Think You Could Be Celiac? Don’t Stop Eating Gluten Just Yet!

High Gluten Flour

I decided to write this post after speaking with a number of people who would have loved to have an official diagnosis but don’t due to the fact that they stopped eating gluten before they were tested. Some people are able to stay strictly gluten free and live like a celiac whether they have an official diagnosis or not whereas others need to know for sure before they take the diet as seriously as you need to when celiac is the diagnosis. This post is for those of you in the latter category. Folks like myself who need to see it in black and white.

If you are suffering from lots of the horrible symptoms which sound like what might be celiac disease and you want an official celiac diagnosis you MUST continue eating gluten pretty consistently until you’ve been tested. Many people stop eating gluten before getting tested, often at the recommendation of their doctor to see if they feel better without gluten or because they don’t fully understand what the tests are looking for and as a result are left without a proper diagnosis.

Why do I need to eat gluten for a celiac diagnosis?

You NEED to be eating gluten for the celiac blood tests and endoscopy/biopsy to provide accurate results. These tests are looking for antibodies and damage to your intestines and there aren’t going to be antibodies or damage to find if you aren’t eating gluten.

I haven’t yet found a celiac organisation which doesn’t recommend that patients continue to eat gluten until they have a diagnosis. Celiac organisation throughout the world such as Coeliac UK, the Celiac Disease Foundation and Coeliac Australia view the small bowel biopsy as the only way to gain a celiac diagnosis.

The great thing about sticking to a gluten free diet when you’re celiac is that these antibodies disappear and the intestinal damage heals but if this healing happens before the determining tests are done there will be nothing to find and doctors won’t be able to tell if you have celiac disease or not.

It’s much easier to continue eating gluten for a little while longer than to stop eating it altogether and then be forced to start eating it again for testing purposes. I’ve had a few friends who felt so terrible when they had to start eating gluten again prior to testing that they stopped and were left without an official diagnosis.

It is possible to have problems with gluten and not be celiac. Celiac disease and non-celiac gluten sensitivity (NCGS) are different. Often the symptoms are the same but with NCGS there aren’t the same long term consequences which are linked to celiac disease and so knowing where you stand may make you less likely to cheat.

From the American Celiac Disease AllianceCeliac disease is an autoimmune condition, where the body’s immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten. Because of this, people with celiac disease are at risk for malabsorption of food, which cause nutritional deficiencies and may result in conditions such as iron deficiency anemia, osteopenia, and osteoporosis.  Persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies.  They also are not at increased risk of developing other autoimmune conditions. This is why I personally think it’s important to know what you’re dealing with.

I spoke with a friend this week who is in this should I stop eating gluten or should I get tested first predicament at the moment. I asked him. ‘If you were tested and the results came back that you had celiac disease would you take it seriously? His answer: Definitely! I’d change my whole diet

I then asked him. ‘How about if you stopped eating gluten and you felt a lot better but you never got an official diagnosis. Would you take it seriously then?’ His answer: I would but I’d probably allow myself to relax about it every now and then.

This is exactly what worries me in the case of some people who don’t get the chance at an official celiac diagnosis. An official diagnosis along with the threat of serious long term consequences may make us take the disease more seriously. I know it has for me. How would you have answered these questions? If you would have answered them similarly to my friend, you would most likely benefit from an official diagnosis and unfortunately you can’t get that unless you continue to eat gluten.

What are the alternatives to an official diagnosis by biopsy?

You cannot get an official celiac diagnosis without a endoscopy and biopsy. You can get a gene test but this will not tell you if you have celiac disease, only if it’s possible that you have it. Many people have the celiac gene but never go on to develop celiac disease so it’s not always the best indication.

The other alternative is to live as a celiac. Never eat gluten again, not even a crumb and be vigilant about cross contamination.

What are your thoughts on this topic? Where you officially diagnosed or self diagnosed? Share your thoughts and experiences in the comments below..

