be a combination of the elimination diet that I have been on since January and my metabolism catching up but my skin, activity, clarity, fatigue seems to be getting better since I have been ingesting the Bitter Melon.

    Plus, I have not been able to eat/ingest /digest cheese prior to but I have not had an issue – as long as the package has just been opened. I am okay to eat the cheese from the same package/chunk the next day also (I am talking Sargento, Cabot, brands). BUT after day two I have a reaction and have to throw it away.

    Also, I eat Russet Potatoes-pretty much live on them as I can not tolerate much else. Although I do not suffer from Celiac’s as I also eat thin white bread and freshly baked Italian Pane’ (thank goodness!).

    I also wanted to share that there was a “Health Watch” news article of a young man that lives in Utah who is “Allergic to all food”. Well, I watch the noon news feed and he has Mast Cell Activation Disorder. I quickly emailed the local station who broadcasted the article/interview and requested the feed to post it. Well, because the news station in Utah that originally broadcasted the piece was not an affiliate to my local station they could not send me the link to the feed. But they did send me the whole script/interview with all its “”‘s. but I do have it if you would like to read it. The young man is only 19 and has been suffering with MCAD(S) since he began going to school as a small child.

    Well, I hope this information helps and that you all have wonderful holidays and a happy less painful New Year!

    CC

    1. CC

      I just sent/typed up a long update on my first posting (I think it was July. 2015). Please read as I have Guinea Pigged myself for over the past 9 months. I think as well as hope it can help some of you.

      Peace and Good Health!
      CC

  58. Tiffany

    I need help!!!! I have been having SEVERE hive outbreaks everywhere! !!! I feel like I am being literally TORTURED :( I have an appointment with the Dr on December 31st and today is the 16th….I’m afraid to take any antihistamines in case they might affect any results or what the Dr sees…I have welts that keep popping up as well as bumps and large rash masses….could just take an antihistamine and still be okay to trust what the test is on the 31st? I have pictures. ..it’s the worst thing I’ve EVER dealt with:(

  59. Hope McCulloch

    I just wanted to add that Lyme does activate mast cells that cause histamine levels to get high which in turn causes all of the problems that high level of histamine can cause. My life has been consumed with the war on Lyme since 2003 when it derailed my sons’ life. Th idea that high histamine levels are the cause of many of the problems Lyme patients have to deal with is just getting out there. Many of theses have been mentioned here. Histamine can cause the blood brain barrier to have holes leading to inflammation in the brain for example. My son has had cognitive issues due to inflamtion in his brain that have gotten better with Lyme treatment but healing the BBB would be a big help. Many lyme people have POTS syndrome, my son included, where the dilation of the blood vessels is a huge issues. I read that histamine can cause the dilation. I think that if you are having these mast cell issues it would be wise to looking into Lyme testing. But you HAVE to see a real Lyme doctor not just a doctor who treats Lyme. Look for a name on line at places like Lyme Research Alliance.
    Knowing this has been a huge help for people like my son. He can try to manage the histamine which could greatly reducing many of his issues while killing off the Lyme which hopefully will end the mast cell issue. Good luck to all of you. This is a long and often lonely road to travel.

    1. jeannie s

      Hi Hope. I hope your son is doing better. I have been battling the insane war on Lyme (and Bartonella and Babesia) for almost three years, and it was just recently that a paramedic suggested that i may have a seizure disorder triggered by lyme, and that it may be the root of many of my neurological issues. mind you i have been to about ten of the best neurologists in the greater ny area, and no one can ever find anything. my research on the connection brought me to MCAD, which brought me to this site. I can pretty much pick up who on here has undiagnosed LD, due to their multiple autoimmune disorders, coupled with POTS, MCAS, EDS.

  60. mindy west

    I have a 16 year old daughter that started having hives and swelling triggered by cold initially, it has since progressed to triggers of exercise, cold, heat, pressure or friction on the skin, stress or emotional instances, he gets severe headaches, fatigue, she has lost about 15 pounds in the last 2 months, she has a history of respiratory problems as well. we have seen allergy specialist in the past, she also reacts to the typical medications such as zyrtec, claritin, allegra, with hives as well. benedryl does help to some extent. she is very active in sports but this condition is impacting that as well as other aspects of her life. I am lost for how to help her or where to turn. the more I read about MCAD, it literally describs her!

  61. Lydia

    I like this post. I, however, disagree that MCAD is less severe than SM. I have had MCAD (confirmed negative for SM with a bone marrow biopsy). Without Xolair monthly injections, I could experience anaphylaxis at any time, especially with increased activity, infection, or stress. I also had someone recently reach out to me that has been in ICU multiple times in the last few months and has even coded due to anaphylactic shock. He also tested negative for SM.
    I do find it interesting that the Gastrocrom has been successful in helping with the brain fog. My allergist prescribed it, but I have not been able to find a pharmacy that can get it. Where can I get it?

