Common Questions & Answers

celiac faq

Dude Note: I’ll be adding to this section as time goes. So c’mon back now y’all.

I’ve just been diagnosed with celiac. What the heck do I do now?

First…breathe. And then…keep breathing.

It’s easy to feel overwhelmed, confused, scared and even angry when first diagnosed. But have no fear! A gluten free diet is not really that difficult once you get the hang of it. And you will begin to heal.

A fellow celiac’s suggestions to help get you started can be found here.

An excellent book for the newly diagnosed is Celiac Disease: The First Year by Jules Dowler Shepherd.

Another amazing resource for celiacs is Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

And another is Celiac Disease: The Hidden Epidemic by Dr. Peter Green and Rory Jones.

Knowledge about CD gives you power over it and will help you see that this disease is manageable. There are no medications to take and no cure, but it can be put into remission by adhering to a strict gluten free diet. Fortunately, we have many options available to us now.

And a word to the wise: stay away from the gluten-free processed foods while your body heals. Once you start to feel better, you can gradually bring them back in if you so desire.

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

Source: Univ of Chicago Celiac Disease Center

How long does it take for the villi to heal themselves once you go completely gluten-free?

The amount of time it takes the villi to heal themselves is highly variable. It can take from 1-2 weeks or several years for most. Unfortunately, complete healing never occurs for some.

Source: Univ of Chicago Celiac Disease Center

Why don’t I feel better even though I’m on a gluten-free diet?

First, make sure that you really are on a gluten-free diet; gluten has a way of sneaking into your system through products other than food, like cosmetics, lotions, lipstick and prescription drugs.

Second, examine other potential causes for these symptoms, especially thyroid disease.

Third, I eventually gave up dairy, corn and soy. They are gluten free, but they didn’t sit well with me. Made a huge difference. You may want to give it a shot.

Lastly…be patient. It can take time to start feeling better.

What are some common ways gluten can sneak into my diet?

It’s a gluten-filled world out there folks. Here are some items to be aware of.

  • In broth, like at Chinese restaurants
  • Foods fried in common grease in fryers: chips/tortillas at Mexican restaurants
  • Tortilla press – is the same one used for flour and corn tortillas?
  • Pizza – are there dedicated areas or baking dishes?
  • Imitation crab in sushi
  • Careless food preparation in restaurants
  • Communion wafers
  • Lipstick, lip gloss, or Lotions that come in contact with the mouth and get swallowed
  • Toothpaste, mouthwash, breath mints, dental treatments
  • Chewing gum
  • Herbal teas or teas with malted barley (labels should indicate WHEAT)
  • Medications
  • Condiments
  • Colanders and toasters
  • “Wheat-free” rye bread
  • Dog food/shampoo (wash your hands)
  • Marinades
  • Soy sauce
  • Salad dressing

How do I avoid cross-contamination?

At home the following practices will go a long way toward avoiding cross contamination:

A celiac should have their own butter dish and a cutting board that is used for gluten free foods only.

A celiac should have their own toaster. A toaster oven, where the rack can be removed and washed if others have used it may be a good alternative. If you do not have access to a separate toaster, try a toaster bag, a silicon bag that holds the bread while it is toasted. The bread toasts right through the bag.

If it is not practical to have a section of the counter top set aside for preparing gluten free food only, always make sure that the counter space you are using to prepare gluten free food is freshly washed to ensure it is free from crumbs or flour dust.

Do gluten free baking first, and have it well wrapped and stored before doing anything with regular flours. Flour dust (in the air) from regular flours could settle on the gluten free products, thus contaminating them.

Note: Although this doesn’t fall into the cross contamination area, it is worth noting that a Celiac should take precautions against breathing in flour dust when using other than gluten free flours. Flour dust that settles on the nasal passages may eventually get swallowed and end up being digested.

When making sandwiches, do the gluten free ones first – otherwise be sure to wash your hands after touching regular bread and before touching gluten free supplies.

Use clean utensils and avoid “double dipping” – knives or spoons are OK the first time, but once they have touched food with gluten, they can contaminate the food in the container if used again. If it is too difficult to train other family members in this regard, it would be wise for the celiac to have their own jar of jam, peanut butter, mustard, etc.

Be especially alert and cautious when you have guests helping in the kitchen – they will not have your gluten awareness. Also, it is when you are otherwise distracted that you are more likely to make a gluten error.

