My Journey

I first learned about Celiac Disease during medical school but was unaware that I was suffering from it and had been for years. I was diagnosed when I was 33 years old, about 25 years after my symptoms first started.

As a child I suffered from recurrent stomach aches, cramping, and diarrhea and was told that I had a “nervous stomach.” I remember spending a lot of time doubled over in pain and not wanting to eat.

As a teenager I developed a cystic, itchy rash all over my back and shoulders that left horrible scars (dermatitis herpetiformis).  I was told it was cystic acne. I had a mystery “mono-like” illness my junior year and slept for hours everyday after school. My abdominal bloating was so bad during adolescence that I looked like I was 7 to 8 months pregnant at times.

In college I was treated over and over again for stomach and intestinal ulcers but my symptoms got worse instead of better. I had an upper GI (barium swallow) performed which did not show ulcers and was normal. I was referred to a GI specialist for the first time. He did not examine me, diagnosed me with Irritable Bowel Syndrome (I.B.S.), and told me that my digestive complaints were likely due to repressed sexual abuse. When I told him that I had never been abused, he insinuated that I was lying, and recommended that I get counseling and eat whole grains.

I had increasing severe insomnia as college progressed, which seemed to correlate with beer consumption. I remember wondering if I was allergic to beer…

In my twenties I developed hypothyroidism (underactive thyroid gland) from Hashimoto’s disease. I had moderately severe anemia, which every M.D. chalked up to menstruation, even though my periods were very light. I developed joint pains in my fingers, knees, and ankles and had to stop running because of chronic knee clicking, swelling and discomfort. I was evaluated for Lupus, Lyme Disease, and Rheumatoid Arthritis multiple times. At one point I was diagnosed with “atypical lupus.”

I was in medical school and residency during this time so I was around doctors all of the time. Every time I asked others for advice about my symptoms (joint pain, anemia, thyroid disease, bloating, etc.) and normal autoimmune work-up, I was told that my symptoms were probably due to a combination of “stress” and I.B.S. I began to get large ulcers in my mouth and to lose hair. I felt hungry all of the time and subsequently ate all of the time, but never gained weight (which I admit, thought was a good thing at the time). I developed depression.

I had two miscarriages when trying to conceive. I struggled to breastfeed all of my babies due to having a low milk supply.

After my 3rd child was born in 2009 I was so sick that I feared that I had some sort of cancer. I had daily diarrhea, bruises all over my body, hair loss, arthritis, and low back pain. I had huge sores throughout my mouth, ran a low grade fever, had jaw pain which made it difficult to eat, and recurrent yeast infections. My brain felt like mush.  I felt like I was “hungover” every day even though I wasn’t drinking any alcohol.

During this postpartum time period I had the most memorable GI “bug” of my life.  I spent 2-3 days with vomiting and diarrhea and I ate nothing. Despite being sick with a stomach flu/virus, most of my symptoms went away and I felt better than I had in ages.  Then, when I did start to eat again, lots of foods that contained wheat, like crackers, noodles, etc., all of my symptoms came back with a vengeance.  I realized that I was getting sick from something in my diet and I was, fortunately, diagnosed with Celiac Disease a few weeks later. I have been gluten free since then and I have never looked back (although I do miss pizza, beer, tiramisu, and my grandmother’s apple pie from time to time).

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40 thoughts on “My Journey

  1. Chalice Sandheinrich

    Thank you for your post. I have suffered with most of the exact same symptoms you have since my early 20′s and I’m 53 in September. Let’s just say trying to be a reliable civil servant has been quite a challenge over the last 33 years, but I must be doing something right when I am here because it’s been tolerated, not so well at times, and I’m still employed. In doing all the research and reading all the different posts of those suffering as well, I honestly believe celiac disease is the crux of the majority of my health problems. However I was blood tested for it and it came back negative. I cried, as much as I did not want this disease after seeing so many doctors and being diagnosed with IBS, ischemic stomack, spastic colon, thin stomach lining, etc, I so wanted this disease to be my answer. I was told by a friend to ask for a biopsy of my stomach and am wondering if I should do so or just go on a gluten-free diet and stick with it. I too have felt like I was 6-7 months pregnant at times, can belch louder than any trucker when battling my digestive problems, have suffered from chronic insomnia since my early 20′s (not sleep apnea), have achy joints, lower back pain, have always had very thin hair and very brittle nails. I am very small build and have never had a weight problem. Seem to be hungry all the time and do eat, but expecially the last 4 years have been afraid to eat. To try and plan any type of activity with friends or family is so hard to do because I never know if I will be feeling well or if I’m going to be up all night and tired or trying to recover from a 3-day bout of gut-wrenching stomach pain, coupled with total weakness and tiredness and a stomach that sounds like it’s making volcano erupting sounds louder than Mount St. Helen’s. I have been doubled over so many times in pain and turned white as a ghost at times, couldn’t move off the couch, couldn’t finish my grocery shopping, make it to that wedding, etc., over the years. Time and time again I’ve had to call into work with complaints of being up all night with stomach problems and not able to function due to lack of sleep. I had colonoscopies, upper and lower GI’s over the years, MRI’s, CAT Scans, x-rays, bloodwork, etc and spent way too much money for someone to be missing that this truly might be Celiac Disease. I would like to know for sure and am wondering what exact testing I need to ask for? I’m not a hypochondriac and I want to be healthy and live a good life for 40 more years or so. Thanks again for your posts and education to all of us on this subject.

    1. Jess Post author

      Hi Chalice,
      I just read through your story twice. I can’t believe that you have suffered for so long…my heart goes out to you. It definitely sounds like there’s a good chance that you have either Celiac Disease (your story mirrors mine in so many ways) or Non Celiac Gluten Sensitivity, also called NCGS. Although there has not been a ton of research on NCGS, some patients with NCGS get extremely ill from ingesting gluten.

      A few questions for you:
      1. How long ago did you have your upper GI done? Did you have an intestinal biopsy, or did the GI doc just visually check things out? If you had a biopsy done, you will need to get the report and make sure that at least 4-5 tissue samples were obtained, including one of the duodenal bulb. A lot of biopsies are not done correctly, since the intestinal damage from Celiac Disease can be “patchy.” So, there are a lot of people with Celiac Disease who are told that they do not have it due to the biopsies being done incorrectly, but they actually do.

      2. Have you ever tried to go gluten free? I felt a ton better within a week of being off of gluten and within a month or so I felt like a totally new (healthy) person. Now, if I am exposed to even a trace of gluten, I get extremely ill (almost immediate GI symptoms, followed by 5-7 days of autoimmune symptoms including joint pain and inflammation.) If you have gone GF at some point, and had a dramatic improvement in your symptoms, then you know that you have either Celiac Disease or NCGS.

      3. Do you feel unwell after drinking wine? If you do, then I will talk more about problems with sulfites, because after hearing your story, a lot of what you describe can also be associated with a sulfite intolerance.

      The traditional medical teaching is that Celiac Disease is diagnosed based on symptoms, having one or both of the Celiac genes (HLA DQ2 or HLA DQ8), positive antibodies (endomysial IgA and tissue transglutaminase (TTG) IgA, plus a new antibody test called the deamidated gliadin peptide which is a little more sensitive), and a small bowel biopsy which shows villous blunting. However, more and more GI docs are omitting the biopsy, and if a patient has symptoms, genes and/or family history of Celiac Disease, and positive antibodies, they are being diagnosed as Celiacs. The flip side is that there are some Celiac patients who have normal antibody testing, but do have abnormal intestinal biopsies which show villous blunting. Some of these patients are IgA deficient, others do not mount an antibody response for unknown reasons. Either way, if you decide to pursue formal Celiac testing, it is very important to stay on a gluten containing diet until all of the testing has been completed.

      But, considering that you have lived with symptoms for so long and have already seen so many doctors and had so many tests performed, you may just want to diagnose yourself at this point. There seem to be a lot of people who do this, who realize that their bodies are getting very sick from gluten, so remove gluten, feel better, and choose to remain gluten free for life. Some call themselves Celiacs, some say they are “gluten intolerant,” and some say that they have NCGS.

      I am not sure if this helps or makes it all seem more confusing. I guess that I am trying to say that you do have options available. Please let me know if you have questions and thank you for reading.

