Celiac Testing Myth #2 - Go Gluten-Free First

The best way to find out if a gluten-free diet will help you is to try it. But that doesn’t mean it’s the first thing you should do.

Celiac disease is not the only form of gluten intolerance, and often times food sensitivities are impossible to diagnose without trying an elimination diet. The current food sensitivity testing is unreliable, and generally is used as a starting point for things to try to eliminate rather than as a diagnostic tool. Even celiac testing is notorious for false negatives. With gluten intolerance on the rise, many people think it makes sense to skip testing and just go gluten-free.

Trying a gluten-free diet isn’t dangerous, and if it makes you feel better of course you’ll want to stick with it. People who advocate a gluten-free trial prior to testing reason that after a few weeks of the diet, if you feel better you can go ahead with testing to confirm your suspicions and find out the extent of the damage.

It’s more complicated than that for a couple reasons.

Caution! Image courtesy of Brooklyn Gastroenterology and Endoscopy

First – To get an accurate test result for celiac disease you must be eating at least 20 grams of gluten a day for three months. Even a short period of time without gluten can cause the detectable signs of celiac disease to go away! So just go back on gluten, right?

Wrong! It turns out that many people who have a problem with gluten have much more extreme reactions once they reintroduce it. Some people have such severe symptoms in the first place that going back on gluten seems unbearable. While this is a good confirmation that gluten is a problem for you, it also can ruin your chances of getting an official celiac diagnosis!

There’s another complication as well… What if you feel the same or worse when you cut gluten out? This could mean that gluten isn’t a problem for you and something else is… Or it could mean it’s a bigger problem than you expected.

Here are some of the reasons gluten intolerant or celiac people don’t always feel better off gluten:

  • Some people experience actual withdrawal symptoms when they cut it out. Gluten can form gluteomorphins in the body, which act as addictive opiates. When you cutting out gluten, many people feel awful at first because you are basically coming off a drug!
  • If you are replacing old favorites with new “gluten-free” foods, you may react to the replacement! Rice flour, xantham gum, arrowroot, guar gum, increased corn, nuts, and soy… any new way of eating or introduction of new foods has the potential to throw you off kilter. Even just eliminating gluten without replacing it can change the amount of carbs you are eating and make you feel weird for a while.
  • If you think you’ve eliminated gluten, but have actually just gone “gluten-lite,” you may continue to react to gluten. If you are getting even tiny amounts from shared cooking utensils, cross-contaminated ingredients, or personal care products you may not feel a difference, or may even feel worse as you become more sensitive.
  • If you have been severely damaged by gluten, it may take a while for you to start feeling better.
  • You are also intolerant to something else that causes similar symptoms. Lactose is a common one, since villi that are damaged by celiac often lose the ability to produce lactase.

Whether you feel better, worse, or the same during a short gluten-free trial, it will not tell you whether you have celiac disease If you are thinking about trying a gluten-free diet, get your celiac testing done first! Then try the diet regardless of the results. There are more ways to be gluten-intolerant than just celiac disease, so it’s worth a try.

So… Go Gluten Free First? Myth: Busted!

Update: Check out the other myths we’ve exposed so far:

This post is part of Kelly the Kitchen Kop’s Real Food Wednesday.

Related posts:

24 comments to Celiac Testing Myth #2 – Go Gluten-Free First

  • This is a great post. I went gluten free via an elimination diet, because I was extremely overweight. I still am…but I’ve gone from being obese to just slightly chubby :) :) This all started before I realized that maybe I had Celiac disease…so by that time it was too late to test for that. I left a comment on another post about this :) :) I have no desire to eat gluten again, because it really left me feeling sluggish and yucky… This is a really interesting topic. Thanks for writing about it :) Love and hugs from the ocean shores of California, Heather ;)

    • Joy

      Isn’t it amazing how many people don’t know that you don’t have to be skinny to have celiac disease? Even many doctors are misinformed on that one. Anyway, if you don’t test you may never know, but at least you know how to feel better! I wouldn’t wish a gluten challenge on my worst enemy, so the more people get tested up front, the better!

  • [...] http://the-muscle-gain-truth.blogspot.comPowered by Yahoo! AnswersSusan asks…How to gain weight with gluten free, dairy free diet?A friend is under 5 foot, and abou…ontent">How to gain weight with gluten free, dairy free diet?A friend is under 5 foot, and about 94 [...]

