gluten challenge

Hope for a Less Challenging “Gluten Challenge”

The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing.  If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed.

Since starting this page I’ve encountered many people who have decided that they’d like to be tested for celiac disease after starting on the gluten-free diet.  Per the celiac disease experts, a “gluten challenge” must be performed in these cases to assist in the diagnosis of celiac disease. A gluten challenge requires eating foods containing gluten for a prescribed period of time prior to an endoscopy and/or blood testing for celiac disease. The length of time and amount of gluten that need to be consumed for a gluten challenge vary from source to source. Here are some examples of different recommendations for a gluten challenge (current as of July 5, 2014):

University of Chicago Celiac Disease Center: “For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.”

Celiac Disease Center at Columbia University: “In individuals who are willing to further pursue the question of whether they have celiac disease, we will advise a gluten challenge. This consists of ingesting at least 4 slices of bread a day for one to three months followed by an endoscopy and biopsy. There is no evidence that following antibody tests is beneficial in establishing a diagnosis of celiac disease because these tests are not sensitive in this setting.”

Celiac Disease Center at Beth Israel Deaconess Medical Center: “Gluten is reintroduced into the diet and after a period of time (ideally 6 to 8 weeks if the challenge can be tolerated for that long) blood tests and an intestinal biopsy are performed. If the gluten challenge is not tolerable for the full 8-week period blood tests and biopsy can be performed sooner but this can lead to a false negative result.”

In addition, Dr. Leffler and colleagues published a paper in 2013 showing that the majority of patients with celiac disease will test positive after eating >3g gluten/day for 2 weeks. A typical piece of wheat bread contains about 5g of gluten.

Despite all of the confusion, there is hope on the horizon for a shorter gluten challenge in the future.  Researchers at the Walter and Eliza Hall Institute in Australia have been developing a blood test that measures gluten-reactive T cells, immune cells that increase in response to gluten in those with celiac disease, via cytokine release assays.  In a pilot study published earlier this year, patients with celiac disease had a significant jump in blood levels of gluten-responsive T cells, compared to controls, after only 3 days of consuming gluten. Per Dr. Jason Tye-Din, one of the researchers working on this test, “We hope that larger studies can validate these findings and establish its role in the diagnosis of celiac disease.” For the sake of my gluten-light kids, and everyone else who is in a similar situation in regards to diagnosis, I hope he is right.

A press release regarding the study can be found here.

Out of curiosity, have any of you been diagnosed with celiac after doing a gluten challenge? If so, do you remember how much gluten you had to eat and for how long prior to testing?

Full reference:

Ontiveros NTye-Din JAHardy MYAnderson RP. Ex-vivo whole blood secretion of interferon (IFN)-γ and IFN-γ-inducible protein-10 measured by enzyme-linked immunosorbent assay are as sensitive as IFN-γ enzyme-linked immunospot for the detection of gluten-reactive T cells in human leucocyte antigen (HLA)-DQ2·5(+) -associated coeliac disease. Clin Exp Immunol. 2014 Feb;175(2):305-15.

 

58 thoughts on “Hope for a Less Challenging “Gluten Challenge”

  1. Vik

    Hi Jess, I was eating more gluten-light, but yes was still eating it when I got the blood test with the high antibodies. So I didn’t have to do a gluten challenge. The endoscopy was not scheduled until about 6 weeks later, just b/c they were booked up. The docs said, do NOT stop eating gluten, and I certainly took them at their word. I’ve already described my “I will now eat everything with gluten that I’ll never eat again” pre-endoscopy binge. Since I don’t get dramatic outward glutening symptoms, the eating aspect for this period was pretty enjoyable—but not so much the part about freaking out about celiac, in general.

    1. Jess Post author

      Hi Vik,
      Thanks for sharing your experience. And yes, I know we’ve talked about our pre-diagnosis binges before, I believe that mine was the worst in the history of celiac disease (cheesy bread and thin mint cookies).
      Anyway, it’s great that you received the advice to continue to eat gluten for your testing (which sadly does not always seem to be the case).
      Jess

      1. Sherri

        My daughter has recently had a biopsy confirming celiac. Her symptoms are only bloating, excessive weight gain and forehead acne. No diarrhea, constipation or pain. No headaches. She is 5’8″ tall and 150 pounds. Nothing like the textbook cases.
        Now our whole family needs to be tested. I have been gluten free more or less for 6 months only eating gluten occasionally. The doctor at the Celiac Center of Philadelphia is telling me to eat two bread products a day for only 4 weeks before my blood test. This seems much lower than anything else I’ve seen recommended. Why do they say two bread products for 4 weeks and others say 3-4 for at least 12 weeks? I already feel fatter and sluggish after only 3 days of gluten. My brain tells me to just suffer for 12 weeks. 4 weeks seems like an automatic negative. Should I trust the experts at CHOP when they say 4 weeks? Any thoughts?

        1. Jess Post author

          Hi Sherri,
          I think that different celiac centers give different recommendations because there are no clear universal guidelines for this.

          If I had to undergo a gluten challenge (the thought of which makes me shudder because I would be so ill), I would probably eat 1/2 slice of bread everyday for about 8 weeks before blood tests, but only for 2 weeks if I was going to have a biopsy. Based on all I have read, I would feel comfortable that my tests would be positive with this intake and duration.

          I hope this helps. I wish you the best!