      Jess

  2. Laura

    I am also a physician, a mother of 5 kids (ages 7-14), and a runner who was recently diagnosed with celiac disease. Like you, I have had a “sensitive stomach” since childhood, which I now realize was probably a gluten allergy. I could eat a tremendous amount of food without gaining weight and had intermittent itchy rashes that were attributed to some environmental allergy (“change soaps”). I was also evaluated for rheumatoid arthritis due to swollen and painful joints, but all tests were negative. As a teenager, I was diagnosed with Graves disease (autoimmune hyperthyroidism) and treated with radioactive iodine and subsequent Synthroid maintenance. My various symptoms in medical school were chalked up to being caused by late nights and stress. More recently, I began having worsening abdominal pain after meals and heavy bleeding from the bowels, which scared me that I might have something serious like cancer. The bleeding worsened after long road races, and now I know it was probably from the carb loading pasta dinner I had eaten the night before. The bleeding caused me to finally get serious about being evaluated, and I was found to have celiac disease. Genetic testing shows that I am homozygous for DQ2. Of my 5 children, my 13 year old son has symptoms of gluten intolerance and has been on a gluten free diet with dramatic improvement. His genetic test came back as being DQ2 heterozygous, since serological studies would be inaccurate while gluten free. He did not want to get sick with a gluten challenge as it wouldn’t change the ultimate outcome. My two younger daughters, ages 10 and 7, have either unexplained rashes or abdominal pain with only certain foods like pizza. Their celiac panels were negative with adequate IgA levels, so I am assuming they probably have varying degrees of gluten sensitivity. My other two children (ages 14 and 11) are completely asymptomatic and have had no tests done. My question is, what type of further testing, if any, would you do on my children? You mentioned that your 4 kids are gluten free. Is this simply because of your diagnosis and the general health benefits or did you have your children tested? Since I’m DQ2 homozygous, each of my kids will be DQ2 heterozygous at a minimum. At this point, I have let symptoms dictate their diets without a specific diagnosis for them. I hate to have them follow a gluten free diet “just in case”. My older son’s symptoms were dramatic enough that he is gluten free by choice and pretty compliant. Our rule is that if he chooses to cheat with gluten, we don’t want to hear any complaining. That works well. Please advise me regarding what type of testing and follow-up you did with your children after your celiac diagnosis. Feel free to contact me directly as well. Our experiences appear to be quite parallel and similar.

    1. Jess Post author

      Hi Laura,
      I can’t believe that we have so much in common and I am so glad that you wrote. I hope that you are feeling better now that you have been diagnosed and are gluten free. I also had GI bleeds after long runs, and that has totally resolved since going off of gluten.
      I had to make my entire household gluten free just last fall (about 2.5 years post-diagnosis) because I developed a peripheral neuropathy and M.S. type symptoms out of the blue. I had a full neuro, autoimmune, and infectious work-up, all of which were negative, so my neurologist was convinced that I must have been inadvertantly being exposed to gluten in my “shared” household. All of my other symptoms (IBS, joint pains, anemia, etc.) cleared up when I went GF in 2010, so I had thought that things were well controlled with me keeping my own GF foods, condiments, cutting boards, toaster, dish rag, griddle, etc. The neuro symptoms disappeared within about 6-8 weeks of removing gluten from my home, and they returned only one time, shortly after my last “glutening” in Jan. 2013, so I am convinced that the key to the resolution has been the GF household.
      I have not had my children genetically tested, but I know that they are at super high risk because my husband is DQ2/DQ8 positive (he was evaluated by a GI a few years ago and found to have EoE, not Celiac Disease.)
      Although my kids do not eat gluten in our home, they do eat gluten outside of the home, at school, birthday parties, nights to a local pizza parlor, donuts at Church, etc., so they all have a small, steady dose of gluten in their systems. I think that this is important, as I’d like their Celiac testing to be as reliable as possible. Mine are a lot younger than yours, they are 7, 5, 3, and 1. For the 2 oldest, starting at age 4, we have had our pediatrician order Celiac antibody panels at their well child visits every other year. Just this past year the panel started to include the DGP antibody, which has the best sensitivity in small children, so I may have my 1 year old tested in the next few months because she is very small. None of them have had any overt symptoms of gluten sensitivity, fortunately, but I am sure that at least one of them will develop problems with time.
      I would love to continue to communicate from time to time. I was going to reply directly to your email, but decided to post my reply in hopes that others may read it and potentially be helped. You can write me at any time at thepatientceliac@gmail.com.
      Jess
      P.S. What is your specialty? I am a Neonatologist.

  3. Alison

    Hi there
    Thanks for sharing your story. I was just diagnosed as a “Silent Celiac” at age 39, after chronically low iron stores for the past 10 years. Eventually after iron supplementation and injections didn’t work, my GP ordered a Celiac blood test. Interestingly, I have had 3 miscarriages (and 3 healthy babies), and chronic low milk supply problems as well. I have a couple of questions — my GI doctor said there’s no point in getting my kids tested while they are still young. But it seems you are getting your kids tested, right? Why is that? Also — he said that because I am a Silent Celiac and have no GI symptoms from eating gluten I don’t need to be quite so hypervigilant about cross-contamination, and eating “hidden” gluten from things like soy sauce when I am out at restaurants. Is this a common opinion among doctors? It seems unusual from what I have read. It is certainly a relief to not have to be so rigid about eating GF but I am a bit skeptical that it will allow my gut to heal. Any advice/insight you could give would be great.

    1. Jess Post author

      Hi Alison,
      Thanks for stopping by and leaving your comment and questions. I have been on a bit of a hiatus with this page (I hit a point where life was feeling unbalanced, which I’m sure, as a mom, you can appreciate!) but will be back intermittently for the rest of the summer and fall. First of all, I am glad to learn that you have been diagnosed and are now gluten free. I am unable to give you true medical advice, but I can talk as a “friend” if that is okay with you.
      We are in the situation of knowing that my husband, although not a Celiac, has two copies of the Celiac gene (he was tested a few years ago). Because of this, my 4 kiddos are all at very high risk of developing Celiac Disease. In the absence of having symptoms, I am starting their blood screening at age 4, as this is about the earliest that screening antibody tests can be accurate in small children. Interestingly enough, in the paper which I summarized in my most recent post in which 41 pediatric cases of Celiac Disease were diagnosed, the bulk of the cases were children with “silent” celiac disease who were screened because of a family history. Most doctors recommend that all first degree relatives of any Celiac patient be screened (parents, siblings, and children). I have had success with my parents and children getting screened, but all 4 of my siblings have declined because they cannot imagine having to live life without bread. The bottom line is that I believe that having decades of untreated Celiac Disease really did a number on my body and played a role in the development of my other autoimmune issues…something which I’d like to do my best to prevent my children from experiencing.
      Secondly, I hate to say it, but if you have Celiac Disease, you need to be 100% gluten free all of the time. I am sorry to say, but the advice which you received from your GP might be well intentioned, but it is not up-to-date at all. I have participated in some on-line physician-only forums, and the misinformation which I’ve seen coming from some of my medical peers is astounding. I wish that I could tell you that we do not need to be vigilant about cross-contamination, but we really do. There have been some decent studies showing that the majority of Celiacs’ guts do not properly heal after 2 years on the GF diet, and I truly believe that cross-contamination in processed foods is the leading culprit.
      I wish you well on your journey and it sounds like you are off to a great start with your reading and research. It is very difficult to navigate the GF world at first, but it gets much easier, and as a result of my diagnosis my family eats much healthier than we did in the past. My biggest issue continues to be the social isolation and no longer being able to freely eat whatever I want at parties, weddings, restaurants, etc., but as soon as I start to feel sorry for myself I remind myself that things could be much, much worse.
      Jess

  4. Cris

    Thank you for sharing your story.
    Our daughter was diagnosed in April and was very sick. At her four year old check up she was 36″ and just 27 pounds. Our son doesn’t have symptoms, but does get reoccurring mouth ulcers. Need to get him tested.
    It is mind blowing for me to read the account of Celaic from an adult. I had no idea.

