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Celiac Disease and Multiple Food Intolerances

There are many of us with celiac disease who develop additional food intolerances after going gluten free.  Despite maintaining control of my celiac symptoms by being strictly gluten free, I have become intolerant to soy (2011), sulfites (2012), and too much dairy (late 2012-early 2013).  My allergy skin prick tests for soy and milk were negative, which shows that my reactions are not IgE mediated, and, thus, not “typical” food allergies in which there would be a concern about anaphylaxis. I have no knowledge of getting sick from soy, dairy, or sulfites prior to my celiac diagnosis in 2010, however, I may not have realized that I was reacting to these foods because I felt so cruddy from chronic gluten ingestion.

I have scoured the medical literature and spoken with as many other MDs as I can, and I have found no research or publications that show a link between celiac disease and other food intolerances.  There was a nice Italian study published last fall which showed that patients with “wheat sensitive” irritable bowel syndrome (IBS) do have a high incidence of food intolerances, and this led me to the conclusion that many of us with Celiac Disease may also have IBS.  Please see my post from earlier this year for additional information.  Likewise, last month in The American Journal of Gastroenterology, there is a Swedish study (see references) in which the authors describe the multiple food intolerances seen in patients with IBS.  The most common culprits for gastrointestinal symptoms in their sample of IBS patients included dairy (49%), beans/legumes (36%), wine/beer (31%), apples (28%), flour (24%), plum (23%), and pork (21%).  They reiterate that all of the following foods can precipate digestive symptoms in IBS patients: dairy, foods which are high in FODMAPS (fermentable oligo-, di-, monosaccharides, and polyols), high fat and spicy foods, foods with high levels of biogenic amines, i.e. histamine (such as soy), lectins (present in beans), and preservatives, such as benzoic acid and sulfites.

Although I do have “IBS” type symptoms after ingesting soy and sulfites, as well as large amounts of dairy, most of my symptoms of food intolerances are in other parts of my body.  When I eat soy I develop headaches, nausea, fatigue, flushing, and joint pains.  Every time I have developed this constellation of symptoms, I have been able to trace them to accidental soy exposure.  With sulfites I develop shortness of breath, wheezing, and flushing right away, followed by headaches, fatigue, joint pains, numbness, “brain fog,” and I overall feel lousy. With suflites I feel very similar to how I feel after being glutened, except when I get glutened I do not have the wheezing or shortness of breath occur.  You can read more about my sulfite issues in my previous post.

So, yes, while I believe that many of us with Celiac Disease have IBS, and that our intermittent digestive symptoms can be attributed to IBS, the real questions are why do so many of us have IBS (leading to additional food intolerances) and what is the real cause for our IBS symptoms?

Through reading, doing online research, and discussions with others who I have met through social networking, I think that the answer is histamine.  I believe that some of us with Celiac Disease are experiencing a histamine overload which is waging war on our bodies.

Histamine is a chemical produced by two types of cells in our bodies: basophils (a type of white blood cell) and mast cells. It is involved in the immune response and is an inflammatory agent.  Most of us are familiar with histamine being overproduced in hayfever and other seasonal allergies, and many of us have to take antihistamines, such as Claritin and Zrytec, to decrease allergic symptoms.

There are many foods which are high in histamine and/or cause histamine to be released. In most cases, the excess histamine produced after eating these foods is either stored or inactivated by the body. However, if one is lacking the enzymes that are responsible for the breakdown of histamine, symptoms can occur.  Also, if one has overly active mast cells, too much histamine can be produced, which overwhelms the body.  This is called mast cell activation syndrome (MCAS), and I plan on discussing this topic in my posts in the upcoming months. This is a very newly recognized disorder, and most of the journal articles about MCAS have been published in the last 24 months.  It did not exist when I was medical school, so few doctors know about it. Two great resources for mast cell disorders who I have met online who have been very helpful include Yasmina, The Low Histamine Chef, and Dr. Hornet Bupp on Twitter.

I will leave you with a list of histamine rich foods to ponder.  I found the list interesting, as I have had aversions to many of these foods for as long as I can remember, including pickles, sauerkraut, greek yogurt, sardines, mayo and sour cream. I have also avoided all condiments since I was a young child…

Histamine-Rich Foods (including fermented foods):

  • Alcoholic beverages, especially beer and wine.
  • Anchovies
  • Avocados
  • Cheeses, especially aged or fermented cheese, such as parmesan, blue and Roquefort.
  • Cider and home-made root beer.
  • Dried fruits such as apricots, dates, prunes, figs and raisins (you may be able to eat these fruits – without reaction – if the fruit is thoroughly washed).
  • Eggplant
  • Fermented foods, such as pickled or smoked meats, sauerkraut, etc.
  • Mackerel
  • Mushrooms
  • Processed meats – sausage, hot dogs, salami, etc.
  • Sardines
  • Smoked fish – herring, sardines, etc.
  • Sour cream, sour milk, buttermilk, yogurt – especially if not fresh.
  • Soured breads, such as pumpernickel, coffee cakes and other foods made with large amounts of yeast.
  • Soy and soy sauce
  • Spinach, tomatoes
  • Vinegar or vinegar-containing foods, such as mayonnaise, salad dressing, ketchup, chili sauce, pickles, pickled beets, relishes, olives.
  • Yogurt

Histamine-Releasing Foods:

  • Alcohol
  • Bananas
  • Chocolate
  • Eggs
  • Fish
  • Milk
  • Papayas
  • Pineapple
  • Shellfish
  • Strawberries
  • Tomatoes

Lastly, here is a lovely diagram of mast cells which I am saving here so that I can find it for future posts on mast cell disorders! Image is from Role of mast cells in allergic and non-allergic immune responses: comparison of human and murine data. Stephan C. Bischoff. Nature Reviews Immunology 7, 93-104, February 2007).

mast cell #2

References

1. Bohn, L., et al. Self-reported food-related gastrointestinal symptoms in IBS are common and associated with more severe symptoms and reduced quality of life.  The American Journal of Gastroenterology. May 2013. 108: 634-641.

2. Foods that contain histamine or cause the body to release histamine, including fermented foods. List from Michigan Allergy, Sinus, and Asthma specialists. http://www.michiganallergy.com/food_and_histamine.shtml.

60 thoughts on “Celiac Disease and Multiple Food Intolerances

  1. Gill

    Thank you so much for your informative posts. You are helping me, and many others I’m sure, find answers and understanding to the health issues that have compromised our quality of life and baffled our doctors. My documented history spans 4 decades and I have seen dozens and dozens of doctors, been treated for anaphylaxis x 3, have multiple food allergies and sensitivities, and developed osteoporosis along the way too, despite an incredibly healthy life-style. Discovering 2 months ago that I had DH was a life changer for me. I now have hope and a slowly improving quality of life, but like you I am not without other puzzling symptoms. My own GP/PCP who is close to retirement, and who is nothing but supportive and understanding, said to me on my last visit “I’ve only seen one case of celiac disease in all my time in practice” . Not so, as we know, he will have seen many who were treated for a symptom, not the cause of the symptom/s.

    I smile when I see your new posts … I know I am going to learn more about the mysterious workings of our incredible bodies. Imagine anything else that would put up with being poisoned for all those years and still keep on functioning!

    Thank you Jess …

    1. Jess Post author

      Hi Gill,
      Thanks so much. I agree with you that our bodies truly are amazing.
      Although there has been increasing information about the role of the “leaky gut” in both Celiac Disease and I.B.S. (and multiple food intolerances), not as much emphasis has been given to the possibility that an histamine overload and/or problem with mast cells may be one of the culprits. It has really been through trial and error with my diet, as well as via some chance internet conversations, that the pieces of my puzzle have been falling into place. Perhaps for some of us histamine is the root cause of “leaky gut” symptoms while for others there is another etiology….some are saying that hormones as likely involved as well!
      Jess

  2. Molly (Sprue Story)

    I’ve been noticing reactions to FODMAPs more and more recently (nearly killed myself with an apple, and cabbage? Forget about it). It’s a bummer, but I have my fingers crossed it might get better as the rest of me heals. We shall see! Nice thorough post as always. :)

    1. Jess Post author

      Hi Molly,
      Keep us updated on how the FODMAPs diet goes. I will cross my fingers for you that you heal up quicker than most of the rest of us did!! It is absolutely outrageous what gluten can do to our bodies, and the more that I read and learn, the more I can see how wrong I had it at the beginning of my journey.
      I am slowing down my posting for the summer because we’ll be on a long (much needed) vacation but I’ll be catching up on reading others’ blogs (like yours) so I hope to see you over on “Sprue Story.”
      Hope you are having a happy summer!
      Jess

      1. Jing

        Thank you so much for the info. I am self diagnosed celiac a month ago (been to 8 drs) blood work, comprehensive metabolic, urine and stool exam and abdominal xray were normal. My older sis was officially diagnosed after almost 2 years of going to the doctor and multiple tests, she lives in Germany. We grew up in Philippines. 4 years ago I came here in america. The drastic change of my diet made my celiac full blown I guess. By the way I Just found out today that I am FRUCTOSE /FRUCTAN SENSITIVE ( SPECIFICALLY: APPLES & ASPARAGUS) after gluten free diet. I noticed lately that I have this regurgitation of food at the base of my neck (right side) that, it will produced a pressure like sensation and back pain at the level of medial border of the right scapula. I was able to eat them before. Also fish affects my stomach a feeling of twitching. Just want to share my experience. I never thought this celiac as complicated as this one.