          Jess

    1. Jess Post author

      Hi Esther,
      You bring up a great idea, but as far as I know the rectal challenge is not available in the U.S., outside of for research purposes. Where do you live? Did you have this done?
      Jess

  2. Amy

    First, I had the blood test when I was still consuming gluten on a regular basis. I was very ill at the time and after the blood test came back positive I stopped eating gluten. I instantly felt much better.
    Then, I was referred to a specialist and my appointment was approx. 4-5 months later. They wanted me to consume gluten for the entire time! I did not want to b/c I was so sick I could hardly do my job at work and was getting almost suicidal (yeah, my worst symptoms were psychological, not physical). So, I did not eat gluten and refused the endoscopy. I did not see the point in my case. I went for a consultation with the specialist and he could not give me a good enough reason for the endoscopy. He sent me for another blood test and my levels were pretty much normal. So, this how I got my diagnosis.
    One mote piece of info: I’m pretty sure I had endoscopy as a toddler b/c my first diagnosis happened in my home country of Hungary in the seventies but at that time the dr’s thougt that my villi was destroyed as a side effect of a medication (I was less that two at the time and I almost died due to Celiac). I was gluten free after for approx. 1 year and got healthy and when I got into regular bread and had no reaction, the dr suggested my mom that she starts introducing gluten nack and watch for reaction. I showed no signs so I grew up eating everything, until I started having issues in my late thirties.
    In retrospect, the few consistent symptoms I had were low iron & growing up I had constipation!
    This is my story in a nutshell. Not a typical one.

    1. Jess Post author

      Hi Amy,
      Thanks so much for sharing your experience. I agree that 4 to 5 months is a horribly long time to have to be on gluten and I would never have been able to tolerate that long of a gluten challenge either. I think back to how ill I got prior to being diagnosed and I would never be able to do that again (maybe for 3 days if I really had to, but not for 4 to 5 months!)
      It is so interesting that you had the experience of being diagnosed as a toddler and then “outgrowing” celiac disease…only to find out years later that you had it all along. I have heard that this happened to many who were diagnosed decades ago, but you’re the first person whose story I’ve actually heard. Makes me wonder about all of the other pediatric illnesses that we currently believe that kids outgrow, like milk allergies.
      Anyway, thanks again, and I’m glad that you are feeling better now. I was not diagnosed until I was in my 30s either.
      Jess

  3. Dhead

    Hi Jess,
    This is the exact situation I am in now. It is extremely frustrating. To piggyback on Amy’s point – I have been SO reluctant to start the gluten challenge after 6 months of being gluten free and feeling incredible. It is mind blowing that the only way (for now at least) to get tested for celiac disease is to put this stuff back into your body.
    When I first started GlutenFreeThin.com, I labeled myself as someone with a gluten intolerance. I even attacked the celiac community a little bit which I now deeply regret. With that said, I have learned a great deal over the past month or so that I feel has made me a better person. This disease is not a laughing matter by any means. There are too many people out there who are suffering with this and that is certainly NEVER something to take lightly.
    At first, I thought to myself that it wouldn’t be a big deal if I had a diagnosis or not. I figured if I stopped eating gluten and felt better then all was good. Why even bother trying to get a diagnosis? What difference does it make? Check out my post asking for help with all of this here: http://glutenfreethin.com/could-i-have-celiac-disease/ Those are probably two of the most ignorant questions I have asked myself. The good news? My stupid questions were answered based on my research and advice from great people in the Celiac community like yourself! Receiving an accurate diagnosis is extremely important for several reasons which you have outlined in your articles. Thank you for that!
    I decided to go ahead and start the stupid gluten challenge. I hate that I have to do it this way, but it is what it is. I will keep you updated! Here’s to feeling like crap again! UGHHHH
    Best,
    Dhead
    Glutenfreethin.com

    1. Jess Post author

      Hi D,
      I hope your gluten challenge is going okay. How much gluten do you need to eat and for how long?
      I would love to read about your experience if you eventually blog about it.
      Even if you test negative for celiac and end up with a diagnosis of non-celiac gluten sensitivity (NCGS), please know that you are welcome in our celiac community, as we know that many with NCGS get just as sick from gluten as those with celiac disease.
      Good luck to you and thanks so much for sharing your decision.
      Jess

  4. Molly (Sprue Story)

    I was sort of fortunate in this regard because, although I did try going gluten-free before getting tested for celiac disease, I didn’t actually notice any improvement after six weeks on the diet, so it was no skin off my back to start eating gluten again. I did want to be absolutely sure that I didn’t have celiac, so I got tested after several months of eating gluten, and…sure enough…I actually do have celiac. Six weeks just hadn’t been long enough for me to heal.

    I can see how anyone who does feel a lot better immediately after giving up gluten would feel iffy about going back on it, especially for several weeks or months, just for the diagnostic seal of approval, so I too hope that the gluten challenge time period will turn out to be lower than many currently call for. It’s definitely best to get tested FIRST (though I know that for various reasons it’s not always possible).

    1. Jess Post author

      Hi Molly,
      It sounds like you made the right decision to go back for testing, as had you not, you might still be walking around with undiagnosed celiac disease (and at risk of ending up with a lot of other autoimmune crud like I did due to not being diagnosed until my thirties).
      Yes, a 3 day gluten challenge, if it pans out, will be a huge step for diagnosis in all who have already started on the GF diet. I have a few family members who are GF, feel better, but cheat a lot b/c they don’t believe they have celiac disease (but were actually never tested before going GF so really don’t know if they do or not).
      I hope you’re having a good summer!
      Jess

  5. Amy

    Hi Jess! Interesting thought! The immune system seems to be working in different ways in different people. I only found one other person describing a similar progression of her disease (can’t remember where but I stumbled upon a comment somewhere while researching celiac disease).
    Also, I’d like to add one more thing as I believe doctors need to be aware of this.. I had some very serious middle ear infections growing up that resulted in a number of surgeries on my left ear (the infection spread on the bones). I have some level of hearing loss on my left ear, thankfully, I don’t need a hearing aid as I have no problem hearing the frequencies where human speech occurs. However, I will need to go to a specialist yearly for the rest of my life as my left ear cannot clean itself naturally.
    My point is that I found some info on the net that indicates that there may be a higher risk for kids with celiac disease to experience recurring and chronic ear infections that may have some serious implications. So, I think celiac did affect me many ways while growing up and I would have benefitted from keeping a gluten free diet. But science was not there at the time yet.
    (Sorry for spelling errors, I usually type on my phone.)