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  • This topic has come up FAR too often for me not to write my own post about it. You’ve inspired me to finally put my opinions of this down on paper (well e-paper) instead of just responding to post after post on Facebook. I completely agree that you need an official diagnosis. Not just because you’ll sleep better at night knowing (finally), you’ll be more vigilant if you are indeed Celiac, but also the ramifications of the diagnosis. I sure wouldn’t have had a bone density test before 30 or had nutritional panels done if not for a complete diagnosis – and look at me now, on a million supplements and rockin’ osteopenia. Thanks for sharing. You’ve inspired me to write more…

  • I am undiagnosed. I stopped eating gluten on the recommendation of a nurse/friend who had stopped eating gluten herself. My doctor at the time, never put together the bloating, diarrhea, etc as possible celiac symptoms. I asked if I should stop eating gluten and she said that it probably wouldn’t help! About 6 months later, I bit the bullet and went GF. At my next yearly checkup, I told her that I had been GF for 6 months and that it had helped enormously. It was only then that she wanted to do the blood test. IDIOT!!!! Needless to say, she is no longer my doctor. Three years later, I went to a GI guy because not all problems were resolved. He wanted me to eat gluten so that he could test me. NO WAY! The few times I have eaten gluten have resulted in vomiting and diarrhea at the same time. Boy am I strict in my observance of the diet! To me it doesn’t really matter if I am undiagnosed, but I would be curious to know. As I told the first doctor, “The empirical evidence tells me that I cannot tolerate gluten.” Enough said.

  • Ideally everyone should get tested first. When I stopped eating gluten (to deal with inflammation and pain) I had never heard of celiac disease. By the time I knew what celiac was, there was no going back for an official diagnosis. I was feeling too good to eat gluten for any reason.

    Other grains I will occasionally cheat on if I’m hungry enough. They’ll bring on many symptoms similar to glutening. But not wheat or oats. Ever. Being free from migraines is reason enough for me.

  • I am also undiagnosed – I was doing various food eliminations to try to figure out why I was bloated all the time and when I decided to try GF I knew right away that it was the problem – felt like a new woman within 48 hours!

    Went to my GP right away to ask to be tested but they denied me and tried to prescribe me heartburn medicine. Unfortunately I was coming up fast on my wedding couldn’t get more time off, so didn’t go to a GI until afterwards and messed up my chances of a diagnosis. He told me to start eating gluten again so I could get tested and I agreed – BAD IDEA. I made it two weeks and was so sick and miserable I got the blood test too soon, which came back showing scary-high levels of inflammation but no anti-gliadin antibodies, and I refused the biopsy when he said I’d have to go another month at least eating gluten to cause enough damage. I was clearly reacting to it, and if gluten is so deadly to a celiac then why would a doctor recommend that I purposely poison myself by gorging on gluten?

    I chose instead to behave as though I am celiac – vigilant not only about what I eat and cross-contamination, but also anything that I use on my body like lotions and hair products. It’s not hard at all to stick to it when you get physically sick from even the tiniest bit of gluten.

  • I would have liked to have gotten a diagnosis, but my health insurance is awful (nobody in-network where I lived, and health insurance has denied coverage for things that my primary care physician who is in-network deemed absolutely necessary). So when I realized that gluten might have been causing my constant acid reflux, I decided to give it up on my own. I realize that some people do need a formal diagnosis to stick to the diet, but I feel so good on the diet, and feel so awful when I have an accident, that it’s easy for me to live like I am, in fact, a celiac.

    I agree with many of the previous commenters – getting an official diagnosis can be very difficult because it requires us to be very assertive with our doctors and health insurance providers. While I wanted to get an official diagnosis, I felt very strongly that I would prefer to get on with my gluten-free life instead of seeing a parade of doctors and dealing with my HMO.

  • I am undiagnosed ‘gluten freer’. After months (now i think back, possibly years) of unexplained sickness, migranes, bloating, irritable skin my GP suggested I go ‘gluten free’ to see if I had a food intolerance, within 48 hours I felt like a completely different person. After a week and when I went back for my check up I couldn’t believe how much better I felt, my GP decided I was gluten sensitive and to keep an eye on it.
    I completely cut gluten out of my diet in September 2011 and a slight accidental slip up in the October (having no support about what I could/couldn’t eat was a bit trial and error) left me ‘befriending the toilet’ all evening. I went back to my GP who suggested I went back on a gluten diet for 8 weeks so that I could be tested for coeliacs. After a month of feeling great and seeing what happened after consuming a very small amount of gluten I was (as you can imagine) completely against this idea.