    1. Jess Post author

      Hi Abby,
      I am confused by your comment and pubmed abstract that you shared.
      In both MCAS and mastocytpsis, tryptase levels are elevated above the baseline.
      In mastocytosis, the trypase levels are usually above 20. This is per multiple medical resources, including The Mastocytosis Society, that I trust as a source of valid, up to date information about mastocytosis. Here is a link from their page: http://tmsforacure.org/patients/mastocytosis_explained_2.php.
      Jess

  62. Ansley

    Hi, I’ve had Celiac Disease for almost 5 years now and have been completely gluten free since I found out. I wasn’t born with it; I got a really bad case of mono and that “activated” my Celiac. Shortly thereafter, I was diagnosed with Postural Orthostatic Tachycardia Syndrom (POTS) and I haven’t been able to keep it under control. Recently, I was also diagnosed with a rare connective tissue disease Ehlers-Danlos Syndrome. Through all of this, I still have headaches that are unanswered for, stomachaches that are unanswered for, and for some reason my stomach cannot handle sirloin type steak or water– not cold, warm, lukewarm, iced, tap, filtered, bottled, nothing unless it’s like lemonade or tea. I also have an allergy to “grass pollen” but now I’m wondering if it could be MCAS. Daily I battle with fatigue, nightly I battle insomnia and I can’t seem to win for losing. I was just wondering if you would suggest I get tested for this and if so, who (what kind of doctor) do I see about this since it’s so new.
    Thank you!
    *I am a 20 year-old female college student who welcomes any and all advice!

  63. Nicole

    Hi Jess,

    After a year and a half of thinking about it, I finally saw a mast cell specialist this week. He says that I do have activation due to my dysautonomia caused by autoimmunity (Sjogren’s). The first thing he wants to try me on is Mestinon. (I already take fexofenadine daily and have for years due to allergies.) I am considering it because it sounds like the parasympathetic activation would be a good thing for me.

    I have one question for you. I seem to have malabsorbtion issues caused by MCAS (unless I have seronegative celiac instead of NCGS, as you have mentioned before). Would adding an H2 blocker help me gain weight if this is the case?

    Hope you’re well!
    Best,
    Nicole

  64. Roy Smith

    This is good info; my wife has MCAS as diagnosed by Dr Afrin while he was in South Carolina, he has since left the university and there is no one that we have found i the south east who is working with MCAS. DO you know of anyone with in reasonable travel distance from Georgia that is making difference in the lives of patients with MCAS.

    thanks
    Roy

    1. Mrs. Bishop

      Dr. Theodore Lee at the Peachtree Allergy Clinic in GA is who dx/is treating my MCAS. You will not regret seeing him.

  65. Cheryl

    Thanks for all the info, I two have been diagnosed with MCAD, as of Aug. 2015. I am 57 yr old, I my first time was driving my car and pulled over because I felt like I was going to pass out, my hands became very burning. within 1 min of calling 911 I passed out, didn’t have my car in park drove 1 mile down the road crossing the center line and not stopping until it hit a pole in the ditch . I was unresponsive about 20 min because my blood pressure went very low. local ER could not find any answers to why . 2 wk later woke up with the burning palms of my hands. walked down stairs called for help stood up and passed out again for about 10 min. still no local Dr could give me any answers. 2 mo. later once again I was woke up with the burning itching in the palms of my hands , my Dr did say if it was to happen again I was to just stay laying down so my blood pressure wouldn’t drop. so I did for about 5 min but I had to get up because I felt like I could breath. I stood up and told my husband I was going to die. he walked me to the car and after one step that’s all I remember, he said I fell to the ground. by breathing became very labored. then I did stop breathing. (thank God my husband and myself are Emergency Medical Tec.) because he had to put a airway in me and I started to breath. I was taken to the ER and they still weren’t sure. they had been mont. my heart because they all thought that was the cause . Well after all that I asked my family Drl to get me into Mayo. within a week we were there. and after many teats I was diagnosed with MCAD, I now am on many anti histamines , anti inflammatory and follow a Very stick anti histamines diet. I have been feeling very good. I go for a follow up with Mayo in Sept.

  66. Sandra Seaman

    Great article. I have been figuring this out on my own for 7 years since I had chronic hives for 3 years. I studied homeopathy and then the Body Code energy healing system in my journey to find answers when I couldn’t find help from my doctors. So interesting, I have treated myself for all that you mentioned – severe gluten intolerance, issues with sulphur, and also issues with ammonia building up as well as other food intolerances. I think it is all linked together. I muscle test and when I try to sort out what was at the root of all this for me, I get that the gluten issue is the root, then the damage to the small intestines has caused a cascade of other problems including the histamine intolerance. I have been managing with homeopathic remedies. Have pretty much resolved digestive pain. Remaining symptoms are heat and flushing and muscle weakness/sometimes pain. Still workin on it but it is somehow nice to have a name for it and see it acknowledged.