  6. Michele

    My daughter went off gluten for a month – just experimenting to see if it helped relieve her symptoms. She felt so much better – her stomach felt better, she didn’t feel so achey and tired, and the chronic hiccups she has had for 8 years decreased dramatically. We did realize though the she needs to know if she is gluten sensitive or actually celiac. She has started eating gluten again, and doesn’t feel well. Her stomach doesn’t feel right, she feels foggy and achey, and her hiccups have returned. We have gotten an Dr. order for the blood test, but aren’t sure how long she needs to be eating gluten to be tested. There is so much vague and conflicting information out there. We want an accurate test result, but she wants to go off gluten again asap because she feels better without it. Any advice?

    1. Jess Post author

      Hi Michele,
      I wish that the 3 day gluten challenge test was available for all of you!
      Based on taking all of the recommendations (and averaging them), it looks like she’s need to do at least 4 weeks of gluten for the blood tests and 2 weeks for biopsy. But, if she’s only been off of gluten for a month, then you might want to see where she is with her celiac antibody numbers at baseline (prior to the gluten challenge), because if they’re elevated you might be able to go straight to biopsy after a shorter gluten challenge. It can take a few months for the celiac antibodies to normalize on the GF diet, so perhaps you might still have a window of opportunity to test?
      Jess

  7. Michele

    Thanks. I appreciate your response. I did tell her to put up with it for four weeks, so glad to see that you think that is reasonable too.

    I would go ahead and have her tested now and then have her retested if the tests are inconclusive, but the test is going to cost me $200, so I would rather not do that!

    Thanks again.

  8. cat

    Hi,
    im on day 3 of my gluten challenge. I have been told 1 piece of bread for 2 weeks (although I had pizza last night – it was sooo good!!!) my biggest problem is from migraines as if I eat gluten I get constant migraines as well as the rest of the ‘textbook’ gluten symptoms. the only thing I get which seems to be odd to the doctors is that I get constipation when I eat gluten, and then occasionally the very urgent need to go.
    I will let you know how I do after 2 weeks. all I know at the moment is that its going to be a very long 2 weeks, followed by a month of trying to get better..

    1. Jess Post author

      Hi Cat,
      If I’m doing the math correctly, you should just about be done with your gluten challenge and should be getting your scope.
      I hope it all goes well for you and that you are able to get answers.
      My daughter’s GI doc told us that he has seen some celiac patients who primarily get constipated, so perhaps it is not that unusual.
      Please keep us updated!
      Jess

  9. cat

    Hi, thanks for thinking of me! I have completed the gluten challenge. the tg coeliac test came back negative. they have also done a gene test which will come back in a few weeks but that i have been told will only tell me that i could possibly have it, or i definitely cant be ceoliac.
    So to be honest i am a bit lost. I had hoped that they would do the endoscopy test as my symptoms are so bad, but unfortunately not.
    the gluten challenge has been hard, iv not been working and can hardly function.
    they have advised me to do another week of eating gluten (to take it to 4 weeks) and redo test to see if i then get a positive result. it just seems with out the positive tg test the doctors are not interested.
    i asked if i can get any help if i am ‘just gluten intollerant’ and they said no. it seems ridiculous that gluten makes me just as ill as it does to someone with coeliac disease and yet i get no support.
    i wonder if there are many people out there in the same situation?

  10. Marina

    I have been gluten-free for about three months before doing my blood test for Celiac Disease and yet I “managed” to test positive for all three auto-antibodies (Anti-Endomysial, IgA, and IgG) all with at least two times higher than normal. Maybe it had to do with me accidentally ingesting gluten and not being as careful as I should (I spent Christmas and New Year at my parents’ place), but I haven’t done the biopsy. I wonder if I’ll have to do the gluten challenge. At my parents’ place , sometimes I would get the symptoms I used to get while eating gluten, but they were less severe. I hope the challenge duration is short since I get miserable with gluten. I’ll find out tomorrow.

  11. Ann Hurst

    Hi Jess,
    My CD symptoms were fatigue, anemia, weakness, brain fog, bloating, and constipation. I feel that I have had this since childhood. I have mixed feeling about the gluten challenge because the gastroenterologist said it is quite obvious that I have Celiac Disease: anti-ttg 133 (now 4 after one year GF diet), osteopenia at age 35, ferritin 9). The gastro said that a pathological diagnosis is important but gave no reason why. I waited a year for my consultation so am reluctant and scared to re-inflame my insides when I worked so hard to heal. However, I have 3 kids so it will be helpful to them and my siblings. So, I am going to follow the 1 slice for 2 weeks challenge, starting March 6, my scope is on March 20. I’ll let you know how it goes.
    Ann

    1. Jess Post author

      Hi Ann, I hope that your challenge goes as well as it can. Please keep us updated on your results (if I had to bet, based on your TTG levels and symptoms, I’d say you have celiac).
      Jess

  12. mandi

    Hi there,
    I also am in the same boat. After being so sick for years and having every food allergy test come back negative, my allergist suggested I get off wheat and see what happens. I did immediately. Two weeks later, the Dr said I can eat it again for testing, now that I was finally starting to feel better, or I could just not do the invasive and expensive testing as the end result was to not easy gluten anyway. So I went with that! Well, 2 years later I’m still noticing issues even with a gf diet so they want to do a colonoscopy to make sure all else is good except when they do that they are doing both biopsies and said I need to eat it. The gastro Dr said CONSTANTLY for the two weeks but he’d prefer a month. I’m scared to death! One crumb sets my throat off, my stomach off, my eyes burn and feel the need to immediately close, my brain turns to mush and every inch of my joints will hurt for days. I can’t even imagine what meal after meal will do. Immediately after I’m going back to my Paleo diet, that’s the only time I’ve actually felt “good” and in hoping it’ll help to flush me quickly. But after tomorrow, it’s on from the 7th thru the 24th when my test is. Fingers crossed I’ll just be swollen and miserable not throwing up the whole time! But it’s nice to know we’re not alone so thanks!