        1. Jess Post author

          Hi Jing,
          I am sorry that it took you so long to be diagnosed. At some of the conferences I’ve been to recently, the celiac experts are trying to get the word out that many of us may experience digestive symptoms from FODMAPs (of which fructans are one). I agree that it can be really challenging to get the hang of the GF diet and then discover that other foods need to be restricted as well. I hope that you are able to tolerate many other fruits and vegetables.
          Thanks for sharing your experience too! I appreciate whenever readers reach out and make comments that can then help other people.
          All the best!
          Jess

        2. JBennettKernan

          My official diagnosis of Celiac Disease came after many expensive tests and all came down to one thing…HIVES. Celiac suffers get hives when exposed to large amounts of gluten. So keep you eyes open for the hive effect.

          1. Jess Post author

            Thanks so much for sharing your experience about the link between hives and celiac. I think in many cases that the hives are as a result of overactive mast cells, but it does all seem to be related.
            Jess

  3. deni

    I’ve been diagnosed with celiac for over twenty years now. (Where has the time gone????) And I have become more an more sensitive to foods. I have a pretty limited diet of what I can eat and still be ok. Early on, I started having anaphylactic responses to what seemed to be gluten. Would get seizure-like muscle spasms as well. I’m finding out it is most likely a histamine related thing. This past year found me with daily (hourly – continually) hives and swellings and angioedema (sp?) that sent me scurrying to an allergist/immunologist. I was placed on zyrtec at a tiny, tiny dose (my med doses are often low) and it has helped. I had gone on a low histamine diet and had several docs tell me it wouldn’t help. I’m finding it does. Added my apple-cider vinegar back to my diet and *bam* – it was all back for three days. I don’t know if the histamine thing is connected or not – but my cardio says that the typical american diet is so high in histamines that we are setting ourselves up for problems. Was glad to see this introduced in your blog. Helps me not to feel like a completely crazy lady that the docs call a “medical impossibility”!

    1. Jess Post author

      Hi Deni,
      I think we are just scratching the surface with our understanding of the effects of histamine on our bodies. From the little that I have read and heard, there is some sort of autoimmune-gluten-hormonal problem with histamine/mast cell activation which we are experiencing. I think my first indication was that all of my seasonal allergies disappeared when I first went GF in 2010 after my diagnosis. This was prior to all of my food intolerances emerging.
      Are you able to take regular Zyrtec, or do you have it compounded? I take 10mg/day and I have to have it compounded because I react to the sulfites which are in most of the fillers.
      Like you, I do sometimes feel like a medical impossibility, but it helps to know that we are not alone! I cringe when I think back to how many patients with undiagnosed gluten related illnesses who I probably encountered when I was in my training.
      Anyway, thank you for writing and best wishes!
      Jess

  4. Michele

    Much like Deni, I too suffer with hives, itching, bloating and for me, depression. I’ve had CD for 11 years and was recently diagnosed with 30+ foods I’m allergic to but the hives/rash/itching still haven’t gone away. They thought that would be the answer.. Anyway, I had a couple of glasses of wine the other night and the next am, I was lit up like a Christmas tree and itched from top to bottom worse than ever. That’s when it occurred to me it might be sulfites. I am allergic to Sulfa meds too, which I suspect is related. I’m happy to have found this post, I am now wondering if there is a sulfite allergy test? I have an appt with an immunologist in two weeks, I’m hoping that I’m right with this diagnosis as it may save me some money as we are self employed and all these tests are very costly. I went to the Jefferson Hospital Celiac Center and all they did was run blood tests to check my vitamin levels. They couldn’t grasp the idea that the hives were related to having Celiac. They said I had to go to a dermatologist to get my rash and hives biopsied.

    Thanks for all the information! I hope you are having a wonderful summer.
    Michele

    1. Jess Post author

      Hi Michele,
      Thank you for stopping by and sharing your story.
      As far as I know, there is not a test for a sulfite allergy, it’s one of those things which we figure out on our own by eating/drinking sulfites and tracking reactions. Have you been keeping a food journal? Doing so helped me out a ton last summer when I was trying to figure out which foods and drinks I was reacting to. I did see an allergist who performed skin prick tests for a ton of foods last year, all of which were negative.
      Sulfites do trigger a histamine release in those with mast cell problems. My immunologist did baseline tests for mast cell activation disorder on me (hsitamine, tryptase, and urine methyhistamine and prostaglandin D2) and I will be traveling to a mast cell clinic later this year for the rest of my evaluation and work-up. I do plan on writing about all of this in much more detail once I have the formal evaluation, but in the meantime there is some great information about mast cell activation disorders on the Mastocytosis Society of Canada’s page.
      Good luck with everything. Also, feel free to join the “sulfitesnomore” group on Facebook.
      Jess

  5. Jason L

    I came across this site searching for histamine and celiac. My father has celiacs disease, but its onset (or discovery) was rather unusual.

    He and I both of very high levels of lipoprotein-A. The only known way to handle it is with Niacin. My father had been taking the non-flushing version for a year or so when I came across an article that you *must* take the flushing version or it will not have any effect on lp-A.

    He immediately went back to his non-flushing dose the next day, which gave him and extreme flush and caused him to break out in hives. Niacin actually releases stored histamine into the bloodstream and temporarily enlarges capillaries causing the flush reaction.

    After this incident, he could not figure out what was causing the hives and skin rashes. He did allergy tests pads, etc. Eventually, it was confirmed with what he tells me is the “gold standard” for celiac – a biopsy of the small intestine.

    He *never* showed any skin issues prior to the extreme niacin flush; afterwards, he would break out with skin lesions and rashes after eating any gluten at all. It seems to me that this is far too extreme to be coincidental. Something in the large histamine release from taking Niacin triggered a tipping point in his body.

    Are there any mechanisms that could cause this?

    1. Jess Post author

      Hi Jason,
      Your dad’s pathway to Celiac Disease diagnosis is very fascinating. I wish that I would answer your question for you, but I do not know he answer.
      Many of us with Celiac Disease have an exacerbation of symptoms after accidentally ingesting gluten after being GF. In my case, I now get neurologic symptoms after getting any cross contamination. It is as if gluten triggers not only Celiac antibodies, but other autoantibodies which then effect multiple systems of our bodies. Perhaps your father’s histamine rush is from the immune cascade triggered by gluten.
      There has been increasing information about a genetic defect called the MTHFR mutation in which DNA methylation is impaired. It can cause elevated levels of homocysteine and plays a role in folate and B12 metabolism. It runs in families and is starting to be linked with autoimmune diseases and autism in people who are carriers of the mutation (it was previously believed that the only people effected were those who had 2 copies of the gene). I have seen it discussed on some of the mast cell activation, sulfate, and histamine intolerance forums, so it is a topic which I plan on learning and reading more about more about. Perhaps this could be your dad’s missing link?
      Please keep me updated if you find any answers, as chances are, there are others who have had similar experiences as your dad. Good luck to both of you!
      Jess

      1. Jason L

        Hi Jess,

        Interesting information you posted! Coincidentally, I had the 23andme genetic testing done a few years ago. I fed the data into geneticgenie.com and sure enough, I have a homozygous mutation of C677T (which means my Dad has at least a heterozygous mutation).

        I’ve done quite a bit of reading on mthfr.net. My Dad started yesterday taking some of the supplements suggest on that site (specifically, 5-MTHF). We’ll see what this does.

        1. Jess Post author

          Hi Jason,
          Thanks for following up. Please write and let me know how your dad does with the supplements which were recommended for the mthfr mutation (I hope for his sake that his symptoms improve, and perhaps someone else will read this and be helped!)
          Jess

      2. DianaThompson1963

        ak, I have 2 copies of DQ2 and 2 copies of DQ8, I decided my celiac was no mistake. I am first to be diaganosed in the family. I wonder what this means! Maybe I should be going to that conference! You mean these reactions may not be all in my head? I think they are totally weird.