    1. Jess Post author

      Hi Cris,
      It is nice to meet you on here and I hope we can possible meet in the future. Yes, agree that your son needs to be tested too. I am at the International Celiac Disease Symposium in Chicago right now and several of the experts have discussed the fact that Celiac Disease can be associated with recurrent canker sores/mouth ulcers.
      As for my story, thank you for reading it. There are so many of us who have suffered with symptoms of untreated Celiac Disease for decades. I am fortunate that it was detected when it was, as I am now living life as a “healthy” person (which feels great!)
      Jess

  5. Ada

    Oh my. I feel like I am reading about myself. I was diagnosed 3 years ago at age 42 after losing about 30 pounds in 3 months. I had neuropathy so bad, I was sure I was going to end up in a wheelchair. Joint and muscle pain that just had me crying, lying on the couch night after night, waiting literally to die. Crippling anxiety attacks. Bruising that looked like I was beaten. Hair falling out in clumps. I was never so scared in my life, as I just got blank stares from my Dr. I did not have typical stomach symptoms, so it was harder to diagnose. I also went the MRI route, hoping for no brain tumours or MS. I was actually diagnosed by a neurologist that I was sent to for the neuropathy and he ran a MILLION blood tests, which finally showed my tTG antibodies off the charts, and then lights went on. So three years later, the neuropathy is MUCH better but recently, I have had some issues with it along with anxiety and joint pain and now wonder if I contaminated myself somehow. I am very careful but who knows with this stupid disease. Thank you for sharing, it makes me feel like I am not alone :) Not that I wish this on anybody.

    1. Jess Post author

      Hi Ada,
      It is so nice to “meet” you on here. You are definitely, definitely not alone. One of the main reasons that I started this page last year was that I needed support…I had thought that I knew everything about this disease, but when I developed the neuropathy last year, I realized how little I really knew and how surprising day to day life as a Celiac can be!
      I just returned from the International Celiac Disease Symposium in Chicago a few days ago, and the experts really emphasized the importance of taking vitamins and supplements. We saw case presentations of people on the GF diet developing all kinds of crazy symptoms after being GF for a while, such as brittle hair and nails, arthralgias, muscle pains, palpitations, etc. They stressed that we all have our vitamin and mineral levels monitored on a regular basis and that we need to make sure we are optimizing intake of iron, zinc, calcium, vitamin D, the B vitamins, fiber, and in some cases, even Magnesium.
      Another thing that happened to me was that I developed additional food intolerances after going GF, first to soy protein and then to sulfites. There are several hypothesizes for why this happens, but whenever I accidentally eat soy I have pretty immediate nausea and head aches followed by joint and muscle pains the following day. When I ingest sulfites my heart races, I flush, and I get IBS symptoms and my airway starts to constrict, so I now carry an Epipen. Just some ideas for you, but I know that our bodies are all very different, so there’s a good chance that what works for me won’t work for you (and vice versa).
      I hope we can communicate from time to time. I have really enjoyed getting to know others with Celiac Disease as before I started this page I knew only 2 people with it and now I have met hundreds!
      Jess

  6. Annemiek

    Hi Jess, Thank you so much for doing this. I just found you on facebook. I just can’t get over how ill informed the medical community seems to be, and how little interest or curiosity my doctors have shown over the years. I don’t really have any stomach symptoms, but I have been chronically fatigued for years. Last year, I had to stop working again (still haven’t been able to go back), lost over 15% of my bodyweight and was hungry all the time, no matter what I ate. Mouth ulcers, brain fog, constipation, thirst, very often feeling cold were very common things for me, as is insomnia. Every blood test ever ran came back ‘ok’, except for Vitamin D last year. The tests for Celiac recently came back negative, as did the biopsy (though I think only two biopts were taken in the bowel, as well as one in the stomach. I have been on Paleo-AIP for 6 months now (which is grain, legumes, sugar, milk, nuts, noghtshades, eggs and seed free), which has helped tremendously in managing my appetite. (I thought I was going crazy from hunger at one point). Haven’t been able to gain any weight though, sleeping has improved a little, so have my general energy levels, but it’s baby steps and very very slow. Still have a ‘second opinion’ to go next month in a University Hospital, but it’s so easy to lose hope. If they don’t find anything, I’ll be back at the ‘you’ll have to learn to live with it’ I’ve been hearing for 25 years. I’m thinking Gluten sensitivity is part of my problems, (the two weeks of eating bread after 6 months of being gluten free caused a massive amount of anxiety, fatigue and restlessness, part of which stopped the day after I stopped eating bread, but my ability to sleep took 2 months to get back to how it was before!). But there’s something else/other things going on as well – or it would have cleared up much better. My mom has all sorts of GI issues, including IBS, cronic constipation, weight loss and a variety of neurological symptoms. She also hasn’t tested positive for Celiac, but she is doing a whole lot better since she is gluten free. It’s great that Celiac gets more widespread attention, hopefully more people will be diagnosed much earlier. I’ll be reading your posts with interest!

    1. Jess Post author

      Hi Annemiek,
      Thanks so much for taking the time to introduce yourself and share your story. It sounds like we share a lot of the same symptoms. How long ago did you undergo your gluten challenge?
      I recently attended the International Celiac Disease Symposium in Chicago and the experts there really emphasized the need for at least 4 (and optimally 6) biopsies of the small bowel being taken during an endoscopic evaluation for Celiac Disease. If not enough biopsies are taken, Celiac Disease can be missed. That being said, you may actually have Celiac Disease. Or, like you mentioned, you may have non celiac gluten sensitivity, which can be just as bad (causes a bunch of horrible symptoms throughout the systems of the body but without the intestinal damage that is the hallmark of Celiac Disease). Did you have elevated TTG IgA/IgG antibodies when you were back on gluten?
      The other problem/diagnosis to keep in mind for both you and your mom is something called “mast cell activation syndrom” which is a disease of the innate immune system, is associated with multiple food intolerances and IBS systems, does not show up on small bowel biopsy, and seems to affect people with both Celiac Disease and NCGS. I developed a sulfite allergy last year and just recently discovered that I have mast cell activation syndrome (MCAS) as well. I have put some links up on my FB page recently regarding problems with mast cells and I’ll be writing about it little by little over the upcoming months.
      Hope to hear from you again at some point!
      Jess

      1. Annemiek

        Hi Jess, thank you so much for your comments. Can’t quite believe you have the time to do that, with your family as well as being a MD yourself. Really appreciate it!
        It was kind of reassuring, as well as outraging to read what you had to go through on your journey before you were diagnosed. Hopefully, some day this will be different for others.. And I do hope I will get a diagnosis soon. Feel like being parked on the side line in life, and at 40, that’s not the place I’d like to be!
        Answering your questions: they didn’t bother to test my antibodies when I was back on gluten. Actually, the only time they tested, I was off gluten and they knew about that. The gluten challenge was about three months ago. I have been reading about MCAS after your reply, and I’m sorry you were diagnosed with it. It doesnot sound like anything good. I’d imagine you have enough on your plate with your pre-existing conditions. WHat about my story made you think of it? I don’t really recognise the symptoms of hives, anaphylactic shock, respiration and skin problems. Maybe I got it wrong in looking it up? Really appreciate the attention you put into your site, it feels like a blessing to have an MD in the ranks!

        1. Jess Post author

          Hi again,
          Sorry for any confusion. I brought up MCAS because there are “classic” symptoms like those you mentioned (anaphylaxis, rashes, wheezing, etc). but it can also affect almost any system of the body and cause “atypical” symptoms too like IBS, food intolerances, neurologic symptoms, brain fog, canker sores, etc. Like Celiac Disease, it is a great masquerader (not sure if I spelled that right or not!) Doctors are not yet looking for it in patients because the first case reports were just published in 2007 or 2008, but a recent paper out of Germany showed that 14% of people had MCAS when screened. So, I think we will all hear more and more about it with time, like Celiac.
          I keep talking to people about it because almost all of the people who I have met on the MCAS forums have either Celiac Disease or non Celiac gluten sensitivity. There seems to be a link between the 2 problems.
          I hope your 2nd opinion goes well next month. Thanks again for introducing yourself!
          Jess

  7. Annemiek

    Thank you for your swift replies. And I will definitely look into MCAS further, and bring it with me into the Dr’s office next month (will be trying to do so with care). Good luck on your journey too, and I will very much look forward to your future posts.