    1. Jess Post author

      Hi Mandi,
      I am sorry that you have to go through this and I hope you are feeling okay. Please keep us updated on your results if you get a chance. Either way, it sounds like you already know that you will need to stay GF.
      Good luck!
      Jess

  13. Tracy Smith

    I have been struggling to find a diagnosis that explains my symptoms for years. I’ve been chronically anemic for 5+ years, have had chronic “explosive” diarrhea for more than a year, horrible epigastric bloating following meals, joint pain, extreme fatigue, depression…..text book Celiac, but have not found a lot of support from my doctor to find a cause until recently. I’ve started to go through menopause, so no longer can we blame my anemia on my menstrual flow (which I’ve argued has actually been somewhat lite the last few years, to no avail). I decided to go gluten free on my own about 2 months ago, and the improvement was immediate and profound. I went to see my doctor with my results, and he’s now decided to order an EDG with biopsy. I’m booked for one on March 9, but was told by both my doctor and my surgeon that I didn’t need to add gluten back in my diet. ?? I’ve had an EDG before for gastric polyps, and I REALLY don’t want to go through this again for nothing! Everything I’m reading says that you must be eating gluten at the time of testing for an accurate diagnosis. I’ve been diligent about not consuming ANY gluten, and the thought of going back to my symptoms scares me! But I’m thinking starting tomorrow, I should add 1/2 piece of bread back in. I can’t believe that they both said I didn’t need to!

    1. Jess Post author

      Hi Tracy,
      Your symptoms sound just like mine prior to my diagnosis with celiac in 2010.
      You are correct, you need to start eating gluten now in order for your results to be reliable on March 9th. Anyone who has been GF for more than about 2 weeks needs to do a gluten challenge before having an EGD to evaluate for celiac, otherwise the test can be falsely negative. Your plan, eating a half slice of bread per day, sounds perfect. I hope that your testing goes well and that you are able to get some answers. And that you don’t get too sick from your gluten challenge. Good luck!
      Jess

  14. Rebeca

    Hi Tracy,
    My son and I are having blood tests done to check for Celiac and Gluten intolerance. We’ve been on a gluten-restricted diet for several years (not 100% gluten free, but I’d say 80%). We aren’t pure by any means. But my son has less than me. He has gluten about 1 a week or less. We put him back on heavy gluten for the last three weeks. Will this be enough for blood tests to be accurate? I don’t want the tests to come back inconclusive for him and have him go through the whole drawing of blood ordeal. I “cheat” more often so have more gluten in my system. I’m also getting the test done. A gastroenterologist is the one that said three weeks of elevated gluten would be enough. What do you think?
    Thanks!
    -Rebeca

    1. Jess Post author

      Hi Rebeca, From what I’ve read and learned you can eat gluten for 2-3 weeks for a gluten challenge before an endoscopy and small bowel biopsy, but it takes longer than that for the TTG antibodies to rise (usually 6-12 weeks of gluten ingestion is recommended before blood tests, depending on the source). Hope this helps and I hope everything goes well for all of you!
      Jess

  15. Amy

    I’m a 31 year old female who lives in Canada and has been off gluten for 8 years because it causes me to have severe abdominal pain lasting days, bloating, exhaustion and joint pain. Unfortunately a year ago, when my stomach issues had gotten worse (despite being off gluten but still eating wheat-free food prepared in restaurants, likely a little glutinous), I visited a naturopath because I hadn’t had productive experiences with doctors, and she put me on a bunch of pills. My symptoms got far worse and new ones cropped up, so I actually stopped working. All this despite my efforts to avoid gluten.

    I got a new family doctor who is great. She discovered low ferritin, fatty liver (I am 5’6.5 and 115 lbs, don’t drink), a kidney stone and CIN3 cervical precancer. One time I even had low diastolic blood pressure that was so low she put me in an ambulance (of course the ER found nothing). She’s referred me to a GI doctor. The GI doctor wants to rule out celiac disease before she investigates anything else. She wants me to do a gluten challenge for 6 weeks then have a colonoscopy, endoscopy and biopsy. I’m on day 3, last night I ate pizza and the night before lasagna. I’ve never been this tired in my life – slept 14 hours last night and struggling to stay awake right now. Wrists hurt a little. Upper right abdominal pain isn’t too bad but has been constant. Will write more later but am too tired right now.

    1. Jess Post author

      Hi Amy,
      Thank you for sharing your experience. I hope that your challenge and testing go as well as possible.
      At least at the end you will know for sure whether you have celiac or NCGS. This is important as if you actually do have celiac it is important to know so that your children and relatives can be monitored and screened for symptoms, and also so you can have all necessary celiac follow-up testing done, like vitamin levels, monitoring for anemia, osteoporosis/osteopenia, etc.
      If you get a chance to write again I would be interested in learning about your results.
      Jess

      1. Amy

        Thank you for replying. Yes hopefully this will all be worth it for some sort of conclusion and then an action plan for my health. It’s been almost a year since I stopped working and I was on a promising career path… All of this is extremely difficult because it’s derailing my life. My partner in the meantime is exceeding in his studies at a prestigious law school which is fantastic but I feel like I’m not pulling my weight. I’ve also been estranged from my immediate family for years so I’m entirely financially dependent on my partner (we’re not yet married) and sometimes physically dependent. I want my life back!