        1. Jess Post author

          Hi Diana,
          I have a feeling that the reactions are not in your head at all. The first research articles about mast cells and food reactions were just published a few years ago, so we should hopefully have a lot more information in the future. I believe that the longer we go before being diagnosed and going GF, the worse off we are, and the more likely we are to develop problems with mast cell activation.
          Also, please let me know if you go to the conference. I would love to connect in person!
          Jess

  6. jane carnell

    Hi. I’m new to the notion of gluten– I have had multiple food ‘allergies’ as determined by RAST testing for 20 years. But all the fermented food and the brain fog reaction reminds me of ‘yeast’ or candida albicans infestiations. you can check it out. Dr William Crook, THE YEAST CONNECTION, a classic written by an MD.

    1. Jess Post author

      Hi Jane,
      Thank you for providing the information about yeast and Dr. Crooks’ book. I know that candidal overgrowth is not a problem for me but I am sure that there are many others who will be helped by this information. I will definitely check out the book and report back.
      Jess

  7. Olivia

    Hi,

    I just discovered your blog today and am reading backwards and very much enjoying it. You present a lot of good info in an easy to read and in a relatable manner.

    I found this post particularly interesting. A small bit of background – I was diagnosed with celiac over ten years ago, after many years of being undiagnosed. Right around my eight year mark of being gluten free, I moved abroad and unfortunately ended up getting repeatedly glutened while I figured out how to live GF over here (total mess). Because of the nature of my symptoms, it took me almost a year to figure out what was happening.

    I say this all to say: one of my “weird” symptoms during both of my long term glutenings, and that persists for years after going GF, is that I get burning and itching in my legs when I walk quickly. The only thing that helps is taking an antihistamine. I got that tip from a running or fitness magazine, so perhaps the burning is not that unusual, but for me it eventually goes away after several years GF (well, it’s still going now, I hope it goes away again this time). This post made me think of that right away.

    Thank you for writing this great blog!

    1. Jess Post author

      Hi Olivia,
      Thanks for much for taking the time to introduce yourself. I started this blog about a year ago and sometimes I question whether or not anyone is reading or not as most of my comments are spam and/or people in the Celiac world trying to sell me products or try to get me to advertise for them. It can be very disheartening.
      I was just finally diagnosed with mast cell activation this past summer and it really helped me to realize that many of my ongoing symptoms were not related to celiac disease at all. I really do think that a lot of us have mast cell issues in addition to gluten issues and I am planning on writing more soon about this.
      Are you a runner? I am a runner and I love to connect to other GF athletes to get tips and advice.
      Jess

      1. Olivia

        Hi Jess, I’m sorry I never replied, I forgot about my comment here until I stumbled upon it while researching histamine intolerance due to my own increasing symptoms – it startled me to see my own comment! I guess it takes a while for the pieces to click together :)

        I don’t run much but I am active (hiking, biking, climbing) and would love to chat celiac and athletics. You can email me if you’d like! olivia144@gmail.com

        Thanks again for your great blog!

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  9. Tricia

    Hi,

    I am very thankful for this blog post and very intrigued about where I should go next with my treatment options. In the last month, my celiac panel came back highly positive (TTG > 100 and DGP 92) and small bowel biopsy came back positive for celiac. After undergoing that testing my immunologist/allergist decided to do a skin allergy test because the initial thinking was that my symptoms of fatigue and recurrent canker sores were related to food allergies. When she did the test, I tested positive to almost 20 foods and my doctor’s response was that she was “flabbergasted.” Ironically, after reading your post,I tested positive for every food listed above under histamine releasing foods in addition to a few others (except papaya but that is because I wasn’t tested for papaya). To make matters more complicated, I have a homozygous mutation of C677T, low vitamin B12 levels, hypothyroidism and a history of excessive scar tissue development after knee surgeries leading to multiple complications. I am 30 years old, a RN, mom to 2 young boys and I am desperate to get this complicated medical puzzle put together so that I can be as healthy as possible for my family. What tests need to be done to determine if this is a problem related to mast cells and the overproduction of histamine? I have a followup appointment in January with the immunologist/allergist who said that she was also going to be doing some research but any input that you have would be greatly appreciated! Thanks, Tricia

    1. Jess Post author

      Hi Tricia,
      I am sorry to hear about all that you are going through with your health. Mast cell activation syndrome is such a recently recognized disorder that a lot of doctors do not know that it exists. I myself had not heard of it until one year ago. I have been meaning to write a comprehensive post all about it (symptoms, how it’s diagnosed, treatment, etc) on here but life keeps on getting in the way.
      The testing consists of getting a baseline serum histamine and tryptase level and then a repeat histamine and tryptase level after a flare. If you are on the MCAS spectrum, although the baseline levels may be normal, there should be an increase when you are symptomatic. A 24 hour urine collection is also sent for prostaglandins and methylhistamine. If you’d like, I have a bunch of articles that I can send you PDFs of that contain all of the particulars. My email is thepatientceliac@gmail.com.
      Jess

  10. Kelly Shaffer

    Hi. I’ve been diagnosis with celiac for 7 years. When going gf I was fine for about 6 mos. then the diarrhea vomiting stomach pains started again. The stomach pains is not the same stomach pains as gf. But still painfully and the nausea. I’ve been sick my whole life. No one believed me. Until dr Chang and that’s when I was 30. But that was after I dislocated my jaw vomiting from the celiac. But since being diagnosed I’ve had 3 colon scopes 2 endo scopes. The last scopes as recent as 12/4/13. And they came back as clean. I did have an allergy test done which said no food allergy however I did get a slight raise/bump on beef. Not enough to consider allergic. So me and my husband are thinking its more food intolance. Do you think we are on the right track here. I can’t and I mean I can’t live this way anymore. It’s tearing me up. I now have anal fissure cause of the diarrhea. I’m so fatigue more than half the time I can’t get out if the bed. I sleep all weekend. Come home from work and go straight to bed most of the time. My b12 is low on rx to make that higher not really helping. I take 24-3000 calcium. I have osteoporosis. I take to vit and bunch of regular supplements. Plus severe migraines. Tendinitis in feet arms legs I’ve also keep getting bursitis in the hip.
    Do you think something else could be going on. Are me and my husband in the right track by looking for other food intolance. Or should I we do something else. Should we look into this mast cell disorder??

    1. Jess Post author

      Hi Kelly,
      I am so sorry to hear that you have been sick for so long.
      Food intolerances are really hard to figure out since there is not a “test” for them per se, so a lot of us are stuck figuring them out on our own. In my case I had to keep a really detailed food journal of everything that I ate and the symptoms that I had, and it took weeks for the pieces of the puzzle to come together.
      Right now mast cell activation syndrome (MCAS) is really under-diagnosed because most doctors do not know to look for it in patients. From what I have read, and others who I have interacted with who have MCAS, it seems to affect mainly women who are in their mid-twenties to mid-fifties (makes me think it’s somehow due to hormones). It can affect almost any system of the body, so in some it can cause chronic hives, in some asthma-type symptoms, in some neurologic (migraines and neuropathies), in some digestive/irritable bowel syndromes, etc.
      I had to approach my own allergist armed with articles and a list of my symptoms in order to convince him to test me for it (I did end up having it). Right now my biggest triggers are any foods or drinks with sulfites. Sulfites trigger mast cells to release histamine, and too much histamine is what causes symptoms in those of us with MCAS. I get IBS, wheezing, palpitations, etc. It sounds like it may be worthwhile for you to get tested if you are in a situation that you can from an insurance-standpoint.
      If you’re unable to get tested, one option to try to figure things out may be to do an elimination diet and then slowly add foods back in to see what triggers your symptoms. There are multiple sources for elimination diets on the internet, most require you to remove all processed foods and then many of the big “trigger” foods such as gluten, dairy, soy, eggs, etc, and then slowly add foods back one at a time. My safe foods are always lettuce, chicken, and sweet potatoes. If you don’t feel better on an elimination diet, then chances are your symptoms are not food related.
      I hope that this helps a little. I have learned that patients usually have a gut instinct of what is wrong with their bodies, so I urge you to trust your instincts!
      Jess