  • Alison

    Over a year ago I took my 4 year old off Gluten to see if it would help him go poop. He would not go in the potty and usually complained it hurt. Within 5 days of taking him off Gluten he started pooping on the pot and started going potty fairly willingly. But as months have passed we have allowed him to break the diet now and then (sometimes 2 times a week for birthdays and special treats) and ever since, he rarely goes to the bathroom daily. For a while I felt like I had figured things out but this last month has been really hard for us. For March I allowed him to try having pizza for school lunch once a week and pretty soon he was only going poop every 3 days. So I took him strictly off Gluten again (now for nearly 3 weeks) and he is still only pooping every 3 days and has been having pain in the anus with pooping. I am about to loose faith in the Gluten free diet, but you mentioned that it can be harder on the body once someone reintroduces it. Or maybe he is now growing sensitive to another food? How long do you think it takes after reintroduction to get back to the benefits of Gluten free? I am feeling the need to see a western doctor or naturopath about this problem again. Are there any good experts on elimination diets, GI issues, and potty training of boys who I could work with in Portland, OR? It is hard doing this kind of diet with a 5 year old and knowing when a food is making him feel bad. But when he poops daily again, without pain I will know he is right.

    • Joy

      Hi Alison,
      I think it sounds like you have clear evidence that gluten could be his main issue, or at least a major part of his problem. Over time, many people become more sensitive to it as well. Are you 100% sure he is 100% gluten-free at this point?

      I ask because even if you no longer feed him any gluten, even the slightest cross-contamination can be an issue. If anyone else in your home eats gluten, or he is at all exposed at school, that could be creating cross-contamination issues.

      That said, while gluten may be a huge piece of the puzzle, it may not be the *only* piece of the puzzle. Small Intestine Bacterial Overgrowth (SIBO), other food sensitivities (which can be caused by the underlying gluten intolerance), or other issues could be a part of the puzzle. Personally, I was very constipated when we first went off gluten (and have dealt with alternating constipation and diarrhea). It turned out that many of the substitute foods affected me negatively as well. It was by doing the GAPS diet that I finally became regular.

      Dr. Alison Siebecker is a naturopath who specializes in SIBO. Her website with great information about it. She also has a list of doctors. My naturopath, Dr. Louise Rose of Rose Cabinet Medicine, is also good with these kinds of issues and has 25 years experience as a whole foods chef as well! I’m sure there are many other fantastic doctors in our area, too! I’m working on meeting more doctors in person so that I can recommend them with confidence.

      Good luck to you in finding answers for your son! If you need some support in making sure your son is actually 100% gluten-free, implementing other dietary changes for him, or helping him understand the changes you are making for him, I may be able to provide support through coaching or hands-on help as well!

      -Joy

      • Alison

        Thanks so much for your information and ideas. Its been a bit like solving a mystery and lately I’ve need some support to evaluate my clues.

        You are right about gluten exposure at school. I happened to see my boy eating a granola bar for snack as I walked out of school today. He looked at me and said that the teacher said it was gluten free, although I know he kind of knew better. It is one of the granola bars that I used to serve him at the start of the diet since it had no wheat (only oats) but I became suspicious of it containing enough gluten to mess up my son’s digestion . I found out that he has had the bars at least once in the last couple of weeks. I explained to the teacher that that they are not really Gluten free. Hopefully in two weeks we will then be clear of Gluten and can really test out the GF diet again.

        I am also thinking about the Easter candy that he has been eating. I bet some of it could have some amounts of Gluten.

        I think since my son did not test positive for Celiac, I have been under the impression that he can tolerate some gluten now and then, but maybe I have been wrong. I was one of those people that did not have the test done before we put him on the diet. And then had the test done only about a month later, with eating gluten every couple of days for about a week. I do wonder if the test was accurate. I’m in that tough place. But for now, it seems like I am going to try to stick to a strict GF diet, even though I constantly am questioning both the Gluten and the GF diet.

        Thanks again.