        I’m now 2 weeks in, eating at least 4 slices of bread a day, and have 4 more weeks to go. I’m waking up in the middle of the night with abdominal pain, and not being able to sleep while it persists – but I need to get my sleep so I sometimes end up waking up around midnight then not getting back to sleep until around 3, then waking up around 10, 11 or 12. I don’t keep a scale but I’m certain I’ve lost more weight so my BMI is probably underweight at this point. I am rarely hungry any more. The joint pain has spread from my wrists and arms to my ankles now. A half hour after eating bread, this extreme exhaustion sets in for 2-3 hours. My thinking is fuzzy. Every other day my hearing has been coming and going in both ears for a few months now (beyond going back on wheat) which is very scary – my hearing goes for a second and then I hear a high frequency sound, then my hearing returns. The worst symptom is the crushing emotions that have come since I started this gluten challenge. I’m obviously in a bad situation but these feelings are definitely correlated to eating bread, it’s not like me to be so negative. Last night I ate wheat crust pizza and today I am full of despair. I am trying to separate these feelings from myself and recognize them as a physical symptom. My last complaint is that this has impacted my sex life; sounds strange to complain about but sex is important to me and now I barely have the energy for it or my abdominal pain will be too much for me to ‘perform’. My partner is now turning to pornography and I’m feeling so unattractive.

        I will update here if anything changes. My biopsy is scheduled in 4 weeks. If this GI doctor doesn’t find anything, then my family doctor will be referring me to a neurologist to look at nervous system diseases. I was reading about celiac disease versus MS or lyme disease, and frankly it sounds like celiac disease is the worst since it has the greatest risk of impacting life expectancy. I hate to announce that here and I apologize if I’ve offended anyone!

        Jess, thank you for your support. This is so isolating, not many people understand how sick I am or what I’m going through. Thank you, I appreciate it!

        1. Jenn

          Amy,

          I relate to much of what you said, and my heart goes out to you. I hope that you are feeling better, and that your tests were productive and worth the difficult period of eating gluten. I am having my blood drawn in two days, and am hoping to get some answers of my own soon.

          I’m sending happy thoughts your way and hoping that, even though we’re strangers, you can take comfort in knowing you aren’t alone in this struggle.

          Meanwhile, please don’t let your partner’s behavior make you feel unattractive. What he’s doing is his way of dealing with this situation. It is not a mature or compassionate way, but everyone has certain things they need to work on, and hopefully he will soon find better coping mechanisms. Still, his behavior reveals a problem in himself and NOT in you. Try to keep hope that your health will improve; and, when it does, and your energy returns, consider giving him a good talking to, lol. He needs to understand that in trying to take care of his own needs, he is exacerbating your already immense struggle.

          I went through similar – and additional – problems with my own partner, when my health began to decline. Neither of us knew how to deal with it at first. But, happily, we have worked through A LOT, and in the end we have developed a deeper bond and gained positive qualities that we may not have had I never become sick. I hope that the same will be true for you and your partner.

          Wishing you luck and good health!

          Jenn

  16. Angela

    Hi Jess! I am SO excited that I found this blog. I have recently found a Family Physician who has taken me seriously about my abdominal pain. I am 35 and for as long as I can remember have had abdominal pain, bloating and constipation. I also have times where I am depressed or anxious and I have psoriasis. The last few months I have had very intense upper right abdominal pain along with all the other symptoms above. I had the blood test for celiac disease and it came back negative. I had an ultra sound to check for gallstones, negative. Had a HIDA scan and it came back with an EF of 29%. At this point the doctor thinks it is a good idea to get an endoscopy to further rule out celiac. I am completely on board with this. I would hate to have the gallbladder removed only to still have problems. However, I stopped eating gluten 10 days ago. From what I have read here if I do a gluten challenge for 2 weeks then if I have celiac disease it should still show up in the biopsy right??? The doctor performing the surgery suggested 2-4 weeks 4 weeks being optimal. But I have been in so much pain that 4 weeks seems like an eternity. I would love to know your thoughts!

    1. Jess Post author

      Hi Angela,
      I am just seeing this now. At the Celiac Disease preceptorship that I attended at the U of Chicago last December the experts clearly stated that 2 weeks of gluten ingestion is enough prior to endoscopy, but needs to be quite a bit longer for the blood antibody testing. If I am remembering correctly, the 2 weeks data come from a nicely designed study by Dr. Leffler and his group in Boston.
      I hope everything goes as well as it can and that you are able to get some answers.
      Jess

  17. Vanessa

    Hi there,

    Thank you for the great site. I am on Day 4 of the Gluten Challenge. My doctor here in New Zealand has told me to eat 4 pieces of bread every day for 4 weeks. I am already feeling quite tired but I figure that there is never a good time to do this so am just ploughing ahead. What I am finding difficult to find out if how else I can get the same level of gluten into my diet, without it being bread? I have managed to discover that these 4 pieces amount to 20 (sorry, forgot the unit) but I cannot find any details anywhere of how much pasta or pizza etc is the equivalent. The reason I am doing it is to work out why I am low in iron as there is no discernible cause. Only because a friend got diagnosed coeliac and explained that that’s why she was low in iron did I think the same could be true of me. First blood test came back negative but that’s because I had actually started excluding gluten naturally from my diet but without really realising it. Hence the gluten challenge. I would really appreciate learning how I can keep at this challenge with more variety.

    1. Jess Post author

      Hi Vanessa,
      Thank you for writing. To be honest with you, the amount of gluten that your doctor is recommending that you ingest everyday for your gluten challenge far exceeds any recommendations that I am aware of. Drs. Guandalini and Semrad from the University of Chicago taught us that all that is needed for a gluten challenge is to eat at least 1/2 of a slice of bread per day (at least 2 weeks for an endoscopy and 6 weeks for celiac blood tests). This was at the Celiac preceptorship that I attended in December.
      I am sorry that I cannot help you more than this, but perhaps you could cut the amount you are eating in half?
      Jess

  18. Rachel

    Hi everyone, just found this site. My doctor just asked me eat gluten for 2 weeks before testing me. I’m crying as I write this. My symptoms i think are unique when I eat gluten. Parts of my face go numb, or tingle. My head spams and tingles. Severe bloating and constipation. Have had a couple of MRIs, doctors made me feel like its all my imagination, and seem bewildered by my symptoms. I figured out gluten was my problem basically by myself and feel so alone. I can’t believe that I have to feel so sick again just to be told that I officially have some form of CD.
    Like most people I have a bunch of kids and a crazy busy life. I find it overwhelming to even think about making myself sick again just to be told that “yes” gluten is making me sick.
    I find comfort reading everyone’s comments. Good to know I’m not crazy……or maybe so alone.