  67. Sharon

    Sandra,

    Sounds like gluten is only one of our issues. Sulphur, ammonia, histamine and your other symptoms may very much be related to your methylation pathways, the genes and enzymes thatvdrive them and a lack of the right cofactors causing toxins to build up.

    High histamine is related to low folate. : you’re likely deficient in folate or B12 or both, and possibly B1, B2, B6, magnesium, molybdenum, and/or certain amino acids. All of these work together to help your body get rid of toxins. If you’re missing ingredients or if you have certain genes, you may build up ammonia, sulfur and other toxins making you sick in the short term and really sick with cancer, cardiovascular or neurological illness in the long run.

    Tests you may want to look into are Genova Diagnostics NutrEval and the 23anime test with interpretation of methylation genes. Then, based on what you find, its a matter of patiently working to supplement what’s missing a step at a time to get everything running.

    Find a good functional medicine or naturopathic doctor to help you.

    1. Sandra Seaman

      Thank you so much for taking the time to answer, Sharon. I am pretty committed to figuring this out in a more alternative way. Have already had genetic testing (quite a while ago with Amy Yasko) and I do have/had lots of methylation and sulphuration issues. I feel like I have made a lot of progress with much of that. Now the histamine seems to be the main issue. I will keep plugging away with my homeopathy and Body Code – and diet changes and supplements as needed, as – so far – they have been the greatest help for me.

  68. Lisa

    Where do you get a compounded corn starch free (no sulfite) Clariten? I work in a pharmacy and cannot find a source for pure loratidine powder. Thanks for you time.

  69. Alison

    Great resource, thank you so much for this. I have Lyme and have only been able to eat beef and seafood for the last 5 years. I’ve tried just about everything (right down to FMT) trying to resolve the food issues, but only had luck for a very short period of time about 3 years ago. At the time I think my nutritionist had me trying monolaurin to treat SIBO and Benedryl. After a few months of adding those in I was able to eat berries and seaweed again, but because I hadn’t tasted anything sweet in years I began binging on them and re-fed the infection. I also started reacting to Benedryl and had to stop taking that. Now that I’m learning about MCAD I’m wondering if it was the loss of Benedryl that mostly led to the berry/seaweed intolerance again.

    Anyway, how long after you started taking antihistimines did you attempt to re-introduce foods?

    My lyme doc started me on compounded Claritin, cromolyn sodium, and quercitin yesterday. I’ve been having severe issues with my hands lately (swelling, joint pain, raynaud’s/numbness, chilblains) and my docs have narrowed it down to Undifferentiated Spondyloarthropathy or Undifferentiated Mixed Connective Tissue Disease. My lyme doc told me not to get my hopes too up on this MCAD resolving my food issues because he thinks the food/stomach issues might more likely be an early warning sign of connective tissue disease. But because the treatment is antihistimines and I need those for seasonal allergies anyway we figured it wouldn’t hurt to try.

  70. Bruce

    Dr. Afrin has a new book out (March 2016) “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”. The glossary is well worth the price of the book. He goes through several case histories including his first diagnosis of MCAS and how he finally figured out what was causing these seemingly unrelated symptoms. He discuses various treatments as well.

  71. Tara

    For the past 15 or so years I have been living with an unknown condition that has caused me to swell. For the most part the swelling has been confined to the feet, hands, knee’s etc. however I have had other issues that I have suspected are related. It began when I starting taking the birth control pill. I knew it was an allergy but I didn’t know to what. My doctor told me I have a skin sensitivity and told me to take an antihistamine. It wasn’t until I read an article today about a girl named Johanna Watkins, she was struggling with Mast Cell Activation Syndrome. I realized this could be what I am suffering from but to a lessor degree. Triggers I have noticed are exercise, friction on the skin, medication, extreme temperatures , physical and emotional distress and foods that are red in colour. I swell during specific times of the month, during ovulation or period and also when I am sick. I am unable to tell if the swelling is a result of my immune system being weaker than normal or if the sickness is from what is causing the swelling. After reading this article I will be looking into foods and drinks that are high in antihistamines and I will be going to my doctor so that I can get a proper diagnosis. This article was a great source of information, thank you.

  72. Mrs. Bishop

    This has been quite an active thread and for many years!

    I have MCAS. I spent an entire year going into anaphylaxis multiple times per week before I realized it was not psychological, not “vocal cord dysfunction”, not reflux. I have intestinal angioedema and my particular manifestation of MCAS has two ways it presents: intestinal angioedema which progresses to whole body anaphylaxis (can be from a food trigger but as likely from stress or hormone) and, estrogen-triggered as well. This means every ovulation, and, at the start of every menses, I degranulate.