  • Lori

    I’ve been having symptoms of gluten intolerance on and off for years. I never put 2 and 2 together. Then, about 6 weeks ago my symptoms became much worse. I went to the doctor 2 1/2 weeks ago. He did some geberal bloodwork. Everything fell into normal ranges. This didn’t explain my GI problems, fatigue, and weakness. I made another appointment. This time I made him sit and listen closely to my symptoms. I’m having an abdominal ultasound done in 2 days. He also ordered a celiac disease blood test, My question is: I haven’t eaten any wheat for the last 5 days. Will this make a difference for the celiac blood test? If so, I’ll postpone the bloodwork and resume wheat . I want an acurate as possible test.

    Thanks for your time.

    Lori

    • Joy

      Hi Lori,
      I’m glad to hear that you are getting screened for celiac. Please remember I am not a health care practitioner and I am just sharing my personal opinion, not medical advice.

      Whether or not your five days without wheat will have been enough to impact your blood work is questionable. It partly depends on how much gluten you were ingesting before the past 5 days. You still have two days to go, though. Assuming I’d been eating wheat regularly prior to the 5 days, if I were in your shoes I would gorge on gluten from now until the time of the test, and go ahead with it. If your consumption has been very low in general, I would postpone and try to eat a lot for the next few weeks and then get the test. If an endoscopy is indicated you will need to continue on gluten even after your blood test, until that can be done. Have you talked with your GI about this?

      One more thing… you may wish to also be tested for Small Intestine Bacterial Overgrowth. You do not need to be gluten free for this test. You fast overnight, then drink a glucose solution and have a breath test. I would probably do that on a different day.

      Once you are through with celiac testing, regardless of the results, I hope you will try going 100% gluten-free for at least a month, to see if it makes a positive difference in your life!
      Joy

      • Lori

        Thanks for the info. I’ve going back and forth with this in my head. I was eating plenty of wheat prior to the last 5 days. I never even suspected gluten as the culprit until the doctor order the celiac bloodwork. So, I think I’ll consume plenty of gluten over the next 2 days and go for it. My stomach actually started feeling slightly better today and I had a little more energy. I’ll definitely go off gluten for a good long trial period after all tests are completed (negative or positive results).

        Thanks so much.

        Lori

  • Lasey

    What is the point of being tested though? Is there any real benefit to having a tested diagnosis from a doctor? I just went gluten free because I didn’t want to do the test. They wanted to stick that thing down my throat all the way into my intestines! I mean come on that’s horrid. Why not just try the diet first?

  • Elene

    Our experience is that the more your doctor diagnoses, the more information your insurance company has on you. Once you get your autoimmune disorder to disappear with diet and supplements and want to change insurance companies or raise your deductible for instance. The celiac/auto-immune disorder will follow you around like a ghost from the past. We are 2 years apart in age and my husband’s insurance is double what mine is. He was not allowed to raise his deductible or change the insurance because of pre-existing conditions. I wish we’d known.

  • Marcus

    In 2010 my fibromyalgia got worse and I felt I was dying.

    I went gluten free in October 2010 thanks to Elizabeth Hasselbeck who appeared on Dr Oz.

    I felt much better after 2 weeks.
    Whenever I felt sick again I blamed it on hidden gluten.
    The way I’m eating now (salads, rice, potatoes, meat, no processed foods) there is no way I can
    be ingesting gluten but I’m feeling worse.

    I reintroduced 2 slices of bread per day in November 2012 for future celiac testing.
    I didn’t feel sick from this.
    But 2 weeks later I am starting to feel worse again.
    Why didn’t I have an immediate reaction like your article says?

    BTW it’s scary how doctors know very little about Celiac and gluten.

    I’m looking forward to testing positive so they stop thinking my pain is in my head.

    • Joy

      Hi Marcus,
      I’m sorry you’re having such a hard time. Many people who have problems with gluten also have other digestive issues and health issues that have been caused by malabsorption over time. Many people who go gluten-free see improvement, but then start to notice other food intolerances.

      It’s likely that gluten exposure is NOT the culprit, but before being sure of that, do consider potential cross-contamination. If you share a kitchen with others, eat in restaurants, or are using your old cookware that could be an issue.

      It’s also possible that your gut bacteria is out of whack. People with SIBO (small intestine bacterial overgrowth) need to avoid all starches – potatoes and rice both fall into that category. Some of us also need to eat our food cooked rather than raw for easier digestion, and to introduce probiotic foods. Have you looked into healing diets such as GAPS?