  19. Rachel

    I was also advised to eat gluten with every meal for 2 weeks. I read that you had recent information recommending about 1/2 slice of bread per day. I would really like to minimize the amount I consume since I am convinced it is the gluten making me sick and I am afraid to start to eat it again as recommended. Also I’m trying to minimize the recover time when I come out of this poisoning experience :(

    1. Jess Post author

      Hi Rachel,

      I am so sorry to hear that you are feeling so lousy. It sounds like you definitely already know that you have celiac disease or non-celiac gluten sensitivity, but are doing the gluten challenge to find out if you have celiac or not–this will be important to know because if you do have celiac disease it will be important for your kids to get screened and monitored for its development.

      At the celiac preceptorship that I attended at the U of Chicago last Dec they clearly stated that all that is needed for a gluten challenge prior to endoscopy is a 1/2 slice of regular bread per day for 2 weeks. I am pretty sure this is based on recommendations that have previously been made by Dr. Leffler who is the head of the celiac center at Beth Israel Deaconness in Boston.

      I hope that by the time you read this that your gluten challenge is almost over so you can return to the GF life. I wish you the best. I had to figure a lot of it out on my own as well–and I get the neurological symptoms as well. It is not fun and it is very difficult to feel sick all of the time but not have people understand because you “look okay” on the outside.

      Jess

  20. Rachel

    Hi Jess,

    My DR. is only going to give me the TTG test. Not open to anything else until we complete the first test. She even sent me info directly from a Celiac Organization to prove her point.

    I have been able to connect outside my HMO with a person to get a second opinion and I believe they will give me the genetic test as well – Not the endoscopy that you mentioned.

    I am only on day 3 of the trial, so its early going yet for me – tests are scheduled about 2 weeks from now. I’m wondering if you can help me understand why doctors don’t suggest gluten as a possible source to the problem of numbness, tingling etc? I’ve seen a neurologist twice ( 2 MRI) and 3 doctors and every appointment they are baffled by my symptoms. Because i look healthy, exercise, eat only organic, don’t drink/smoke…….they have nothing to offer. I understand that they are trained to respond to tests that show problems…..but on their off days they must have read about gluten issues – i would even think they would possibly have a relative with gluten issues.
    Thanks for reading my rant…..i just can’t believe that in this day and age with all the resources we have at our finger tips that they are completely unaware.

    Hope you have a relaxing weekend with your family…..hopefully I will too…although I may tingle a bit and be numb for most of it :)

    Rachel

  21. Liese

    Hi Jess,

    I know this is an old thread, but I just figured out, with out a doubt in my mind, that I have celiacs. I had always suspected wheat but had been too scared and poor to try to go gluten free, not to mention the two daughters, silly I know. Well after a year of crippling depression, a gallstone and the realization that my profession was not causing my body pain. I made the leap. I had never felt better. That was when all the puzzle pieces about my symptoms fell into place. My life has been peppered with the signs: diagnosed with migraines at 2, chronic canker sores, hiccups every day since I was 14 , depression, to name a few of the big ones. In my late twenties, it really started to go down hill. The physical pain at this point has gotten unbearable, the full body spasms, digestive trouble, a kidney stone, a gallstone, mouth ulcers that make eating/talking painful and refuse to heal, blisters, insomnia, and visual floaters. Not to mention my family history, My mother’s fibro/ misdiagnosed osteoarthritis at 32, my grandmother’s pancreatic cancer, all of my aunt’s short statures and gallbladder diseases, and my nephew has a gluten sensitivity (they have not had him officially diagnosed). At this point I am convinced my youngest has celiacs because of eczema since she was an infant and athletes foot that will not go away. I am pretty sure the older one is too, if not just sensitive, due to her asthma and digestive/energy levels.

    This list goes on too, but all of my symptoms went away when I went gf for the last month. It was a miracle. For the first time in my life I have hope of feeling better. But that is when the realization hit me that I have to be on gluten to get diagnosed. This was a crushing blow, but I feel it is really important so I can convince my mother to go get screened and start creating a family history for my daughter’s and nephew.

    That being said I have started back on gluten (I cried that first meal). My symptoms are back with a vengeance. I have been taking simethicone and ranitidine to ease the digestive issues. I was told today that shouldn’t be on them for the diagnostics, is this true? I have not been to the doctors since the birth of my youngest daughter (11). I have an appointment to establish care and the names of the doctors I need to request in the hospital system here.

    I didn’t mean to write a chronicle. My apologies. This is the first time since I figured it out that I have written anything about it, anywhere. This whole thing has been pretty over whelming.

    I found your blog while doing research. Your sweet and gentle nature has made me feel so much safer and calmer. Thank you for being here.

    Liese

  22. Liese

    Update:

    So I went to my appointment. She is going straight to the IgG blood work and that I only needed to be back on gluten for about a week . I wasn’t given a specific amount but I think that is because I am on it and am just eating every thing in sight. (I want to make sure the tests are as accurate as they can be. No false negatives, if I can avoid it.) And after the blood draw I can go gluten free again! Yay!

    I hope this regiment is actually the case. Is this a sign that they are making progress on the system as a whole?

    Liese

    1. Jess Post author

      Hi Liese,
      First of all, thank you so much for sharing your symptoms, experience, etc. This old post still gets a lot of internet traffic and there may be someone else out there with similar symptoms who reads this and decides to get tested.

      My understanding is that if a person has been totally GF for greater than 2 weeks that they still need to have a full gluten challenge, which is anywhere between 2 to 12 weeks prior to antibody testing. So, if you have yet to have your testing, you may want to discuss increasing the length of your challenge with your MD, if your body can tolerate it…but this is very individualized and perhaps your MD had further information about you that made her opt for the shorter duration?