  8. lu

    hi, i wanted to ask you what kind of bool tests showed that you where celiac. i have the same symptoms but thet did an endoscopy and some Ig tests and everything seems normal. thx a lot!!!

    1. Jess Post author

      Hi Lu,
      I had a total serum IgA, which was normal. I had very high tissue transglutaminase (TTG) IgA antibodies, as well as very high endomysial IgA antibodies. These are the most common antibody blood tests for celiac disease. My tests were done when I was still eating gluten. One of the most common causes of falsely negative celiac antibody tests is when they are done after a patient goes on the gluten free diet. Having a deficiency of serum IgA can also cause the tests to be falsely negative. I hope this helps.
      One other diagnosis to keep in mind is non-celiac gluten sensitivity. It can cause almost identical symptoms to celiac disease, but the celiac antibodies are often totally normal and there is not damage seen on small bowel biopsy.
      Jess

  9. Buffie LaRocca

    I want to thank you for posting this beautiful blog. I’ve been expecting I have this, or at least a major intolerance.
    In the last 3 years, I have had 2 miscarriages, a premature baby, insane brain fog, TMJ that came out of no where, migraines, vision changes, strange joint pains…. the list goes on and on.

    I mentioned gluten to my GP and told him that I went gluten free for a few months and then fell off the wagon and that is when things got really bad fast. His response was “gluten free is a new diet fad, just like low carb. It’s not the cause of your problems.” He dismissed alot of things I said and I am searching for a new GP. I just really want to be tested without begging and proving I need the test!

    This year has been filled with MRI’s, CT scans, MS scare, anxiety that is completely not me. I was sure I had Lupus or Lymes (been tested for both and am negative.) Brain fog that is out of this world. And horrid, horrid TMJ that came from no where. (see, I proved the brain fog, because i just realized I already wrote this!)

    I just want to thank you for taking the time to do this…… Regardless if this is a confirmed diagnosis for me, I know I feel better without Gluten and I am feeling like it’s possible to do this for myself.

    Do you do any coaching?

    Best,

    Buffie LaRocca

    1. Jess Post author

      Hi Buffie,
      We really do share a lot of the same symptoms. I was also evaluated for MS last year when I developed a peripheral neuropathy secondary to celiac disease. I am a “super-sensitive” which means that I react to very small traces of gluten cross-contamination and get neurologic effects (neuropathy and brain fog).
      I just finished doing an interview for the magazine “Living Without” and the writer who interviewed me said that the expert she also interviewed stated that those of us with neuro symptoms are indeed the super-sensitives. Another problem that I’ve developed since my diagnsosis in 2010 is that I have other food intolerances, namely to soy protein and sulfites. I am not sure if the soy issue has always been there and that in going GF that I just increased my intake of soy, or if it is new. Taking probiotics, B vitamins and folate, and Vitamin D supps has helped me a ton.
      I really do hope that you find a new physician who will take your concerns seriously and help you on your journey instead of dismissing your concerns. As for coaching, I am not sure what my future will hold. Right now I really enjoy having this page and meeting and interacting with others with celiac and gluten sensitivity, but I often have to put it on the back burner because of all of my family and work responsibilities!
      Anyway, I hope that you start to feel better and please feel free to pipe in at any time with questions, comments, etc either on here or on Facebook!
      Jess

  10. shannon

    I just came across your website and am so thankful that I did!! I always had canker sores as a child that only intensified and became more painful as I got older. Whenever I went to the dentist, I was reprimanded for not brushing my teeth enough, not flossing, grinding my teeth… I brushed EVERY day and flossed EVERY day but had SO much work done on my teeth. I had a geographic tongue that hurt and was told it was because my father had psoriasis. I had tonsilar stones and was told that it was because I had strep so much as a kid. I have always had the “sensitive” stomach and quit drinking milk about 10 years ago. I would wake up a few times each year with the chills and terrible stomach pains and have diarrhea for hours and then fall back asleep. I went to two GI doctors along the way who diagnosed me in about two minutes and said I had IBS. I had heartburn so badly that it felt like my bra was on too tight and was told to take PPI’s. I had such terrible migraines and saw two neurologists who said it was hormonal. I asked a doctor that I worked with about 8 years ago to check my vitamin D and got the eye roll but she obliged me. It was 14! Did anyone wonder why it was so low since I lived in Arizona? Nope. Just given supplements. I had a hysterectomy because of bleeding and then it was figured out that I was in early menopause when I had hot flashes even though they left my ovaries. I went to the doctor recently and told her that I felt like I was dying. She drew labs and my ferritin was 10. My zinc was low as well. She told me that I must be bleeding internally even though my hemoglobin was normal. I said no! Something else is wrong. I had recently sent off for the 23andme genetic tests and it said that I was positive for the HLA gene and at higher than normal risk for celiac and some other autoimmune disorders. I mentioned this so my doctor added celiac labs and IGA/IGA gliadin and they all came back sky high!! Finally at the age of 50, I AM NOT A HYPOCHONDRIAC after all. Gluten free for two months with some bumps along the way but for once, I see light at the end of the tunnel. Ironically, I am a Nurse Practitioner and I am now looking back at my own career and wondering who I should have tested along the way. WE NEED TO EDUCATE!!!

    1. Jess Post author

      Hi Shannon,
      Thank you so much for introducing yourself. It’s nice to meet another celiac who is also a healthcare provider (there are at least a handful of us who have finally been diagnosed).
      It seems that our journeys to diagnosis parallel those of many who are diagnosed during middle age (years of IBS plus a bunch of other symptoms that on the surface appear to be unrelated, but are all gluten-related). It’s really mind boggling.
      I feel fortunate that I was diagnosed when I was and that I have been given my life back. It’s truly great to feel healthy and this diagnosis with celiac has had me prioritize my health in a way that I never did (especially during my medical training years when I lived on diet soda, nutrigrain bars, and lean cuisines). I cringe when I think back to how poorly I used to eat.
      Like you, I am trying to spread awareness. Let me know if you’d like to somehow collaborate/brainstorm on ideas how to best do this….
      Jess

      1. shannon

        Jess,
        I would love to figure out some ways to get the word out! My brother’s doctor refused to test him because he was not having diarrhea. I have a friend with infertility, graves disease, irritable bowel and a ferritin of 7 and her doctor did not want to test her for celiac. She did not even know what labs to order! It is my fear that there are so many like us out there being labeled as chronic fatigue or fibromyalgia and feeling like they are slowly dying a little more each day!! I gave a research paper to my dentist and periodontist regarding being more aware of celiac in the dental patient. I have told two prior doctors about my diagnosis (both were very surprised).
        My husband owns a commercial bakery (yes, a cruel joke but true!). We are going to speak together at a local baking institute regarding the importance of celiac and cross contamination. We are also supporting local gluten free bakeries.
        As I start to feel better, I want to shout about this from the rooftops! Let me know your thoughts – I’m in!!

        1. Jess Post author

          Sounds good. Whenever the time comes that I can ramp up my efforts to spread awareness, you are in! I would love to eventually be able to travel around to medical schools and give a talk on my story (symptoms, delay in diagnosis, what it’s really like to live with this disease, etc). Perhaps we could team up with a few other health care providers?