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  12. Laura

    I have studied a lot of the science literature about what I call “delayed food allergies” and I would be happy to share with you what I’ve found.
    There was a study by Carrocio et al, maybe that’s the Italian study you were referring to.
    They said there seem to be 2 different categories among people with “non-celiac gluten sensitivity”. First, there are people who seem to have a preliminary stage of celiac disease. And then, there are people who have multiple delayed food allergies and seem to have basically an allergic mechanism. They tend to have other kinds of allergy problems too, such as allergic rhinitis.
    I think this also applies to the “other food intolerances” in celiac disease – if you are unlucky enough to have autoimmune tendencies AND tendencies to allergy, you would get these “other food intolerances” with the celiac disease.
    I probably have celiac disease. I have a huge number of these delayed food allergies. There isn’t much left that I’m not allergic to! I have horrible problems with inhalant allergies too.
    I do NOT think that for me, it’s a matter of histamine intolerance. I develop new delayed food allergies to any food if I eat it often. Following a rotation diet helps prevent new allergies from appearing. When I develop these delayed food allergies, I get sick from a tiny amount of the food! A fraction of a milligram of food protein can make me sick. It doesn’t matter if it’s a high-histamine food or not.
    I can believe I have extra mast cells in my gut. I think extra mast cells appear whenever there’s chronic inflammation.
    It’s possible to have localized allergies, so negative tests for IgE-mediated food allergy do not imply that these food reactions are not IgE-mediated. There’s a new clinical entity called “local allergic rhinitis” which is fairly well established, there’s a CME course online about it. Over and over, I’ve encountered speculation in research articles that “non-IgE mediated food allergy” may involve localized IgE-mediated allergy in the GI tract. There does not seem to be good evidence against this, and there’s a lot of suggestive evidence in favor of this.
    I’ve never gotten skin tests for food allergy, but I’ve gotten blood tests and they were mostly negative.
    I found that oral cromolyn, Singulair and perhaps H1 antihistamines make my food reactions much more mild. So they probably do involve mast cells.
    I’m experimenting to see if I can desensitize myself to the delayed food allergies, with the help of the allergy meds. I wrote an online post about this and I would love to share info with knowledgeable people.
    I have a personal wikipedia page with lots of references on this subject. It’s in an unfinished state so I don’t want to make it public. But if you are interested in seeing this info on this subject, email me including “glimful” somewhere in the email.

    1. Jess Post author

      Hi Laura,
      Thank you so much for sharing the gift of your information and experience with all who may be reading. I am assuming that you have a medical background too, based on your writing.
      Yes, the article that I discussed was the one about “wheat sensitive” IBS, and I’ve often felt that I fell in to the 2nd group too (having both celiac disease and then IBS triggered my multiple foods). I am not sure if you came across it, but just 2 weeks ago I posted about my experience with being diagnosed with mast cell activation syndrome. Antihistamines, oral cromolyn, and quercitin have made a huge difference in my quality of life and I’ve been able to reintroduce many foods too over the last few months.
      Eosinophilic esophagitis is the IgE mediated gut allergy that came to my mind when you discussed food intolerances in your post, and as this often goes hand in hand with celiac, it wouldn’t be surprising if mast cell invasion of the intestines occurs as well (at least in unlucky people like us).
      I would write more but I am extraordinarily tired and am trying to fit all of my work for this web page into the last few minutes of the week. I look forward to checking out your blog post and I’ll be in touch via email in the upcoming weeks. Thank you Laura!
      Jess

      1. Laura

        Hi,
        I don’t have medical training, I’m just a very science-oriented person.
        Besides the references on the page I emailed to you, here are some other interesting papers:
        Response to intestinal provocation monitored by transabdominal ultrasound in patients with food hypersensitivity The food hypersensitive people with negative skin-prick tests tended to have a less intense response to the food compared to the ones with positive skin-prick tests.
        Around 2003-2005, I came across a paper on Medline giving percentages of patients with celiac disease who were sensitive to non-gluten foods, like citrus. I think it was in a gastroenterology journal. I haven’t been able to re-locate that paper, though.
        Indications of ‘atopic bowel’ in patients with self-reported food hypersensitivity
        Perhaps we can exchange PDF’s of papers when they aren’t available free online. I go to the Cornell library to download the full text of papers, but only now and then.
        My non-gluten food reactions are likely not a consequence of celiac disease. I started having weird food reactions when I was 20, the same time as I started having allergy symptoms from inhalants. I would get jittery/spacey/foggy after some foods. Some foods actually caused hunger pangs – and those foods turned out to be ones I had severe reactions to, after doing an elimination diet. Someone told me once the hunger pangs might indicate the food is irritating my stomach/intestines. But I only came down sick with what was probably celiac disease, when I was 43 – chronic foggy state, joint pain, tendonitis in my forearms, etc. Celiac disease can be asymptomatic, so it’s also possible that I had it for 23 years without knowing it.
        For me, my reactions to gluten grains after an elimination diet, were the same as my reactions to non-gluten foods like apples and citrus. So I think one’s felt reaction to gluten may be a separate process from the autoimmune process that’s triggered by gluten.
        Right after I quit gluten in 2003, my reactions to foods were much more severe than later. So celiac disease might have made those reactions a lot worse.
        Yes, I did read your blog on MCAS. I wonder whether the testing differentiates between MCAS and localized increased mast cell counts? Allergic mastocytic enterocolitis may involve either increased mast cells or mast cell instability. There’s a special stain for mast cells that isn’t usually used in small intestine biopsies.
        I’ve thought of using quercetin. I’m a bit worried about it because the amount of quercetin one takes to stabilize mast cells is much more than the amount one would get from foods. Has it been tested for safety with long-term consumption of those increased amounts? I’ve read that quercetin is a suspected carcinogen, but I didn’t find anything that looked like solid evidence for this.
        I have only been taking about 10 mg of the foods I’m allergic to, after taking allergy meds. I get foggy and tired even from those small amounts, but it’s not too bad. I’m taking a particular food only once every 4 days, because I’ve “rotated” my foods for years, and this has helped a lot to avoid developing new delayed food allergies. In the past, if I ate even a tiny amount of a food every day, I might develop an allergy to it. This happened with a ginkgo biloba supplement. So I think there might be something going on with my immune system, such that giving my body a break from a given food, avoids developing an allergy to it. Actually I started doing these desensitization experiments, after I developed MORE delayed food allergies, to food that I was eating almost every day. There are very few foods I’m not allergic to!
        If my desensitization experiments work, I would still be following the “rotation diet”, eating any given food or foods that cross-react with it, only once every 4 days.
        Sorry to hear about your fatigue. Do you think it’s related to food reactions? Have you tried an elimination diet followed by food challenges? This might help to discover specific foods that are a problem – however, after the elimination diet, one may become sensitive to even tiny amounts of the food. That’s what happens to me. I did get really sick from food challenges, stayed at home for a few days. So, at the cost of having a more restrictive diet, you might have less fatigue.
        I asked a gastroenterologist once whether I might have EE, but he said I didn’t have the symptoms. But maybe he was wrong and this is something I should explore.
        That article about mast cells in allergic and non-allergic responses looks interesting.
        There’s a non-IgE mechanism for allergies that involves mast cells: immunoglobulin free light chains. FLC’s may also play a part in allergic rhinitis.

      2. Laura

        ps Totally eliminating food allergens may actually interfere with one’s mechanism for developing oral tolerance. Recently there’s been success in oral immunotherapy for classical IgE-mediated food allergies. It involves eating tiny amounts of the food, and slowly increasing the amount. I’ve read things that suggest that tolerance for allergens may be increased when one is exposed to one allergen.
        Doing a hypoallergenic elimination diet appears to remove some kind of “masking” of delayed food allergies, so they are obvious when one does food challenges.
        However, eliminating those foods long-term may actually be harmful. I haven’t read the full text of that paper yet.

      3. Laura

        ps You mentioned in another post that you had trouble with pills made with corn starch, because of the sulfites in them.
        How do you know this is because of sulfites, not the corn protein? Do you eat corn?
        Corn has a reputation for being very allergenic. I get my meds from a compounding pharmacy as well, for similar reasons. I got very sick in bed for about 5 days after eating 1/16 of a corn kernel, after an elimination diet.

      4. Laura

        I can get oral cromolyn for much less from a compounding pharmacy btw. They charge me $120 for a month’s supply at the usual dose, 200 mg 4x/day. They give it to me in powder form and I dissolve it in hot water then drink it.
        I tried a double dose of loratadine. I read that loratadine is actually a weak antihistamine at the standard dose of 10 mg/day, and 20 mg/day is probably OK. They chose the 10 mg dose so they could market it as nonsedating. The double dose does seem to have a sedative effect, I’ll have to see if it will go away as my body becomes accustomed to it.

  13. Laura

    Jess,
    How long have you been gluten-free?
    I ask because there’s a process that people go through, that I’ve read about here and there.
    Someone quits gluten, they feel much better. Then a few months or a year later, other food reactions surface. they quit those other foods, and perhaps get rid of other chronic symptoms.
    Then a few years later, they quit other foods …
    It may go on until there’s very little left to eat! I quit gluten in 2003 and went through this process.
    It does seem that you’re an allergic person, you’ve had seasonal allergic rhinitis.
    Me too.
    And what I’m asking in my post on desensitization, is whether this process of quitting foods is destructive long-term. Perhaps people should not be quitting foods, other than gluten grains, because our mechanism for oral tolerance needs to be used. I read something, for example, about exposure to ovalbumin (an egg allergen) reducing the allergic reaction to other allergens.
    I read that people develop tolerance for inhaled allergens, because some of the allergens end up in the gut, and that triggers the oral tolerance mechanism.
    The paleo diet may be helping you because it excludes a lot of common allergens.
    But avoiding foods can be like going down the rabbit hole, long term.