      I’m sorry to say I don’t think 2 slices per day of bread will be enough for a positive test result for most people for a positive test result after years of being gluten-free. I did a lot of research on that and 4 slices or 20 grams per day of gluten for several months is what I decided to try. Like you, at first I didn’t notice major changes. But over the course of two months it became unbearable. I had to quit before I had wanted to. On top of it, my tests were negative.

      It’s important to realize that we can have negative celiac results and still have a problem with gluten. For one thing, not all people with celiac have positive test results, and for another, there are other ways to react to gluten.

  • Renae

    Your post explains a lot about my experiences:

    I have been diagnosed with fibromyalgia and IBS (and what seems like a million other things). I have started the leaky gut cure diet (which is very similar to the GAPS diet), and at first it made me feel great. Then I started to get withdrawal symptoms and craving grains really badly, so I would eat anything allowed on the diet (even when I wasn’t at all hungry) to try to curb the cravings. Once I gave into eating a small pastry, and I had a week-long, severe flare-up of my FMS and IBS symptoms. I haven’t eaten gluten since then! But I’m still not feeling too good; in fact, I’ve had quite a bad flare-up for the last fortnight… probably because only a few of the things I eat are organic and because of die-off… everything else isn’t organic, because I can’t afford organic food as a poor Centrelink pensioner. And my health has thus far prevented me from getting a job. I had developed intolerances to many other things by the time I was 12 (lactose, fructose, fructans and galactans) and I have numerous allergies.

    So my question is:

    What do I do now? I have already gone of off gluten for over a month (although I may eating it unawares as I share a kitchen with people who do eat gluten). The doctor was going to test me for coeliac disease but my mum wouldn’t allow it (I was under 18 at the time). I have recently turned 18 but now that I have already gone gluten free, will I never know? What can I do to find out if I have a an intolerance or an allergy? How can I make sure that I don’t have gluten?

    • Joy

      It’s too late for accurate testing for celiac, and I do not recommend a gluten challenge to find out. I did that and not only did I end up with a negative result, but I seriously flared all my symptoms, worse than ever before! You may have enough damage done to get a positive biopsy at this point if you are indeed celiac, but a negative would not rule it out since you have been gluten-free.

      Your IBS and Fibro diagnosis as well as your problems with FODMAP foods both point toward SIBO. There are a few more treatment options related to it that go beyond diet (but still include the same principles). Testing for it is very easy.

      As for the cravings – it’s OK to slip from time to time. But try to slip in ways that are less harmful. For me, that means I may cheat on sugar sometimes but never on gluten. Figure out the priorities based on which foods are the worst for your body, and then try to find cheats that will do less harm in the long run.

      • Renae

        Hi Joy,

        Thank you so much for bringing up SIBO! I had never heard of this before; but now that you have mentioned it, I have made a doctor’s appointment so that I can be tested for it. It also made me realise that I need to be continuing my IBS diet more strictly than I have been while on the leaky gut diet. It’s comforting to know that I may soon have proof that my symptoms have a physical cause (I’ve always known this, but proving it to others has been difficult).

        If I have SIBO and get treated for that, and stay on the right diet/lifestyle afterwards, and cotinue to get trigger point therapy… I think it’s possible that my symptoms could all almost disappear so that the only thing that brings them back is breaking my diet/lifestyle or excess stress. This is an awesome possibility!

        (Note: the term lifestyle used above refers to a whole bunch of things I’ve started doing this year that are helping me, e.g. good sleep hygiene, proper exercise regimen (gradually building up intensity), avoiding toxins, not getting overworked and taking the time to care for my mental health, etc.)

        I looked into the gluten intolerance thing, and it turns out that one of my uncles used to have bowel cancer. I told my mother about the possible link between gluten and her symptoms, so she went to her doctor and is now in the process of being screened for celiac disease (she has chronic fatigue and depression). I may have a genetic problem!

        By the way, I found a cheaper way to be more organic – I discovered a Fruit and Vege Wash that can be used to wash pesticides and other nasty chemicals from the produce I buy. It cost about $10 and lasts for 200 washes – much cheaper than buying organically grown produce! (I’m sure it’s not quite as effective but it’s all I can afford right now.) And since I buy the produce from the local farmer’s market at a really cheap price, I can also afford to buy pantry items that are organic (and that fit my diet of course). I’m still trying to figure out where to get the organic meat though…

        Anyway, thank you so much for your reply! It’s the first glimmer of hope that I’ve had in years.