  11. Sarah

    I suffer day in and day out from many of these symptoms that are being discussed and I have reached a point of accepting that I’m just going to feel this way forever. Then I went to my family Dr. and she referred me to this website and I’m starting to think… maybe there is hope. But a small part of me feels disappointed because every time I think I am going to find an answer to it all I get denied, like with these test results:
    Deamidated Gliadin IgA <20 Units 3
    Deamidated Gliadin IgG <20 Units 6
    Interpretation Guidelines for Gliadin IgA/IgG
    Negative 30 Units

    Semi-quantitative results were obtained with INOVA Quanta Lite (TM) Deamidated
    Gliadin Peptide IgA/IgG. The magnitude of the values cannot be correlated to
    an
    endpoint titer.
    TRANSGLUTAMINASE IGA <4 U/mL 1
    Tissue Transglutaminase Interpretation:
    Negative 10 U/mL
    IgA 70 – 400 mg/dL 123
    These are from my last appointment with the GI specialist and he said “you have IBS, take this medicine when you get stomach cramps” so I did and they didn’t work. They did scope me but only looked at my stomach and the top of my large intestine. I did show some redness at the top of my stomach but again, he said IBS. It’s been about a year and I’m still always sick, always in the bathroom, always in pain, and always battling with my skin irritation. So I’m going to try a gluten free diet for 3 weeks and see how it goes despite the negative test results I got for my celiac test. I am open to any comments or suggests for my situation…. Thank you

    1. Jess Post author

      Hi Sarah,
      I am sorry to hear that you are feeling so lousy (I had similar problems for a long time prior to diagnosis and was also told that I had IBS for ages).
      A few questions for you about your current situation…when you had the celiac antibody testing done were you eating a lot of gluten? If you were already GF (or gluten light) when the blood tests were done, they could be falsely negative. Also, there are some with celiac disease who will have normal blood antibody tests but abnormal small bowel biopsies done. Unless you’ve had a small bowel biopsy, done correctly by a specialist, including 4-6 tissue samples, one of which includes the duodenal bulb, there is no way to say whether or not you have celiac disease.
      That being said, there is increasing recognition of a problem called non celiac gluten sensitivity (NCGS) in which people get very ill from eating gluten (can have IBS symptoms, headaches, joint pains, foggy thinking, etc) but they do not have the classic villous blunting of celiac disease seen on biopsy. Some patients with NCGS have elevated TTG IgA antibodies but others do not. If you have celiac disease properly ruled out, and you find that gluten is making you ill, then NCGS may be your problem…either way, the treatment is to go GF for life. The only difference is that with NCGS it is unknown if there are any long term complications from continuing to eat gluten (with celiac we know that continued ingestion of gluten increases our risks of problems like lymphoma, osteoporosis, development of other autoimmune conditions, etc.)
      Good luck and feel free to ask questions at any time. My path to diagnosis was anything but straightforward.
      Jess

  12. Andy

    Similar story here. 28 yo M. Finicky stomach all my life. Mouth sores every few months. Hard core runner and soccer player in highschool. Couldn’t stand to eat after games. Would have immediate stomach pains. Diagnosed last year (my third year of med school) with hypothyroidism. Was pretty constipated and having lots of anxiety the 6 months leading to that diagnosis. Started taking levothyroxine. After two months began having unrelenting abdominal pain cramping and loose stools. Being worked up for NCGS presently. I had a gluten allergy IgG that was positive. Scheduled to see GI next month. I was wondering what your experience with hypothyroidism and gluten was? Some of the thyroid symptoms seem to confound the gluten symptoms. At least it’s difficult for me to differentiate them. Also, how well do you/did you handle coffee? It is a large part of medical school and one that I am not tolerating so well as of late. Thanks for your posts. Nice to not be alone.

    1. Jess Post author

      Hi Andy, It is good to hear from you. I was away on vacation so I am just getting back to my page now. I graduated from medical school in 2003 and looking back I believe that the chronic stress, sleep deprivation, etc. played a role in the emergence of all of my autoimmune issues, which now include Hashimoto’s, celiac, and mast cell activation syndrome. In my reading and discussions with others it seems that a lot of the NCGS folks seem to actually have more severe symptoms (especially extra intestinal ones) than those of us with celiac.
      My thyroid symptoms have been rather well controlled since I was 26 and started on levothyroxine. I’ve had it monitored really closely since I’ve had 6 pregnancies in the last 9 years (4 live births and 2 miscarriages). I definitely have had a low baseline dose of levi, though, since going GF in 2010. Prior to that my normal dose was around 150 mcg/day and now I am at 112.5 mcg/day.
      I’ve been an avid coffee drinker since high school but I was unable to tolerate when my celiac/GI issues came to a head and then in 2010 and in the immediate period after going GF. I was able to drink it again at about the 3-4 month GF mark, which is when I believe that my small bowel really started to heal. I am now a proud 4 cup/day drinker with absolutely no issues. All of the info on the Internet about coffee “cross-reacting” with gluten is rubbish, just as an FYI.
      There seem to be many of us medical people with celiac/NCGS issues and I keep in touch with many via email. If you’d ever like to get in touch you can send me a message at thepatientceliac@gmail.com. I am also very easy to find on Facebook and celiac.com (but I don’t check my messages as often on those sites). The important thing to know is that you are not alone with any of this. I remind myself on a regular basis that I am “lucky” to know that gluten was the root cause of my poor health and to avoid it. That is why I am trying to spread the word.
      Good luck with both medical school and your health journey, and remember that your experiences as a patient should help to make you a better doctor!
      Jess

  13. Ross

    Hi Jess, I must say I am very impressed with how much you’ve accomplished under the circumstances; your incredible persevailance (forgive my spelling, I’m living in Mexico for 11 years now and seem to have lost much of my English spelling skills). I stumbled across your blog a few days ago looking for a possible link between Alcohol and Apple Cider, believing for years that I had a strange allergy to both, although the reactions are occasional and widely spaced over the past 27 years, reactions that seem like the combination of a full body cramp, migraine and imminent heart attack. I don’t remember if I had breathing problems, nor do I remember if my BP dropped drastically, although I do remember that I must lay down… I believe I’ve had this reaction in Mexico, or I wouldn’t continue considering it. My most memorable attack was at an anniversary party at the Spanish Institute in NYC after having drunk a lot of Piña Colada… The moment after the attack passed, so did the sense that I had ingested alcohol. The first time I had the attack was after drinking really good apple cider in New Jersey. Over the years I imagined that the apple cider attacks were because the apple cider may have fermented a little, although it didn’t taste that way.

    I really appreciate how you write. I wish I could write so clearly.

    Let me tell you a little about me. I grew up in New Jersey, studied in an alternative college in Amherst, Mass, spent my last 7 “American” years in New York City and now live in Mexico for 11 years. My father was an Opthalmologist for 1 year before becoming ill with Liver Cancer that spread rapidly from his colon and died less than a year after “becoming” ill. I was 4.5-years-old. It turns out that he was diagnosed with Familial Adenomatous Polyposis that my younger sister and I inherited. At the age of 13 I was supposedly the youngest person to have their colon removed at Memorial Sloan Kettering Cancer Center in Manhattan (the same place where my father died). Supposedly removing the colon removes the problem. Of my paternal grandmother who died when my father was a boy (2 sons and 6 grandchildren), both her sons inherited FAP (my uncle was also type 1 diabetic), her oldest grandaughter (my cousin) died of a brain tumor at the age of 16 (I must have been 9-years-old), her oldest grandson (my cousin) also developed FAP/Gardners Syndrome along with a hormone problem (it has a very familiar name in endocrinology that slips my mind at the moment) that caused him to become very tall as a boy, my younger sister (who also developed thyroid cancer at the age of 26) and I were diagnosed with FAP/Gardners, only my older sister was born without the gene (7/8 or 88% inheritance rate, unlike the supposed 50/50% claimed by the experts, who also claimed 18-years-ago that Thyroid Carcinoma didn’t fall under Gardners or FAP; they say that they are one in the same, I believe Gardners is an umbrella syndrome with FAP falling below it. But, I’m not a scientist or doctor…)

    What does all of this have to do with you or Celiac or Hystamines?

    As a child I was diagnosed asthmatic. However, somehow somewhere my mother was told I outgrew it after the age of 5. I was very active as a child and loved the outdoors and sports. However, I got winded very easily. So, I didn’t play basketball… My nose was always clogged. I supposedly was allergic to cats (grew up with them; my favorite was named “Dusty”). Long-grassy fields were paradises, but caused horrible bouts of sneezing and itchy eyes… I’ve had horrible reactions to long-neck clams…

    In Mexico I’ve had some horrible reactions to pine tree pollen that led to my tongue swelling, to bamboo dust and three allergic reactions to Salt Peter from water damage to the roof of the house where my wife and I live over the past year…

    Over the years I’ve had slight asthmatic attacks where I had difficulty breathing, and talking would cause coughing that did not produce phlemn (I would have relaxed some if I could have expectorated something) but doctors have dismissed them as seasonal allergies.