    1. Jess Post author

      Hi Laura,
      Thanks so much for sharing all of your info and ideas. You have definitely researched this area more than most of us have, and your experience with eliminating and reintroducing foods is fascinating.
      To answer some of your questions, I have been GF for 4 years. I have ruled out having a corn intolerance because I can eat corn on the cob and fresh popped pop corn without developing any symptoms. At the height of my mast cell issues last year I was unable to tolerance cornstarch and some processed corn products, but I have slowly been able to add these foods back in (I can probably also stop getting the specially compounded Zyrtec too, but I’m a little chicken to go back to the OTC version).
      Right now I take Quercetin 500 mg 1x/day. I am unaware of any true link of the supplement with cancer and Dr. Theoharides at Tufts has done some great research of it’s usage with mast cell diseases. His website is http://www.mastcellmaster.com/publications.php. It is lacking in long term follow-up data, but it’s sadly the case with many medications and supplements that we trust (i.e. the general public just finding out this week that the doses of extra strength Tylenol are too high).
      I would love to share PDFs with you as well.
      Hope we can keep the interaction going, and thanks again for all of the information, as well as your email.
      Jess

      1. Laura

        I have ruled out having a corn intolerance because I can eat corn on the cob and fresh popped pop corn without developing any symptoms.
        There’s a difference between desensitization (temporary loss of responsiveness that’s maintained by exposure) and tolerance (permanent immunological nonresponsiveness). The 2011 article “Food Allergy” by Wang and Sampson has info on what’s known about how oral tolerance develops and oral immunotherapy for food allergy (I have the pdf of that and can send it to you if you like.) What elimination diets and food challenges do, is to discriminate between desensitization and tolerance. The hypoallergenic elimination diet excludes foods that are common allergens. What this does is to cause the body to stop making the cytokines etc. that suppress allergic reactions. So when one tries the foods again in the food challenges, the allergic reactions are more obvious.
        The reason for doing this is that when people have an allergy that their body is fighting by temporary desensitization, they can still have symptoms from the allergy – but vague enough so they aren’t associated with that food. Feeling grotty a lot of the time, a lot of fatigue etc.
        I used to eat bagels and cheese, and I never noticed anything particular happening. But after I went gluten-free, tiny amounts would make me sick.
        With gluten, if one happens to have an allergy that cross-reacts with other grains that don’t cause autoimmune damage, eating the other grains could prevent terrible reactions from trace wheat.
        Or even, being exposed to trace wheat periodically might be useful, as long as it doesn’t start up the autoimmune process again. A biopsy can tell if autoimmune damage is happening.

        1. Jess Post author

          Hi Laura,
          I have eaten corn for my entire life. I excluded all corn products for about 6 weeks when I did the elimination diet in 2012. I added corn on the cob and popcorn back in and had no symptoms, and I have continued to eat these foods without a problem.
          Is there some other test/process that you are alluding to for food intolerances?
          Jess

          1. Laura

            Is there some other test/process that you are alluding to, for food intolerances?
            No, just elimination diet/food challenges.
            The reason I wonder is that you mention having inhalant allergies, so you are an atopic person. Also that you have had IBS – more common in allergic people, and may involve gastrointestinal food allergies. Also that you have MCAS, which is perhaps caused by eating foods you’re having immune reactions to (at least, my delayed food allergies seem to start with mast cells).
            I did 3 main elimination diets. The first one, I got from a library book, at the suggestion of an allergist. I had no symptoms after food challenges. But the diet included gluten (!) since at that time celiac disease was thought to be rare.
            Second one was gluten free and eliminated enough of my food allergens so I did have reactions to food challenges. Very bad reactions. But I kept on eating fructose (made from corn) during the elimination diet because I had bad symptoms if I didn’t. I got sick from anything in the grass family, milk, apples and citrus.
            Third one in 2005, I did after slooooowwwwly quitting the fructose. I ate 1/16th of a kernel of corn after trying to eliminate all corn for a week. After that I spent 5 days in bed with a lot of back pain, slowly recovering.
            When I really stopped eating all corn, even traces in maltodextrins etc., a huge number of other delayed food allergies surfaced. Then, I did a 4th elimination diet, eliminating all the top 20 food allergens. All of which I’m allergic to :(
            So I know elimination diets have a lot of pitfalls – mostly, not eliminating everything you’re allergic to.
            Other than that – I’ve come across diagnostic methods that might work, in reading research articles. Abdominal ultrasound while doing a food challenge, atopy patch test, lymphocyte stimulation test. Just mentioning those FYI.

  14. Laura

    For many celiacs with these “other food intolerances”, a tiny amount of the food can cause a reaction. For me, half a milligram of the food protein is enough to do it. Also true for gluten grains.
    Does this suggest the felt reaction is (perhaps partially) IgE-mediated?
    I don’t think IgG-mediated allergies would be so sensitive. There are IgG receptors on the mast cells and it’s even possible to have IgG-mediated anaphylaxis – but it requires a much larger amount of the antigen than with IgE antibodies. The IgG immune complexes cause symptoms when they get into the bloodstream in large amounts, I think – but not in small amounts.
    Immunoglobulin free light chains might cause IgE-like sensitivity. In a thesis on FLC’s at http://dspace.library.uu.nl/bitstream/handle/1874/221010/groot-kormelink.pdf the author writes

    studies concerning the binding of FLCs are contradicting and indicate that
    binding affinities of FLCs can be either negligible, equal, or even exceed those of parent immunoglobulins

    He published a paper Immunobiology of antigen-specific immunoglobulin free light chains in chronic inflammatory diseases, I’ll try to get the full text of it.
    I started wondering whether my delayed food allergies were local IgE-mediated allergies, because I was sick for years without knowing why, and eventually I found out it was a local inhalant allergy. I was chronically exposed to inhalant allergens (mold and my dog living in my house), and my skin & blood tests for inhalants went negative over that time – which made it very difficult to figure it out – allergists were telling me I should investigate non-allergy causes! Eventually I figured it out by doing an elimination/challenge with dog allergen.
    I got most of my info on local allergies from the paper ‘Entopy’: local allergy paradigm..
    It seems that chronic exposure can cause local allergies, at least for inhalants. In local allergies, it seems the mucosa-associated lymphoid tissue (MALT in general, NALT in the nose) generates IgE, while in the classic picture of allergy, the lymph nodes generate IgE. (I’m not completely sure if this has been verified or is only suspected). I read that with chronic exposure to allergens, the mucosa-associated lymphoid tissue becomes more developed and more capable of generating allergies on its own.
    My allergic reactions also got worse with chronic exposure. A whiff of dog from a car 50 feet away, could make me sick for 5 days.
    This has gotten better with extreme measures for avoiding exposure to allergens. I don’t stay sick as long any more from an allergic reaction.
    I got allergy skin tests again recently – and I again have allergies in skin tests – but only new allergies! A few molds showed up that I hadn’t reacted to in the past.
    But going through this, made me wonder if my delayed food allergies might be local IgE-mediated allergies. Possibly there are changes in the GALT (gut-associated lymphoid tissue) with chronic exposure to large amounts of antigens, that make local allergies in the gut more likely. Do biopsies of celiacs show such changes?
    So what can one do about these delayed food allergies aka “other food intolerances”?
    We know what the consequences of totally avoiding the food are. One becomes hypersensitive. And perhaps, over 5-10 years or so, these delayed food allergies gradually disappear. At least that was what many people on the celiac mailing list said.
    For me, those delayed food allergies haven’t disappeared. They are still quite powerful even though I’ve been GF for almost 11 years now. I still get quite sick from a fraction of a milligram of protein, I still stay sick for about 4 days, I still get emotionally messed up during food reactions, unless protected by allergy medicines beforehand.
    It looks like my mucosal immune system is severely messed up!
    So I’m asking myself, is strict avoidance the best strategy?
    Oral immunotherapy has helped people with classical IgE-mediated food allergies a lot.
    And in the abstract of an article Food allergy: from the of loss of tolerance induced by exclusion diets to specific oral tolerance induction they write

    The prevalence of food allergy and anaphylaxis in children is reported to be increasing in recent years. Evidence suggests that exposure to large doses of antigen might produce a suppression of the specific IgE response, so that the continuous contact with high doses of antigens favours the maintenance of tolerance In the same way loss of contact with allergen in children with specific IgE reactivity may favour a loss of tolerance with development of systemic reactions, while a progressive new contact with allergen may favour a specific tolerance induction. We hypothesize that widespread and uncontrolled use of elimination diets for atopic dermatitis may have played a role in the increase of allergy and anaphylaxis.