      Anyway, if you get a chance, I would love to hear how all of your tests go. Good luck!

      Jess

  23. Luca

    Hi,

    I started to eat gluten free since I was told that this would have improved a thyroiditis. After 6 months of diet (the only exception was for the host at the Mass), and after having seen the improvements on thyroiditis and blood values , I made blood analysis to test if I could have been celiac and I found positive anti endomysial antibodies. I started a gluten challenge yesterday, the doctor suggested me that 20 days would have been enough but I have still some doubt on the risk of false negative (I ll have the biopsy on dec the 17th)… Has anyone done a gluten challenge like mine and what were the results?

    1. Jess Post author

      Hi Luca,
      Some of the latest info from Dr. Leffler, who is the head of the celiac center at Beth Israel in Bostn, is that a two week gluten challenge is enough prior to an endoscopy and biopsy (does need to be longer before blood tests). I hope that you are feeling okay and are not too miserable. If you’d like to post your question on my Facebook page you might get answers from others. I wish you well.
      Jess

  24. E

    I really hope that the 3 day thing happens. I’ve been strictly gluten free for 5 years and I can’t handle not knowing for sure anymore…

    I had lots of strange symptoms for so long and then started getting really sick. My mom’s friend has celiac disease and she said that I was literally identical to her symptom wise and it was like seeing herself before diagnosis. So I read up on it, found that it made SO much sense, and went to the doctor asking to be tested. They told me that they wouldn’t test me, and to just stop eating gluten. I told them I had to be tested before I stopped and they still refused. He said that the testing is expensive and they normally don’t even do it and that they just tell people to stop eating it and see how I feel. Since he refused to test me, I stopped eating it.

    My bloating and cramps improved so much in just the first 24 hours. The rest of my symptoms resolved in the coming months, and I felt like a new person. A year after I went gluten free my doctor sent me to a GI, who told me that I need to be tested. I told the GI that I had been 100% gluten free for a year. And he said that it doesn’t matter and that I need the endoscopy. He did it and said well you look good no celiac. I was like but I’ve been gluten free an entire year! :/ I’ve lost my faith in doctors lol.

    I still want answers though. I want to know if it is celiac, or NCGS, or an intolerance, or what… It HAUNTS me, not knowing!! But I’m so scared of a gluten challenge because I can’t imagine being nauseous with diarrhea and a mouth full of canker sores, swollen face, heart pain and palpitations, and a skeletal 80 pounds again… I can’t imagine going through that for 1 1/2 – 3 months! I want answers. :(

    1. Jess Post author

      Hi E,
      Thank you for writing. I am so sorry that you were misguided. There seem to be a ton of others in the same shoes as you, who feel better GF, but do not know if they have celiac or NCGS.
      One option might be to stay GF and wait for testing, like the one I wrote about last yr, to become available.
      The other is to undergo a full gluten challenge and then get biopsied. Both are valid choices. No matter what, if you have kiddos, they should probably be screened for celiac.
      Good luck!
      Jess

  25. Mixy

    Hi Jess,

    I am very happy i found your site and articles!

    I am also debating about doing a Gluten challenge or not… I think i have NGCS, but self-diagnose of course… and now i even wonder whether i may have CD instead…My symptoms are on the neurological side: brain fog, loss of focus and concentration… I have been GF for 1 year and i feel much more alert and focused, but being self-diagnose is not easy to follow the GF diet 100% of the times, particularly eating out or in family or friends homes…

    I just checked the “CD symptoms” infogram you shared, and it made me questioning things again… I got some blood tests and my iron levels were surprisingly low, considering I eat lots of red meat and iron rich food. I also had my vitD3 levels checked 1 year ago, and they were very low too (following supplementation they are OK now). I also got my calcium levels slightly below normal levels

    Eating gluten for 6-12 weeks to do the challenge seems very unsettling. have you read this article? http://www.medscape.com/viewarticle/805775
    The authors claim that a Gluten challenge of just 2 weeks and by just eating a small gluten dose is enough (3g).
    Do you know a source that explains how much gluten is 3g? Pasta, pizza slices… not just bread.
    When we say a bread slice, are we talking about cormmercially sliced bread, or one slice of a baguette for example?
    Do you think the celiac screening kits you can buy in pharmacies are reliable? I don’t mean as the only diagnose but i was thinking that it could be good to start the challenge and check regularly with those kits until it says positive and you then go to see the doctors. Basically, a way to don’t eat more gluten than needed…

    Hope that was not too many questions in one go…

    Thanks!!!

  26. Mixy

    Hi again Jess,

    Just realised that you had already made reference in your blog article to the article I was referring to (3g of gluten for 2 weeks). I should not read that fast :-)

    Thanks

  27. Jessica

    Hi, I just had fully negative bloodwork after a four week gluten challenge. I’m trying to figure out if I can trust the results. Prior to the challenge I’d been strictly gluten free for 18 months. The first two weeks of the challenge weren’t too bad, but in the past week and a half symptoms have really kicked in (my stomach has two speeds — stop and go, and joint pain is really bad, as is lower stomach pain). Not sure if I can trust the negative result or if I should keep eating gluten and seek further testing down the line. Do you know of any more research on this point?

  28. Gema

    My 3 year old daughter was put on gluten free diet a year ago. Two months ago she had the blood tests which were positive for celiac disease on a genetic level. She is to have an endoscopy in august, we were told to do the gluten challenge for 6 weeks before the test. I’m very concerned with this length, gluten makes her very ill, bloating, diahorea, vomiting, headaches and no energy. She is only 3 and doesn’t understand, also her birthday will fall in the period. Does it have to be 6 weeks since gluten effects her immediately. Any advice would be great, thank you

    1. Jess Post author

      Hi Gema,

      From what I’ve read the past few years, a gluten challenge before an endoscopy should be between 2 and 6 weeks. Here is a link to an online discussion with Dr. Leffler (from the celiac center at Beth Israel) that I participated in last year in which he recommends 2-6 weeks. My understanding is that a challenge should be stopped early if/when severe symptoms develop as it’s likely that there will be evidence on small bowel biopsy once there are symptoms. I’ll hunt around for more info for you as time permits and will share it here if/when I find it.
      I hope everything goes well for your daughter.