    I’m jumping all over the place. 15 months before leaving for Mexico in 2003, I had my rectum removed and replaced with a J-Pouch. So, I wouldn’t know if what I eat causes diarhea, since not having a colon nor a true rectum creates a permanent state of diarhea…

    I’ve never had a sweet tooth (one cavity in my lifetime). However, one of my passions over the past 25 years is international cuisine. Not long after meeting my wife 11 years ago, I found myself with a great dilemma: how to make a life with her without money nor the right to work as an “American” in Mexico, as she wouldn’t be able to enter the U.S. legally. The magical response to the dilemma was baked goods; gourmet pizza, banana bread, coffee cakes, carrot cake, apple cake… The wonderful thing about the food industry (especially the baking industry) is that if you have no money for more than your ingredients, you’ll always have some form of bread and, of course, eggs. The pizza business didn’t work because we couldn’t sell gourmet pizza at such low prices. The cake/breads business didn’t really work for the same reason, although we became famous for such high quality. I eventually changed the breads/cakes to gourmet cupcakes filled (and topped) with 7 cream cheese mixtures and 5 jams… And then I became ill working 365 days per year 18 hour days… Diet, stress, exhaustion, fear, struggling for making a life with Margarita against all odds…

    In 2006 I was diagnosed with gastritis, high blood pressure, high cholesterol, two ulcers in my stomach, hiatal hernia, H-Pylori, gallstones (and what I didn’t notice from the Upper Endoscopy–Duodonitis). The GastroEnterologist suggested removal of the gallbladder. But we didn’t have money for that… The internist gave me a diet for starving me to death and leeching any savings we may have had, since I could basically only eat salmon and chicken breast… I got very ill again 8 months later and on the 23-year-anniversary of my father’s death (he died on New Years Eve/Day 1974) I created my first New Years resolution in my life (I grew up without celebrating New Years); to stop seeing doctors and to stop taking medications. I decided to investigate healthier forms of eating or natural ways of healing… I succeeded in lowering my BP and my Cholesterol levels for at least 6 years and ridding the gastritis.

    When Margarita and I began the baking business and married in June/July 2003, I weighed 72kgs/162pounds. Four years later I had gained at least 28kgs/63 pounds. In 2007 we left the baking industry for travelling around the country with our coffee bar (My father-in-law is a coffee farmer in the mountains of Veracruz); a client from Washington state had asked me why we didn’t have an established bakery/café and why we don’t sell/export my father-in-law’s coffee. And after explaining the situation over a two week period, the client lent us a hefty amount of money for helping us improve the situation… And I was freed from being immersed in baked goods. Clients repeatedly ask why we don’t compliment the coffee with baked goods and I respond that I can’t sell mediocre baked products to a client and must bake it myself, which is the truth. However, a greater truth is that I can’t live/work with baked goods below my nose…

    Over the seven years with the travellin coffee bar, our economy has increased greatly. And with the incredible rise in violence in Mexico, we removed half of our business travelling for protecting ourselves (especially my nerves), which has given us a lot of free time on our hands (8 months per year). We established home in Guadalajara with a great park for walking/running and an incredible canyon for very steep hiking an hour to the bottom and a little more to the top…

    I don’t eat street food, since I’ve gotten horribly ill from that opportunity… I don’t eat in restaurants, since I generally don’t believe we have that economic luxury. But, moreso because outside of New York City, it is way to risky that I will feel that I can cook the same dish so much better and for so much less. As I said, my greatest passion is international cuisine. In my kitchen, for so little cost, I cook Chinese, Thai, Vietnamese, Indian, Arabic, Caucasus/central-west Asian, Italian, North Africa and Pan-Latin American cuisine… I don’t shop in supermarkets such as Walmart if I don’t have to, buying in (Centrales de Abastos) giant farmers market/depots (I’ve never known what they are called in English, although I know there was one north of NYC, although I would never have had the nerve to go, and because I didn’t have a car) where the fruit and vegetables are fresher, higher quality and less expensive.

    Where am I going with this? Hiking in the canyon for 2 months 2 hours per day, 5 days per week… or running 4 days per week, between 32 and 40 minutes (4-5kms/ 2.5-3.1miles) or run-walking or semi-speed walking for 50-120 minutes 6 days per week for 2 years now and I have dropped maximally 10kgs/22.5 pounds for a moment, basically maintaining a weight of between 92-95 kgs/207-214 pounds. I don’t eat junk food and very little baked goods/sweets/pastries… I don’t drink sodas or commercial juices or flavored drinks… I don’t buy prepared foods, nor fast foods… Until just before beginning the baking business with Margarta, I could drop all the weight I may have gained in a month by creating a 3 mile running routine. It always worked. And I believed in carb loading for running better. In Brooklyn, I lived across the street from Prospect Park and would prepare what I called a super coffee (triple cappuccino/Puerto Rican style café con leche) and drink the big glass just before running… When I exercised, I believed I could eat as much as I wished and anything I wished.

    None of this works for me here in Mexico.

    The long story gets longer and, of course I feel a bit ashamed putting this upon you and whoever else may find themselves reading this. But, the problem is that there is absolutely no one here who has the time or the knowledge or the interest or the education level or… Don’t misunderstand me, I know you don’t have the time, and I know that most of this is just one of those fantasies of “one-in-a-million” chance (like my having met Margarita or that client appearing “out-of-the-blue” in The Lakes of Xalapa, Veracruz with a big check or my awakening New Years morning in Catemaco, Veracruz 2007 with the magical idea of “healing myself”… I had never been interested in my health, nor in nutrition, nor in healthful living, nor… And, of course, “talking to oneself” isn’t all such a bad thing to do… Writing that talking-to-myself helps organize thoughts and helps plan for the future and helps organize various realities.

    In October 2012, I was running 3.1 miles in 26 minutes 5 days per week (walk-running would come later). My diet was wonderful (kale, cauliflower, bok choy, spinach, red cabbage, fresh ginger, fresh garlic, fresh turmeric, papaya, apples, guavas, chicken, fish, natural yogurt, lamb, beef liver, beef and all the rest of the typical vegetables etc). In November I found myself becoming gradually fatigued until I couldn’t reach 22 minutes before I developed horrible burning in my calves… And then I couldn’t reach 7 minutes without that burning reaching my knees etc… It felt as if I were running with lead in my shoes… At all other times I was feeling a pain near my stomach and felt that something was slipping out from below my right rib cage and imagined that my gallbladder was inflamed again… So, I thought something could be seriously wrong. I read that stomach ulcers don’t cause pain and I wasn’t experiencing gastritis with it’s distention.

    So, I decided to visit a GastroEnterologist for the first time in 6 years. I told him my symptoms and shared with him my FAP/Gardners medical/family history and was surprised that he had met my ultimate surgeon. I didn’t remember the surgeon’s name, but said that he supposedly was #1 in the world in J-Pouch surgeries and the doctor asked me if he was Dr. Gorstein and said that he had met my surgeon in a conference in Chicago. The gastroEnterologist mentioned that he had been the director of the GastroEnterologist Society of Mexico and that he was very familiar with FAP… However, with all that I told him, he said that he didn’t believe it was necessary to give me an UpperEndoscopy, nor an abdominal ultrasound. He focussed upon my high BP and suggested I visit a Cardiologist and that maybe the pain was hypertension in the Kidney that could lead to a heart attack or a stroke and prescribed my Vitamin B12 injections… The one good thing that came out of the visit was his statement that since the Ileal part of the small intestine was converted into a J-Pouch, it no longer served for absorbing the Vitamin Bs, making all J-Pouchers vitamin B deficient and fatigued… I would learn months later that he was incorrect. I left his office concerned and perplexed but now thinking about malabsorption problems and the lack of the Ileum, Colon and Rectum… I made an appointment with a cardiologist and with a laboratory/clinic for an ultrasound and blood tests… However, between the GastroEnterologist visit and the Laboratory, I investigated connections between vitamin/mineral deficiencies and high BP and/or muscle fatigue etc., and came across Vitamin D, potassium, connections between various vitamins and the B Vitamins etc… The ultrasound revealed that I had rid myself of the gallstones and that my liver, gallbladder, kidneys, pancreas and spleen were normal along with their corresponding channels… My B12 was over the roof (from just one injection), my potassium normal and my D was at 19… If my potassium levels were high-normal and my sodium, glucose and cholesterol were low-normal, then why was my BP high?