    My plasma histamine was normal but my 24hr urine nmethylhistamine was over 300. My prostaglandin d2 was 1,547 (range 0-280, I believe). In other words, in MCAS, we see that these sub-mediators of inflammation can wreak havoc and therefore multiple drugs are sometimes needed for control. I want to say this: Diet schmiet. I eat strictly low histamine. I can go into angioedema from a sip of water if the stars are aligned. This is because we all must face that when mast cells behave badly, it takes an external mediator on our behalf (or even a series of them). Don’t blame yourself or the foods if you’re battling MCAS, it is bigger than you, by far.

    At present my drug regimen is being increased. I take H1 (Xyzal aka levocitirizine) 10mg BID and H2 (Zantac – I have found 75mg four times daily is better than 150 BID), Benadryl, Klonipin (benzodiazapines work wonders on MCAS peeps who have GI issues, there is a benzo receptor on the mast cell that helps prevent degranulation), two different PPIs – because it’s important to note that histamine increases gastrin production, causing GERD and increasing our risk for peptic ulcer, esophageal erosion etc,…

    Plus nasal and oral inhaled antihistamines and mast cell stabilizers (simbicort, Flonase, Azelastine, Atrovent)…

    And am now transitioning off high dose steroids (the only lifesaver for my level of angioedema/anaphylaxis til insurance clears me for the Xolair) to Cromolyn Sodium oral and Xolair… With the possibility of adding immunosuppressive drugs to replace steroids.

    I say Diet Schmeit because I eat like 12 foods, and with such care you would not believe. Mast cells must be beaten down with heavy sticks. Diet is supplemental to the medication when you become life threatening like this. I have nine EpiPens stationed in my house and bells in every room in case I can’t call for help. Don’t take it upon yourself to treat with diet and supplements (fyi probiotics cause me anaphylaxis – NO MOLD/CULTURED FOODS ALLOWED on my end). Find a doc. Get urine done and sent to Mayo – it takes weeks. Do your urine during a nice big outbreak, let ’em see it. The C-Kit mutation test DOES NOT have to be done via bone marrow now, mine was plasma. But it seems everyone recommends getting the endoscopy stains for CD25/CD117 now with the staining for #s of mast cells per field because for folks like me, knowing how badly the disease is attacking that tissue is vital to, well, deciding if you wanna keep your colon or not.

    I recommend Dr. Theodore Lee in GA. He can be found at Peachtree Allergy and Asthma, with four locations.

    And please read Dr. Afrin’s new book, Never Bet Against Occam. It’s terrific.

    Best of luck to all sufferers, may we see better days.
    Michelle

  73. Mrs. Bishop

    Now I’ve concerned myself that I’ve given carte blanche for MCAS sufferers to eat anything they want and so I wanted to insert this caveat:

    NEVER PURPOSELY TRIGGER YOURSELF.

    I eat low histamine like the rest of ’em. It’s my hope the Cromolyn oral and Xolair combo will allow me greater flexibility but if not, then I’ll never see another bite of cheese, or a peanut (aflatoxin from peanut mold is a huge degranulator) or mushroom, or wine, or a lectin in a bean or legume, or a whole grain (anything scratchy or irritating causes angioedema for me), or any fruit (fruits are bad for mold), especially pineapple (a natural degranulator) or papaya or avocado. Or nightshades, because they’re bad for autoimmune folks. Or seeds or nuts. Or seed based spices like cumin. Or “red spices” that cause vasodilation like pakrika and chili.

    Now you see. I eat nothing, friends. And still, anaphylaxis. My post was intended to show that you will be a salmon upstream if you do not go and get care.

    There is a set of docs at Vanderbilt btw – Dworski and Farhenholz – that do mast cell too. I can’t speak for them, I see Dr. Lee.

    And I wanted to add this – I have POTS. It is dysautonomia but it is not a primary dysautonomic disease, mine is secondary to MCAS. When/if you read Afrin’s new book, and you find yourself described on page after page like I did, you’ll see that if you have MCAS (I’m 41, I’ve always had it), you have other “stuff”. I have interstitial cystitis, diagnosed age 3. It’s honestly just mast cell degranulation in the bladder. POTS is really being caused by our inability to control fluid volume during changes in vasodilation from MCAS. Especially in people like me with high prostaglandins – which affect sodium and water retention.

    I am a certified nutritionist with a specialty in orthomolecular nutrition. I know diet, I know food, I know nutrition, and I know supplementation. MCAS trumps me. I’m okay with that. I know when to bow to someone’s Kung Fu.

    Don’t let yourself get to the anaphylaxis point before your ah-ha moment.
    Best wishes again –
    Michelle

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