    I don’t have the full text of that article either, another one I’m planning to download.
    I don’t think that for the delayed food allergies, being continuously exposed to large doses of antigen is a good idea. Actually, for me eating a food almost every day results in newdelayed food allergies developing!
    This has happened even if I eat a tiny amount every day.
    So, what I’m trying is eating a tiny amount of any given food that I’m allergic to, only once every 4 days. I eat something I’m allergic to, every day, after taking my allergy medications.
    Ideally, I would eat a small enough quantity so I don’t feel a reaction. I haven’t managed to do that yet – I’ve been doing this for a few weeks and I’ve been chronically somewhat hazy. I hope the hazy feeling will disappear in time and I can increase the amounts.
    I think suppressing mast cells/basophils with allergy medications may be a good idea, since this doesn’t sound like it would interfere with developing oral tolerance, from what I’ve read of the oral tolerance mechanisms.
    It’s all totally experimental – but then, as that article abstract illustrates, totally eliminating the non-gluten foods is also totally experimental – and may have bad consequences.
    I have delayed food allergies to all the top 20 food allergens and many other foods as well. My diet is very hypoallergenic, and I’m asking myself if a very hypoallergenic diet is a bad idea long-term.

  15. Laura

    Since cow’s milk cross-reacts with gluten, it also might make sense to take small amounts of milk now and then. Perhaps that would prevent one from having a severe reaction when accidentally glutened.
    I’ve heard that milk can cause intestinal damage, but much less so than gluten. So perhaps a good idea to restrict milk to very small amounts.

  16. Asarum Canade

    Hello, I was diagnosed with Celiac disease two years ago and I still feel awful some days while adhering to a strict gluten-free diet. After reading this post I am wondering if I should eliminate more foods although the list on this post makes me wonder what I CAN eat. Will you please make a post about foods you reccommend for Celiacs to eat? Thank you!

    1. Jess Post author

      Hi Asarum,
      I am glad that you wrote. It sounds like you have been doing your best being strictly GF.
      I just did a ton of research on the problem called non responsive celiac disease for a magazine article.
      The experts advise that the first step in celiac patients with continued symptoms is to meet with a celiac nutritionist to make sure that gluten is not somehow sneaking in (i.e. through a medication, supplement, etc). They then recommend that one have their case reviewed by a celiac GI doctor to make sure that there wasn’t an error in the initial celiac diagnosis. This is because a lot of other conditions can cause villous atrophy that looks like celiac disease on biopsy. Lastly, the recommend that patients with continued symptoms be evaluated for other conditions, such as small bowel bacterial overgrowth, irritable bowel syndrome, fructose intolerance, etc.
      When I wrote this blog post last year, I was not aware of this.
      That being said, all of my IBS symptoms have disappeared since I’ve went low histamine and soy sulfite free, so in my case I am pretty sure that those were the culprits. I can, unfortunately, not recommend the same for everyone because our bodies are so different. Keeping a detailed food journal can be very helpful to determine what foods you are reacting to.
      As an aside, one of the first line dietary treatments for non responsive celiacs is called the “Gluten Contamination Elimination Diet” which I wrote about last year. Here is the target="_blank">link.
      Jess

  17. Ross

    Hi Jess, for a moment I thought I could “ignore” (put aside) the idea or concern about allergies/histimines and just focus on my new eating style and exercise and all the fascinating discoveries researching. I don’t know if you noticed the recent publication in the New York Times about heart disease or cardio-vascular disease not being related to animal fat, but to LDL cholesterol and triglycerides created by simple carbohydrates… In any case, this was part of a cycle of some really fascinating reading for me. Over the past 4 weeks, I’ve removed from my diet simple carbs and most milk products with the exception of Natural Yogurt, since I found that it has greatly helped with pouchitis (J-Pouch) over the past 8 years… Last week I read that the risk of high animal protein diets is the increased risk of cancer connected with the amino acid methionine… It was written that eating skinless and boneless increases your methionine intake and subsequently your risk of various cancers. Chris Kresser’s and the Paleo dieters’ response is bone broths and gelatin, since the glycine in gelatin helps metabolize or remove the methionine from your body… Sounds great! And I wrote a long piece related to all of this and posted it on Facebook and my blog.

    As you may remember, my mother and her husband visited us for 5 days near Puerto Vallarta. The last complete day of their stay and the 3rd to last meal shared together, 3 of the 4 of us had a bad experience with the seafood. The strange thing is that for my mother and her husband, the reaction appeared 2 days later when they were home in New Jersey. My reaction began that same day, although, it showed with full-blown diarrhea 3 days later… In those days, I read about bone broths and gelatin and prepared a wonderful chicken soup with Jalapeño peppers (wonderful flavor imparted by the jalapeños); and probably a good solution to all the fluid loss. Those days I had also bought an electrolyte drink for cases of diarrhea and found that it was strangely too sweet. On the ingredient label was Dextrose. I imagined that dextrose was different from Glucose and researched Dextrose. It seems that the marketers of this electrolyte drink were concerned that if they put Glucose on the label, the diabetics and other health concerned people would not buy the product, since I learned that Dextrose is just another name for Glucose. But, what was interesting in the research is that someone wrote, “Glucose, the secondary energy source”, which peeked my interest. I wondered what was the primary energy source and learned that it is Fatty Acids (lipids/fat) and that carbohydrates are basically unnecessary for not extremely active athletes.

    Over the past month I had dropped between 15-18 pounds (5-7kgs) and was additionally thrilled reading about glucose as being a secondary energy need, next to protein, after fat… So, with the removal of simple carbs combined with moderate excercise, let the body metabolise the stored fat for energy and we are free. Throw in the stews and the soups with added bones and cartilage and eating and running will be so much easier (when I was a vegetarian in college 20+ years ago and running on the average of 4-5 miles six days per week, I injured my left leg (ileal-tibial band), basically ending my running days. Now with reading about gelatin and bone broths, I figured that had I known this in the early 90s, maybe I wouldn’t have injured myself. So, for a moment I said to myself, “it’s not too late at the age of 44; better late than never…” And then…

    So, as I told you, I had this wonderful chicken soup and planned preparing an “oxtail”, beef rib soup with the shank to hoof of a cow for increasing the gelatin/collagen content. The day of preparing my soup I suddenly found myself inflating. In fact, in less than 24 hours I increased my weight 6 pounds! I hadn’t slept the night before (believing it was from running 26 minutes at 7pm; now I realize that it may have not been from exercise) and strangely this night of the bone-gelatin broth, I had absolutely no tiredness. So, I spent a few hours investigating the possible connection between gelatin and insomnia and sudden weight gain.

    The same people who promote the preparation of bone broths and homemade gelatins for lowering cancer risks tell those Paleos who complain of impressive sudden water retention after consuming bone broth, tell them, “return to a high methionine diet, since you are clearly an ‘Undermethylater’” (someone who lacks sufficient Histaminase enzyme for metabolizing histamines…) Chris Kresser, who is a big promoter of Gelatin and Bone broths (eating from the head to the hoof of the animals) says that the problem with slowly cooked meats (and bone broths/stews), is that over time, the histamine levels of meat increases due to microbes. So, his response to those with allergic reactions to the slow cooked meat, bone broths and stews is, “return to steaks and eggs and boneless chicken breasts and increase your methionine levels for decreasing histimine levels”…

    So, that’s what I did. And now I say, “what’s the difference? I live my life worried and waiting for cancer on the horizon, since it is part of my destiny and life reality… Who knows? Maybe, like what seems good for others isn’t good for me (like high fiber diets), maybe increasing the cancer risk in others, actually decrease the cancer risk in me…”

    I’ve always cooked stews and light and typical bone broths… However, I generally don’t like the soups (chicken, beef/lamb, fish) the day after and usually froze the excess broth or used it in the preparation of rice or other dishes. What I think happened the prior two days began on the coast near Puerto Vallarta with 5 days straight of seafood (mainly red snapper and not so much shellfish, although the meal in question had red snapper stuffed with what I believe was undercooked shellfish–the octopus was gelatiny). So, I believe that my histimine level was already high and then 2 days of chicken soup and one day of beef soup and a very high glycine level and BAM!”

    Now I must read about under-methylaters and the recent discovery connecting people with histamin (undermethylation) problems with asthma, food allergies, celiac, ADHD/hyper-activity issues, depression, mental “illness”/suicidal tendencies, metabolic disorders and high levels of creativity, since by the age of 30, I had been “diagnosed” with basically all of the above.