    (My first 33 years were spent at sea level; my last 11 have been at an altitude of 3,937 feet and 9,186 feet; Guadalajara is around 4,600 feet above sea level).

    So, I assumed that the issue with bone pain, skeletal muscle fatigue/pain and high BP was due to the vitamin D deficiency. Since one cannot find adequate suppliments here in Mexico (there are pharmacies and every corner by the way) and what you find is 20 times more expensive than in the U.S. (GNC Mexico sells Vitamin D4 400uis 100 capsules for USD $10 while GNC U.S. sells Vitamin D3 5000ius 150 capsules for USD $5 if I am correct). A friend of mine sent me 150 capsules of D3 10,000ius for I believe $12USD. The equivalent bought here would have cost me 20 times more or $240USD…

    It’s a year later…

    In my life in the U.S. I have never gotten the flu or strepthroat and the only time I had a fever was from a dirty I.V. needle after my J-Pouch surgery at Mount Sinai in NYC November 2001. They also discharged me with that fever… I guess the Medical Insurance Companies have more power/leaverage than does Federal Law…

    Over the past year I have developed colds/flu 3 times and very drawn out; none of the typical 3-4 day discomfort-inconvenience-nuisance and over the past 18 months 3 periods of extended allergic reactions due to mold spores or Salt Peter from water damage…

    Today I ran 20 minutes of the 41.5 5km/3.1 mile run-walk… 8 months of the past 12 walking or run-walking 6 days/week and fatigue and no weight loss.

    What makes things new and why I stumbled across you is that for the first time in my 12 year J-Pouch life, I sleep the night through without running to the bathroom at least two times per night for almost 2 months now… removing the Cortisol issue from the table and bringing up the question “if I sleep 7-hours per night and don’t go to sleep late, nor awaken late in the morning, Why am I fatigued all day long?” It isn’t an issue of the adrenal glands… Plus, I found myself joking around about Alzheimers because I suddenly found myself with memory problems and a very foggy mind since December. I’m an incredible driver; I pride upon that. I don’t like driving at night, since I feel my night vision has decreased greatly, especially rainy nights or when the roads are damp… My vision has decreased greatly over the past year… Although supposedly I don’t have vision problems…

    I decided to look up Hypothyroidism a year after putting the idea on the shelf since I had spent much of my life with sleep disturbances (insomnia until the age of 30 and J-pouch from 32-44) and replacing it with the idea of Cortisol Dumping in the Blood Stream that causes midsection weight-gain, fatigue, high blood pressure, repeated eating during the day… What struck me now is the connection between Hypothyroidism, carpal tunnel/rheumatism/peripheral neuropathy symptoms and memory problems… I’ve had a problem with my right shoulder to my finger tips for years now. I’ve always blamed that as work-related damage (repetative-use) when we were in the baking business; carrying 50 pound boxes of bananas or apples or other things on my right shoulder and going from hot and cold–baking in the oven for hours to placing the finished cupcakes in large freezers… But, the problem became worse this past January, without having used the right arm that much…

    So, I visited with an Endocrinologist who only focussed upon my BP and my weight and said that if my BP doesn’t drop with his diet and my exercise over the next month, he would prescribe medication. My BP today was between 126/92 at 2pm, 138/88 after drinking a cup of coffee at 5pm and 144/105 at 8pm after writing all of this. Margarita asked me why my face is flushed and I said it must be due to writing so much… He sent me for blood tests, urine tests and a thyroid ultrasound, but for 3 days before the following appointment in one month, since it is clear that he believes the issue is BP and being overweight. I am 5’6 and very stocky/muscular, big-boned; compare my wrist size or head size or foot size to other men my height… When I was around the puberty age, I was told by the school nurses that I weight 5 pounds over the ideal weight for my age. But I was a very skinny child. I didn’t start gaining weight until I started driving at the age of 17 and stopped travelling all over the world on my bike or by foot… My mother struggled for years after my father’s death. We often didn’t have adequate food in the pantry or she wasn’t around since she went to community college, college and grad school right after my father’s death… She often sent me to school with rancid chicken roll sandwhiches on moldy bread. I have a very sensative sense of taste and smell THANK GOD. But touch or smell, I know when food is turning… when many others don’t know it… Thanks Mom! I couldn’t eat that. And often had to pass the school day without eating anything… In 7th grade, the kids called me “poor boy”… In 8th grade I had my colon removed and had to return to the hospital to have scar tissue removed from strangling my small intestine (2 months in the hospital; the second time fed with an I.V. for 9 days –not even water passing my lips–, watching the fluids leave my stomach through the drainage tube after each hunger cramp, their color changes… yellow… green…)

    I’ve always joked that I could be dying from anorexia and they would accuse me of being over-weight…

    So, I ignored the endocrinologist’s diet and immediately made an appointment with the Clinic/lab for the following morning. I was told that not even water could pass my lips for 8 hours before the tests. J-Pouchers are constantly on the edge of dehydration or we live in a constant state of dehydration…

    I imagine that the lack of water for at least 10 hours before the tests negatively affect the results, which means I should retake them…

    In any case, my HDL Cholesterol was surpisingly low and my LDL was almost high… My glucose was surprisingly high for me at 117. If I’m correct, my Triglycerides were the same as a year earlier 330+/-

    I didn’t see anything strange with my T3, T4 and the rest… The doctor who did the ultrasound said that all of my glands and my neck was normal, although there were comments written on the plates, that mean who knows what…

    Aside from the cholesterol and glucose levels, what truly concerns me and why the endocrinologist was dead wrong for not wanting to see the results in the following days is this:

    Basophilia and Platelet Anisocytosis… High levels of Basophyl white blood cells and varying Platelet sizes… So, I’ve been searching the internet for connections and possibly why I stumbled across you before mentioning gluten or Celiac or…

    Basophilia– problems with hystimine in the blood? Swollen Spleen or Hyposplenism or Leukemia (since with FAP/Gardners anything is possible regarding cancer); which is why the doctor should have seen the results. Basophilia could be connected with Diabetes, Thyroid disease, hyposplenism, rheumatism and cancers other than Leukemia… Varying platelet sizes? I haven’t found that… But, what I find interesting is the connection between Celiac and Hyposplenism… And what I find interesting is the connection between hyposplenism and illness, since I had never gotten this type of ill before 2012… Over the past year I’ve even worried about Lymphoma, since I occasionally found balls of pain around my armpit during times of flu-like symptoms…

    In reading Chris Kressers blog, returning to read about hypothyroidism and celiac, I became intrigued with impressive weightloss by the removal of carbohydrates from the diet. I was amazed that I had never stumbled across the idea that carbohydrates could be counter-productive for the creation of energy and weightloss…

    It’s been a week since I’ve removed wheat, rice, corn and sugarcane products from my diet. And visit your blog and that of Chris Kresser daily amidst my continued research on what the hell could be the issue or the risk or the possibilities, good and bad…

    If you reached this point, I applaud you and thank you for your consideration. If not, I’m not surprised. Afterall, most of personal human existence is spent alone, thinking and possibly talking to oneself. And maybe there isn’t a true answer or solution. Afterall, why would one be born with an early self-destruct button within? if we weren’t supposed to die this way, if we were supposed to understand something other than we must die young? I have yet to “meet” a FAPer/Gardners Syndrome survivor of preventative surgeries, nor a study of us, who live beyond the age of 60… My lifeline says, 95-years…

    At this point in my medical experience, it may be more helpful to consult with a true Astrologer than with a certified medical specialist. Would you believe that there is something in my astrological chart that says, “due to this combination, one or both of your parents will die during your childhood…” But nothing and no one says that I carry this “disease” or that I will die young…

    Ross

    1. Jess Post author

      Hi Ross,
      Thank you for the gift of your life story.
      I have been on a bit of a hiatus from this page (trying to minimize my time on the computer since I’m married to it at work) so I am sorry for the delay in moderating and posting it.
      I hope that we can keep in touch through here and am honored that you felt comfortable sharing everything like you did!
      The blessing of all of this is that you will ultimately help countless others who are trying to figure out their health problems and issues.
      All the best to you!
      Jess