        How is your health going? Are you finding that most of your symptoms are gone after SIBO treatment and sticking to the diet? (I’m assuming that this is what you did.)

        • Joy

          Hi Renae,
          I’m glad to hear you are making changes that are improving your health!

          I keep thinking I’m going to write a post about what’s happened since I last wrote but the time just hasn’t been here! Anyway, yes, I did the antibiotic treatment of Rifaximin and Metronidazole and it was AMAZING how they immediately changed my symptoms and basically eliminated all my gut issues. I was able to eat some rice and potatoes and beans with no trouble at all while on them.

          Here’s the brief version of what has followed:

          I had planned to be really careful with my diet after the fact, as SIBO can recur and requires a maintenance diet, but being able to eat a few more things was really nice! I binged a bit and ended up seeing some symptoms return. I started acupuncture and shiatsu and took it easy with my diet and I’m back to doing very well! I’m able to “cheat” a bit without noticeable symptoms, too.

          -Joy

  • Abby

    Hi there,
    Three and a half years ago, I significantly reduce my gluten intake after falling in love with someone who is gluten intolerant. It was just easier to eat what he could eat. Around the same time I started getting a few little itchy dots around my armpits, but didn’t think much of it – they were annoying but not a huge problem. I was told that it was probably fungal and to wash my running clothes better. Fast forward to about 6 months ago when those itchy little dots turned into a raging rash that eventually covered the sides and front of my torso in an alarmingly symmetrical pattern – blistering sores that itched like nothing I have ever felt before. 5 inconclusive biopsies, a patch test, and many theories and misdiagnoses later, I am really thinking that it is Dermatitis herpetiformis. But even though the last biopsy was taken from an area immediately next to the rash, it was still inconclusive. I had stopped eating gluten about 11 days prior to that and I am wondering if that ruined my chances of a positive reading. But I am terrified of going back to eating gluten – I have not eaten gluten for nearly a month and the rash is better than it has been in a long time. I do not ever want to feel that way again. But to get a positive diagnosis, I keep reading that I need to eat gluten for 6-12 weeks prior to testing. I am so scared to do that. I will lose my mind. The rash drove my to the edge of my sanity. I don’t know what to do.

    • Joy

      Hi Abby,
      It does sound like it could be DH. Having gone through a gluten challenge for testing myself, I now think it’s a terrible idea. You are probably better off without a conclusive diagnosis. Have you been tested for celiac disease? Many people who have DH also test positive for celiac. If the damage and exposure is recent, even small exposure *can* result in a positive test. It’s just that false negative tests are common when you are not ingesting a lot of gluten.

      If I were in your shoes knowing what I know now, I’d get the celiac test understanding that a false negative is a possibility. Then I’d COMPLETELY ELIMINATE ALL TRACES OF GLUTEN from my life, and cut way down on iodine as well. Give it a few months, and see if your symptoms disappear. (DH can stick around for a while). If they do, that’s great.

      Then, if you’re feeling crazy you can try a little bit of gluten and see if it brings symptoms back. Or better yet, you can just ditch the poison forever :)

      I hope you get some relief soon!
      Joy

  • vanessa

    I have a question…hoping for a reply soon:) i had a positive blood test for celiac. Have been gluten free for 3 1\2 weeks,still with intermittent GI problems. I now have an endoscopy/colonoscopy with biopsy in 6 days. I have been cramming myself with gluten knowing it needs to be in my system. Do you think i will still show damage with my scopes or do you think i should reschedule? They moved me up on my exam because i have started to bleed. A response would be appreciated. Thanks

    • Joy

      There may be less severe damage because of your 3.5 weeks without gluten, but I’d still get the test right away. You are sick and making yourself sicker. A positive blood test is enough to be sure gluten is a great big huge problem for you, and many doctors consider that a positive diagnosis. The benefit of the scope will be to establish your base line damage and to also make sure nothing else they can see that way is going on. Get that scope right away, then get back to healing ASAP!!! Best of luck to you!

  • vanessa

    Thanks so much. I appreciate your advice

Leave a Reply

Subscribe to the Newsletter

Berkey Water Filter
GlutenTox Test Kit
Berkey Water Filters