      Jess

  29. Megan

    I’m right in the middle of this! My family doc did the blood test. Before he ordered them, he kinda prepped me to expect it to come back negative. Instead, my autoantibody numbers were OFF THE CHARTS. He felt confident that the blood test was definitive, so he diagnosed me with celiac. But he also referred me to a GI just so the specialist would “be aware of me” and told me to avoid gluten.

    Well, the GI couldn’t get me in for about 6 weeks, so for 6 weeks I stopped gluten and felt amazing. I accidentally ingested some when I went out to eat about 2 weeks in and had a BAD reaction, so it just confirmed it for me.

    So, when the GI told me I had to do the gluten challenge, I kinda broke down. I was so upset because I was seriously afraid of how sick I would be. All she said was that I had to be “really glutened up” for 2 weeks before the biopsy.

    I’m about 24 hours into the two weeks – doing a little gluten at every meal – and I feel absolutely awful. I’m really hoping it’s worth it :(

  30. Rosie

    Hi Jess, I’ve got a blood test tomorrow to check for celiac, as I have been feeling like utter crap for months with bloating, gas and bipolar changes in bowel movements which has been incredibly uncomfortable in college (when I spend most of my school life in the library) cue awkward loud bowel noises. This may be a stupid question but over the past couple of days before my test I’ve had to go GF as my symptoms have got extremely uncomfortable, will this skew my results even if I’ve been eating gluten regularly for many months up until this point? Thanks Rosie x

    1. Jess Post author

      Hi Rosie,
      I apologize for answering this so late…a few days of being GF should not effect your test results, but a week or 2 could.
      I hope everything went as well as it could for you.
      Jess

  31. Tara

    Hi Jess,

    First off, thank you for keeping this page up and running with such informative information.

    So, I’ve been having a lot of symptoms progressively getting worse for the last two years. I finally went to my family doc and she ordered blood work for pretty much every autoimmune disease under the sun. One of them being celiacs. I just got my blood work done today but what I didn’t realize is that you’re supposed to eat gluten everyday for months before the panel… rather upset that my doctor didn’t inform me of this before o scheduled the lab work. See, my Mom is self diagnosed gluten intolerant and the kitchen is stocked with only with gluten free products. So unless I eat out… which is maybe three times a week… I’m not getting the recommended dosage. I’d say my diet is about 60% gluten free. However, this week I ate it almost every single day and I can tell you right now my symptoms have definitely gotten worse. I just want to cry right now. Do you think that’s enough gluten to get an accurate result?

  32. Lucy

    Hi Jess,

    I wonder if you can help me? I have been reading everyone’s posts and I have the same symptoms for coeliac as some, constipation, severe bloating, fatigue, weakness, brain fog, dizziness and strained breathing. I found out at the start of September that I have a strong gluten/wheat intolerance through having bloods done. They tested me for coeliac but it came back negative. However before my coeliac testing I had been eating gluten free for around 3 weeks. The gp told me that eating gluten again for just 1 week before my bloods would be fine. But I tested negative.
    Since starting my gf diet after I found out I have a strong intolerance, I have felt so much better and like a new person. However I have noticed that when I accidentally eat gluten when it has been hidden in things I didn’t expect, like subway’s steak! I felt so ill that I could barely stand, I have had bad nausea and migraines and bloating.
    Me and my mum both think that my first coeliac test results were inaccurate, as I have all the symptoms. And so I have decided to start the gluten challenge and then have more bloods done.
    I started yesterday (18th October), and instantly felt ill. I have also woken up today with a mouth ulcer which is new for me.
    I am unsure how long to do the gluten challenge for, and wondered if you could give me any ideas?
    I have been gluten free for around 2 months, up until yesterday.

    Thank you for any advice you can give!
    Lucy

  33. Nicole

    I have been gf for 5-7 years and also want to have celiac testing done. I figured it out on my own, as I have had very severe GI issues since high school. My question is- if I ask for the genetic testing, will it be inaccurate after over 5 yrs gluten free?? Has anyone had experience with this?
    Literally scared to death to do a gluten challenge, and honestly “most” people that have done a challenge STILL come back negative, which leads me to believe it’s inaccurate. I truly have a sinking feeling that for all of the testing options to be + for celiac we would need to challenge for 6 mos to 1 year to “really” damage the small intestine. I really don’t buy the 2-6 weeks challenges. (Even though it feels like we’re dying, I think it takes longer to leave enough damage to show up)
    My 11 y/o son has been gf for 3 years and is in the same boat. I thought I would try gf on him to see if he felt better (of course he was miraculously cured) & I never had the heart to put him back on for testing. My 19 y/o daughter is also gluten sensitive and limits G, but has never gone gf. She was older when this started and it was much more difficult for her to get on board. So seeing how 3 of us clearly are at the very least ncgs, I think genetic testing is important. My mother, sister, nephew and various relatives are all in the same boat. I don’t think gluten is actually good for anyone and confident that 95% of the population would feel better gf.
    Complicating testing further, I am also dairy & egg free, eat Paleo and very healthy. Stomach issues still persist & a damged gut still largely dominates my life. I have had IGA testing negative 2x since being gf. Not tested before. I also suspect crohn’/ms if not celiac. I have had IGG food sensitivity testing done and found it 100% accurate. (Highly recommend for everyone)

    Soooo- will genetic testing come back back + or does it all boil down to our tainted wheat production and the multitude of other factors prevalent in our current food system?
    Thanks so much for any insight and your work providing this website!

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