  14. Ross

    Wow Jess! That’s a very nice response! And I was so concerned I had written too much, especially focussing on something not totally Celiac or Histamine related. Unfortunately, in the time between today and when I wrote my long comment, my younger sister Beth (I mentioned her in what I wrote you) was diagnosed with cancer of the rectum (of the four of us — my two cousins, Beth and I), she was the only one who hadn’t had her rectum relined or replaced with the J-Pouch. You may be aware of the J-Pouch, since it is very prevalent as a recourse for those with Crohns, IBD and Colitis… So, my focus has been turned away from my own research into diet and concern for her; and what all this means for me (psychologically or spiritually). Fortunately, Beth encountered a good surgeon who just so happens to have had our original surgeon of 30 years ago as her mentor, which is very special for Beth. What’s equally nice is that her surgeon is a woman. Oh, and Beth will be having a her rectum replaced with a J-Pouch. She’s also excited that Dr. Mammoud told her that she would be able to run 30 days post-op. I find that surprising, considering how I felt after my J-Pouch surgery (and running with an ileostomy bag). I don’t know if I told you Beth is a marathoner. Who knows? It must have something to do with Dr. Mammoud’s confidence in Beth’s physical health or strength being so athletic. My mother will be visiting us for 5 days beginning Saturday. She returns to New York on the 27th and Beth’s surgery is the 28th. So, I’ll be away from the internet for those five days. There is so much I haven’t read on your blog and that I’m sure will continue inspiring me.

    Thanks again for your response.

    Ross

  15. Emily

    Thank you for posting this personal story. I have just discovered that I have the symptoms of celiac after 15 years, and I was feeling quite bad about not having figured out my problem earlier. It is a relief to know that this happens to others. Thank you for sharing.

    1. Jess Post author

      Hi Emily,
      You’re welcome. You are definitely not alone, and I felt really stupid at first for not recognizing the symptoms in myself, especially since I had learned about it during med school. With time I’ve become easier on myself. The good news is that both if us are on the path to healing and are part of the small minority of celiacs who actually are diagnosed and GF. There is a wonderful celiac support community online too.
      I wish you the best. Please feel free to comment or ask questions at any time.
      Jess

  16. Laura

    Hi Jess! Thank you so much for all you are doing with this site. It’s so comforting to know that there are others out there that are going through the same thing.
    I have a quick question for you :) I am wondering how you knew that you had reactions to soy and sulfites specifically? And after going gluten free, did your stomach issues clear up or do you still sometimes have stomach troubles? I was diagnosed with celiac by the blood test back in January (it runs in the family so my doctor didn’t think the biopsy was necessary) and have been extremely strict with being gluten free, yet still have stomach issues from time to time, which is extremely frustrating after being so vigilant. My doctor thinks it could be from hidden gluten, but I’m not sure. I am thinking maybe it has to do with another food intolerance. Any insight from your personal experiences would be greatly appreciated :)

    1. Jess Post author

      Hi Laura,
      It’s good to hear from you.
      I was diagnosed in 2010 and I felt better after going GF right away.
      I had a lot of episodes of cross contamination during the 1st year as I got the hang of the diet and I noticed a distinct pattern of symptoms after getting “glutened.” Then I found myself developing headaches and nausea, along with other similar symptoms similar to those I experience with a glutening, even when I was eating foods that were definitely GF. So I did a brief food journal and realized that I was having reactions to foods that contained soy protein and soy flour. I removed soy from my diet and the headaches and nausea went away.
      The sulfite issue did not pop up until about 2 years after being diagnosed with celiac and going GF. I started to develop wheezing and heart palpitations out of the blue about 4-6 weeks after having my 4th baby in 2012. I started to track my exercise and diet on an app called My Fitness Pal to lose my pregnancy weight, and fortunately, in the process of doing so, kept a really detailed food journal. It become clear that sulfites were the culprit. I removed sulfites from my diet and all of my asthma symptoms, heart palpitations, etc. went away.
      What I now know is that I had developed the additional food intolerances due to an immune system problem called mast cell activation syndrome (MCAS), which I have in addition to celiac disease. I wrote all about it on this blog in January 2014. Since starting on medical treatment I have been able to liberalize my diet a bit. I still need to avoid foods and drinks with high sulfite loads, but no longer react to fresh berries, seafood, avocados chocolate, etc. Thankfully. There are some decently good sulfite free wines out there too.
      It is unclear to me if the MCAS was a result of living for decades with undiagnosed celiac disease, or if it’ just a coincidence. I think that it took a really long time for my bowel to heal after going GF, and I suspect that the improvement in my other food intolerances/MCAS may in part be to the fact that I’m much better at avoiding cross-contamination now than I was in the beginning. I’ve also been on a pretty strong probiotic since 2012 and I think that this has played a large role in my bowel healing too.
      I hope that you find answers and I really appreciate that you took the time to write to me.
      Jess

        1. Laura

          Thank you so much for your response :) I really appreciate it. I am going to keep a food journal and I just went out and bought a probiotic, so I’m hoping that helps.
          Thanks again!

  17. Nicole

    Hi Jess,
    Thank you so much for your site. I thought that I should share my story as a Non Celiac Gluten Intolerance sufferer with you all
    I stumbled across your site after a visit to the doctor where my doctor told me that he thought I might have Celiac Disease. I had never even heard of it! I had heard of people going “Gluten Free” but thought that it was another Hollywood Fad!
    I was diagnosed Lactose intolerant in my late teens and have had IBS symptoms since my mid twenties and I am now 40. Earlier this year the symptoms got worse, I kept getting cramping pains in my stomach and was spending way too much time in the bathroom, I couldn’t recall the last time I had a normal bowel movement. I was also suffering from headaches, nausea, I was moody, sad, forgetful and I was tired all the time.
    Well I have had a blood test and that was negative, my doctor referred me to a specialist for an endoscopy biopsy and that was negative. My doctor has told me that I am Gluten Intolerant and I must admit after my biopsy I have gone gluten free and feel amazing! A couple of days after eliminating Gluten from my diet my headaches were gone, I had no nausea, no cramps and for the first time in a long time (well I cant remember when) I had normal bowel movements! I used to be so tired and it was nothing for me to be crawling into bed at 7.30 at night and I would wake up exhausted! Now I can stay awake easily until 10.30pm and be ready to go at 6.30 the next morning! I have more energy, I am happy and feel like the fog has lifted on my brain! I have so far managed to only slip up once, when I with accidently added some seasoning that contained Gluten to my dinner. This saw a return of my symptoms and me rushing to the bathroom, this also had me retiring to bed early that night with a headache!
    I must admit that I prefer my life with Gluten out of it :-)

    1. Jess Post author

      Hi Nicole,
      Thanks for sharing your story, Like you, I get very ill right away from gluten, so it’s very motivating to avoid it at all costs. The research about non-celiac gluten sensitivity has skyrocketed over the last few years and I do my best to write about it on my page from time to time. I am amazed how sick so many of us can get from gluten, both from celiac disease and NCGS.
      I hope you continue to get well and really appreciate all that you shared.
      Jess

  18. nick

    Hi…just a quick query…since you are a doctor you might have some insight. I haven’t been diagnosed with celiac…but I have been diagnosed with microscopic lymphocytic colitis and wasn’t able to control my symptoms other than with a very strict gluten free diet…I don’t seem to have any other intolerances. I understand there is some connection between celiac and type 1 diabetes. My wife is type 1 diabetic and now both of my children have also become type 1 diabetic. I understand that this is a highly unusual rate of inherited diabetes. I am wondering I might actually have celiac and whether my wife and I might have created a genetic “perfect storm” for our children? What do you think?
    Nick

    1. Jess Post author

      Hi Nick,
      If you are at all worried that your wife and daughters may have celiac disease, since they are at higher risk than normal due to having DM Type 1, then I’d recommend that they all get tested for celiac disease.
      If you are already strictly GF, the only way that you would get accurate celiac testing results would be by undergoing a “gluten challenge” and then having your testing done.
      I hope this helps. As always, my best piece of advice is for you to discuss with your own doctor.
      Jess

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