    I am living as an undiagnosed coeliac but anytime we go out to eat I am always questionning ingredients and cross contamination issues. At home my boyfriend (Non-GF) and I have seperate sides of the toaster – which we ask any guests staying to adhere to and seperate pots for cooking gf and non-gf pasta etc as it doesn’t make sense for him to eat as a coeliac when he can still enjoy certain foods.

    I don’t find it hard to stick to the gluten free diet and wouldn’t dream of ‘cheating’ just because I am undiagnosed as I know the consequences and how sick I could be from a small amount and I certainly can’t imagine anymore of the migranes!

  • Thanks everyone for sharing your diagnosis/non-diagnosis stories!

    It’s interesting and so great to hear from gluten free-ers who are undiagnosed but taking as much care as you would if you were officially diagnosed! I guess if you are someone who is willing to live like a celiac and stay 100% gluten free, it makes it less imperative to go through the horrible gluten challenge, especially in the States when insurance and high medical bills are involved. :-/

  • Michelle P.

    Aug 4th, 2012

    I’m a huge advocate of encouraging people to get tested first. Like the first commenter, without an official diagnosis, I never would have known all the follow-up things to be tested for, and my doctor wouldn’t have dreamed of sending me for a bone scan in my early 30s. With the celiac diagnosis though, the bone scan was ordered and I found out that I have osteopenia already. I am doing all I can now to try to build up my bone density or at least hold it steady. Had I not had this diagnosis of celiac, and subsequently, osteopenia, I would have continued to deteriorate for all those years.
    I totally understand though that so many people have already gone gf, like the other posters above, and have felt so much bettter, that they don’t want to go back on it. I’m hoping and praying that, along with a cure for cd, researchers will come up with an easier way (like a 100% accurate blood test) that could be administered to detect celiac disease even in people already consuming it.

  • This is a great post. I wish I had kept eating gluten to get the official diagnosis. My sister got the endoscopy and found out she had celiac disease. My first blood test came back negative (when I was eating gluten), but those tests really aren’t conclusive.

    Later when I started to feel worse I stopped eating gluten for a couple of weeks and then went back for the blood test. When it came out negative again, but I told my doctor I felt better not eating it they just told me to keep doing that.

    I don’t have a hard time sticking to it because my sister has to anyway, and I just feel so much better, but I do kind of wish I knew exactly what was wrong with my digestion.

  • I really wish my Dr had told me this last year – reading up on everything since then makes me think he is pretty incompetent! He advised me to go GF after I was suffering from bloating, constipation, fatigue, sickness etc (and a previous IBS diagnosis). It made a huge difference and I felt full of life all of a sudden – it was like my body was back on my side! A few weeks back my Dr suggested I start eating gluten again in order to take a coeliac test. Although I wa reluctant at first, I agreed to give it a try so I knew what I was potentially dealing with in the future (I.e. if it was sensitivity I could try to reintroduce/mistakes weren’t too much of a huge deal). I ended up only managing about a slice of bread a day and felt rubbish the entire time! The blood test came back negative, which I thought was great! The only problem now is apparently the blood tests often aren’t definitive – I should have insisted on a biopsy. It’s just my worth the hassle for me now. My body feels miles better without gluten, so I follow a GF lifestyle. Sometimes I think a diagnosis would be much easier (people sometimes assume it’s a faddy diet or I’m fussy) but at the end of the day my primary concern is how my body feels. Without gluten, I feel great 🙂

  • Oh my, I suffered 6 months of mouth ulcers, living on mash potato and packet jelly if I was out shopping. I was so ill my GP gave me a blood test _ nothing. So I tried various foods and kept note of what gave me problems. That when my doctor noticed that like you oh gracious traveller I had pain eating a banana/ *(which does not contain gluten says she )
    It was put down to “in my head ”
    Since then after staying GF I have had 3 bad reactions- Blood pudding(barley)
    Potato fries (flour coated )
    Last week it was dry roast peanuts.( Rolled in Flour)
    Was I ill? oh yes so bad I was taken to the emergency room. Thank heavens for buscopan and pain killers.

  • If you have separate gluten free cookware in a household
    of gluten eaters, color code them by finding replacement pieces that have
    the same or similar color scheme (example: red handled pots,
    red cutting board, red spatula etc as gluten free utensils.

    It is essential that an accurate a diagnosis is formed otherwise the consequences
    may well be deadly. ‘ Continuing to eat gluten, even small amounts, provokes an immune response that perpetuates the disease process.