    They say that under-methylation is hereditary. My mother’s mother was diagnosed Schizophrenic and died in a mental hospital (of gangrene of all things…) when she was in her 30s. I wouldn’t be surprised if my mother and various aunts and uncles thought (when I was an adolescent and young adult) that I had inherited my maternal grandmother’s “illness”. Sounds wonderful! Although I haven’t met either grandmother, since they both died when my parents were children or adolescents, I am directly connected with them by aspects of their genetic pattern that killed both of them early in life….

    Why mention this if I put myself at risk of being “judged” as mentally ill? Yes, I was “suicidal” until the age of 30+. Suicidal could be a philosophic stance, such as saying, “why go to Gastro-Enterologists if my FAP/Gardners is a time bomb ticking away deep within and will kill me early anyway; why have more surgeries?” I believe that the people who live with death hanging over their heads from early childhood (due to diagnosis and family history and death of parents) relate much differently to life and death, suicide and survival much differently than those who spent their childhoods, adolescency and early adulthood (before the ages of 45) never thinking about these difficult and “negative” possibilities, since a negative possibility isn’t a reality and can be conveniently ignored; they can’t truly understand the a-typical stress lived by the person diagnosed with such genetic and health differences… So, the person who displays unhealthy behavioral/mental traits automatically is diagnosed with one of so many possible mental illnesses, like my maternal grandmother. But, under extreme situations it is possible that one could consider the individual’s behavior a normal and (strangely) healthy response; like a baby crying directly after coming into this world… When a person suffering uncurable stomach cancer pleeds for euphanasia due to unbearable pain or unbearable nausea (probably not even classifiable as nausea if it is anything like what I experienced the 2 weeks after having my last surgery for J-Pouch) would you diagnose them with mental illness and suicidal tendencies?

    I’ve always wondered what was behind the diagnosis of my maternal grandmother as being Schizophrenic and what else had been happening in her life between birth and death; born into a poor immigrant Jewish family either in Russia or in New York City, the last of 12 children… You may be aware of the tendency of diagnosing women as “hysterical housewives” during that period of North American and European psychiatric history (1880s-1940s); there was very famous movie (possibly starring a young Meryl Streep) about a famous actress who was institutionalized for “hysterical housewife”… also a tendency towards institutionalizing early “American” and European suffragists for very similar diagnostic criteria; see the wonderful film starring Hilary Swank during the time of Woodrow Wilson.

    My mother would say, “of course my mother was schizophrenic; I lived with her and her antics!” But, my concern isn’t with the diagnosis so much but the circumstances and causes… Schizophrenia is also hereditary. So, which offspring of my maternal grandmother didn’t inherit certain traits of the “illness”? Yes, I’m turning the question on it’s head; Who of her offspring show aspects of mental illness; behavioral traits; obsessive/compulsive disorder, tendency towards depression and obesity, alcoholism, hyper-activity etc…?

    But, my concern is with the possibility that history has been unjust towards my maternal grandmother. In ways she has been treated as a pariah… a failed mother, a failed human being. And most of my life I’ve struggled with that same concern of being considered a failed human being.

    So, it is interesting reading that under-methylation, which is the genetic “defect” of producing too little histaminase enzyme is connected with asthma, celiac disease, food allergies, ADHD, seasonal allergies, depression and suicidal tendencies. You would think that if the child is diagnosed with histaminase enzyme deficiency, the concerned parents would remove carpets and pets from their houses, and control their child’s diet limiting high histamine foods (most berries, aged and processed foods, shellfish; the list is uncomfortably long)… and maybe their child won’t be diagnosed ADHD later on, meaning that maybe their elementary, middle and high school scores will be much higher, and possibly they won’t suffer insomnia, academic inferiority complexes and related mood disorders related with depression and will end up in good colleges graduating and entering into successful careers…

    But, here we are terminating another very long message to you extremely within the issue and ideas of allergies… But truthfully, you wouldn’t “lock up” a person for having issues with histamines, allergies, asthma and celiac disease. You would say, “it’s not their fault. Let’s seek a medical solution to this physiological issue…” just as no one would blame me for being allergic to penicilin, cats and dogs, for being asthmatic, for having FAP/Gardners Syndrome. However, so easy we forget the person’s personal background, family history and experience when they start behaving in ways that become stressful for us… That’s when the person becomes disposable and is swept into the trashcans of our consciousness, much like my maternal grandmother.

    But you my friend, didn’t give up and persevered, although without ridding yourself of constant suffering that the “normal” middle-class person doesn’t suffer. Not only did you persevere way beyond social norms considering the circumstances, you serve as an incredible source of information and inspiration for so many people. I, on the other hand, haven’t been “suicidal” and haven’t experienced depression since 2001. But, like you, I don’t have the luxury of looking at the symptoms and making changes the typical person makes and seeing the wonderful results. It’s much more complex and requires much more time, energy and consciousness for obtaining the same goal; health, security, comfort, success.

    Ross

  18. Laura

    These “multiple food intolerances” sometimes cause adrenaline-like symptoms after eating carbs with a high glycemic index. This is sometimes called “reactive hypoglycemia” or “carbohydrate sensitivity”. Usually “reactive hypoglycemia” doesn’t actually involve low blood glucose.
    I had “reactive hypoglycemia” for 25 years, and it went away when I eliminated all the foods that I had delayed food allergies to. (I call the “multiple food intolerances”, “delayed food allergies”, since they clearly seem to be allergies.) My body was doing something to suppress the symptoms of the delayed food allergies, that made me feel jittery after high-carb meals.
    Many hypoglycemia websites associate “reactive hypoglycemia” with allergies.
    I found out something about why delayed food allergies might cause “reactive hypoglycemia”.

    There was a study, Suspected postprandial hypoglycemia is associated with beta-adrenergic hypersensitivity and emotional distress that investigated people who described these adrenaline-like reactions to simple carbs or sugar.

    “Beta-adrenergic hypersensitivity” means that the beta-2 adrenergic receptors in the GI tract are more sensitive to adrenaline than usual, or more of these receptors have been made.

    Another function of these receptors is to inhibit the release of histamine from mast cells!

    So it makes sense that more of these receptors would be made in the gut, when the body is trying to suppress the symptoms of delayed food allergies. Antihistamines also help to suppress these symptoms.

    So if someone eats a food they have a hidden delayed food allergy to, the normal adrenaline release after eating the food makes them feel jittery, because the beta-adrenergic receptors are busy suppressing histamine, and this results in hypersensitivity to their adrenaline.

    The “emotional distress” mentioned in the study was “higher anxiety, somatization, depression, and obsessive-compulsive scores than controls”.

    I had a lot of anxiety, depression and some compulsiveness because of delayed food allergies. The somatizing part might simply mean that people correctly interpreted some of their emotional reactions as caused by the food they ate.

    Perhaps the beta-2 adrenergic receptors are also involved in suppressing other inflammatory mediators, besides histamine.

  19. Ross

    Hi Laura. I just noticed your response (I imagine to part of what I wrote preceding you…) I have this problem with re-reading something long I wrote days, weeks or months earlier. But, imagine I mentioned the night spent totally awake after preparing a wonderful bone “broth”, since it is recommended for improving sleep and strengthening joints due to the collagen/gelatin content in the broth… So, it is very interesting what you write about adrenaline increase in the attempt towards controlling the histamine response. Thanks for the link.

    Ross

  20. Laura

    Allergy shots might help with the “other food intolerances”. Dr. Carroccio has been researching “non-celiac wheat sensitivity”. He found that people with NCWS are roughly in 2 groups: those who seem to have pre-celiac disease and don’t have multiple food hypersensitivities, and those who have multiple food hypersensitivities that include wheat. See http://www.lab1.no/images/Marketing/Carroccio_et%20al_2012_Non-celiac%20wheat%20sensitivity%20diagnosed%20by%20double-blind%20placebo-controlled%20challenge_AJG.pdf
    The second group tends to be otherwise allergic – like to have inhalant allergies etc. See Dr. Carroccio’s recent review of NCWS at http://www.ncbi.nlm.nih.gov/pubmed/24533607
    Allergy shots tend over time to divert one’s immune system away from the TH2 antibody-mediated immunity. This happens over several years.
    So, it seems likely that over time, allergy shots would help with the “other food intolerances”.

    1. Laura

      ps The symptoms involved in the “multiple food hypersensitivities” in Dr. Carroccio’s research are similar for me to symptoms from the “other food intolerances” that I have, along with probable celiac disease. And they have other similar features.
      His two groups can overlap.
      So that’s why I’m conflating the “other food intolerances” that some people have with celiac disease, with his “multiple food hypersensitivities” that can occur with non-celiac wheat sensitivity.

      1. Jess Post author

        I totally understand. In my case I now know that my multiple food sensitivities are from having mast cell activation syndrome in addition to celiac disease (which I think may be due to my long delay in diagnosis of celiac, but I have no scientific evidence to back this up), but it seems that it must be multifactorial.

        1. Laura

          OK, but MCAS doesn’t seem like a complete diagnosis. It’s probably true that your mast cells are chronically activated somehow. But why are they activated?
          Isn’t MCAS consistent with some kind of poorly-understood allergic reaction in one’s GI tract – as described by Carroccio in his research on NCGS?
          You do have inhalant allergies, don’t you? Carroccio and others find many aspects of these delayed-reaction food allergies that point to a connection with other kinds of allergies.
          I think I’ve been so sick, partly because I inherited tendencies to allergies from my mother (maybe from my father too) AND tendencies to autoimmune disease from my father. So for me it also seems multifactorial.

        2. Laura

          I have made some progress in desensitizing my multiple food sensitivities, with my protocol of:
          10 mg Singulair, 15 mg loratadine 1.5 hrs before eating food;
          oral cromolyn 1/2 hr before eating food;
          then I eat ~20 mg of foods I have these delayed-reaction allergies to. I eat the less allergenic foods I’m sensitive to, once every 4 days; more allergenic foods, once every 8 days.
          This is just my best guess at what might work. I’m not aware of any research on this.
          I’ve had some success. I don’t get as sick from food reactions as I did when I started all this 7 months ago.
          Recently I ate 20 mg sweet potato without taking Singulair and loratadine beforehand, and I didn’t notice anything!
          Sweet potato is one of the foods I developed a reaction to recently. I get the impression it’s easier to reintroduce foods right after developing a reaction to them, rather than quitting the food completely for years.
          Also, I’ve gotten about 10-20 times less sensitive to dog allergen orally.

    2. Jess Post author

      Hi Laura,
      It’s good to hear from you. Thanks so much for sharing the info and link to the recent NCWS paper. I look forward to reading it (I’ve neglected this page for the most part while I’ve been on vacation for 2 weeks!)
      Are you aware of any other researchers looking into NCWS/NCGS and multiple food sensitivities?
      Jess

      1. Laura

        Jess,
        I’ve read a lot of articles, trying to find out about delayed-reaction food allergies.
        Carroccio’s recent review article has lots of references.
        It looks like different researchers are exploring the same phenomenon under different names.
        There are “gastrointestinal food allergies”. There’s “FPIES” and “non-IgE mediated food allergy in infants”.
        There’s a Norwegian group that published a summary of their research in 2011, “Perceived food hypersensitivity: A review of 10 years of interdisciplinary research at a reference center”. That group has written a lot of good articles. They were the ones who did that interesting research where they looked at people’s small intestine with ultrasound after they ate a food they were allergic to, but with negative blood IgE.
        I haven’t been reading much on this subject recently. But I would be interested in looking at that paper on “atopy and the gastrointestinal tract” that you bought. Have you received it yet?
        I have mostly been getting allergy shots. With a passion – I’ve been getting allergy shots 3 times a week. I think allergy shots will end up being (part of) the answer to my personal dilemma – my severe inhalant allergies that forced me to stop living in my house and make a normal life impossible. I’ve been getting allergy shots for 4 months now and my allergies are already less horrendous.
        I got allergy shots from 2001-2005 but because of a really bad doctor, I was “flunked” out of allergy shots. I would get sick after each allergy shot for several days, so I never advanced on the dosage, and after several years an allergist told me, no more allergy shots. It was a *horrible* medical decision. I realize now that the allergist could have suggested antihistamines before the shots – H1 and sometimes H2 antihistamines help people tolerate allergy shots. Also, the allergist could have found out which allergens were giving me problems, and raised the dosage on those vials more slowly.
        But the allergist had a cookbook, thoughtfree approach to allergy shots. It was good for that practice to do things in a cookbook way. But not good for their difficult patients!
        It was disastrous to abandon the allergy shots, because my allergies got worse to the point of being a prolonged crisis.
        For many years I relied on allergen avoidance and some medications, but it never worked very well and I’ve been sick a lot of the time. It wasn’t until it turned into a crisis and I found a good allergist in NYC, that I got effective medical help.
        I live in a small town – Ithaca NY – and there weren’t good allergists locally, back then. Now, my allergist in NYC manages my allergy shots from a distance. Now, I’m being aggressive about managing my own allergy shots. I’m getting allergy shots with dog in them twice a week, increasing the dose each time so I can get to maintenance quickly. I suspect I might have worse reactions to allergy shots with molds, and need to increase those more slowly. I started taking 15 mg loratadine before shots, that seems to help with reactions. I’m also going to try Zantac (an H2 antihistamine) and see if that helps.
        Also, I’m still getting Xolair, and that may also be helping me tolerate allergy shots. I have been able to raise the dose and it looks like I can make allergy shots work for me.
        oh, but that awful medical care back then … *fume* *fume* *fume*

      2. Laura

        ps Also these delayed-reaction food allergies are researched in connection with irritable bowel syndrome. Researchers seem to prefer researching problems with objective symptoms like IBS, so they concentrate on that aspect rather than the “mental fog” and other subjective symptoms.

  21. Natalie

    This is very helpful, I was diagnosed almost 11 months ago. After a month of GF, I went to the DR and was still sick.. turns out the medicine I was taking contained gluten. When I finally completely changed my diet it was amazing how well I felt, and now I am starting to feel like I did when I was consuming gluten. I am not sure what it could be, I eat pretty healthy and I try not to substitute/eat too many grains.

    What is the best approach? Should I start with an AIP/elimination diet? Should I go to the GI doctor? If I go to the doctor, what do I tell them? When I went for my last checkup they said my markers were slightly off and all they said was I was still eating it (basically saying I was lying, but why would I do that… knowing how awful I would feel)?

    I should also mention, that my husband is not completely gluten free. He is super helpful and good about watching cross contamination. I am also extremely cautious. And normally I am the cook at our house, so he will eat whatever I make. But he will have an occasional sandwich.

    I am also a runner, so thank you for sharing your success story. I have hit a slump now with feeling sick all the time. You are my new favorite blog!!

    1. Jess Post author

      Hi Natalie,
      It’s nice to “meet” you. If you are at all on the spectrum of having “refractory” celiac disease, then the first thing you should do, if possible, is to sit down with a nutritionist who specializes in celiac disease to make sure that you are not getting cross contaminated. Like you, I had a recurrence of symptoms at about the 18 month mark and it was due to taking a medication that was cross-contaminated during manufacturing (did not contain any gluten ingredients).
      I had the fortune to be able to talk to Dr. Dan Leffler by phone last spring when I was writing an article about refractory celiac disease for Gluten Free Living magazine, and he did say that more and more GI doctors were prescribing the “Fasano diet,” also called the “Gluten Contamination Elimination Diet” for refractory cases, so this may be something else to pursue with your GI specialist.
      I’ve learned through my own celiac journey that a lot of my ongoing issues with foods, like soy and sulfites, have not been due to gluten contamination at all, but instead due to an entirely separate condition called mast cell activation syndrome. Treatment for MCAS and taking a high dose probiotic have made a HUGE difference in my ability to tolerate foods that I previously couldn’t tolerate.
      Hope this helps. As my body has healed it’s gotten easier and easier to run, so I am optimistic that you will reach a point where you’ll be able to resume doing so too. Good luck!!
      Jess

  22. Heather

    I only just found this post so really couldn’t read all the comments, so if this has been mentioned, I apologize. It sounds like you are describing cross-reactivity.

    I suffer from a lot of food sensitivities and am still trying to nail them all down. I’ve decided to go on the paleo diet on the recommendations from a nutritionist and a chiropractor. I want to get it all sorted because I have one relative that was diagnosed so late in life, she wound up with Ulcerative Colitis. Earlier generations had odd things happen at the end of their lives (including bowel cancer) that many members of my family suspect to be the result of undiagnosed celiacs.

    Here is a link my sister sent me about cross-reactivity:
    cross reactivity

    1. Jess Post author

      Hi Heather,
      I really appreciate that you took the time to comment and share your experiences.
      I have tried to read and learn about the science behind gluten “cross-reactivity” and the actual journal articles I’ve read have been very weak. I have actually personally corresponded with Dr. Amy Myers (the author of the article that you linked to) and read through the journal articles that she cites, and I still don’t buy into this theory. I do believe that we can have other food intolerances (I have experienced this myself as a result of high histamine and high sulfite foods), but I do not believe that the food intolerances are from our bodies mistaking these foods for gluten.
      Just my two cents.
      Jess

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