Make sure any pots, utensils, etc. that are used for other foods are thoroughly scrubbed before using for gluten free foods. In the case of something like muffin tins, paper liners may be a worthwhile consideration.

It is best to have a separate set of utensils with porous surfaces, such as wooden spoons, for your gluten free baking. These utensils might retain some gluten particles after cleaning.

If using lentils, be sure to meticulously pick them over before putting in the pot to cook. Even if you buy them packaged, it is not uncommon to find kernels of wheat or oats (or pebbles) in with the lentils.

Away from home, be aware of sources of cross contamination:

Products in bulk bins can become contaminated by using the scoops in more than one bin. There is no assurance that the other customers will be as cautious as you. Also, flour dust in the air around these bins can cause a problem.

At the deli counter, where gluten free meats are being cut using the same utensils without cleaning in between or where cut meats often overlap on the counter.

Buffet lunches, where the chef tests the temperatures in all the dishes using one thermometer, or spoons are used for more than one dish.
French fries cooked in oil where battered foods have been fried.
Meat cooked on a grill which hasn’t been cleaned after cooking regular food with gluten.

Gluten-free pasta may be cooked in water used for regular pasta and rice may be cooked in broth containing gluten.

Milling of gluten free grains on equipment that has been used for regular grains.

In product production where a gluten free product is not produced on a dedicated line. Cereals and candy bars that have gluten free ingredients may be produced after a non GF item without having the equipment cleaned thoroughly in between.

Adapted from an article prepared by the CCA Calgary Chapter Celiac Support Group.

Are tests from various labs (Enterolab and Cyrex Labs, etc. ) reliable for diagnosing gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity. We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

Non-celiac gluten sensitivity is an adverse food-induced reaction, possibly immune-mediated, but for which we have no diagnostic test available. This is a reaction in the digestive tract that causes gastrointestinal symptoms similar to irritable bowel syndrome (IBS).

It may also lead to other body systems problems, such as fatigue, headache, etc. Unlike celiac disease however, it’s not restricted to people that are HLA-DQ2 and/or DQ8 (the genes that must be present for celiac disease to exist), and it might be transient. Also, there is no known association with autoimmune conditions, and it’s not known to be associated, if untreated, with long-term risk of malignancies.

Although there is currently no diagnostic test (even an intestinal biopsy would be normal), we’re actively involved in research to define a biological marker that could be used to support a diagnosis of non-celiac gluten sensitivity.

Source: Univ of Chicago Celiac Disease Center

Is life as I know it over?

Nope…it’s just beginning.

OMG! Can I still drink??

Absolutely…and more options than you may think. There’s a lot of bad info out there when it comes to booze. I’ve got you covered right here. You’re welcome :)

#NoCureNoChoice

28 Comments

  1. 1

    Molly (Sprue Story)

    This is awesome, nice to see it all gathered in one place.

    I have one little thought on the sneaky gluten answer: Is it problematic to include ‘“Wheat-free” rye bread’ on the list? Might that not suggest that rye is itself gluten-free? (Although, I CAN see how it fits on the list, as a kind of food that someone clueless about the GFD would offer to someone with celiac. “Oh, you can’t eat wheat, right? Here…”)

    Reply
    1. 1.1

      IrishHeart

      You raise a good point, Molly. Yes, we celiacs know rye is out, but I suspect the list maker for the celiac group felt it was a good idea to include it as one for the general population perhaps? In any case, yes, rye (“wheat free” or otherwise) is a NO-NO.

      That said I have made “mock rye” bread with some success :)

      Reply
      1. 1.1.1

        Molly (SprueStory)

        Like pumpernickel-style? I am craving pumpernickel like nothing else recently! I’ve seen some recipes online but am hesitant to try in case the results are lackluster.

        Reply
        1. 1.1.1.1

          IrishHeart

          This one. I am not a rye fan, but the hubs is and he thought it was pretty good.

          http://www.livingwithout.com/recipes/gluten_free_dairy_free_mock_rye_bread-1535-1.html

          Reply
  2. 2

    IrishHeart

    Here’s another “mock rye” I tried (scroll down a bit)

    http://www.livingwithout.com/issues/3_6/Gluten-Free-Bread-1335-1.html

    Reply
  3. 3

    IrishHeart

    What annual follow-up care should the celiac patient be getting?

    The most important thing is a good physical examination. Blood work, x-rays, CAT scans, mammograms and PSA tests, while valuable, do not replace a physical examination. The physical exam should include a breast exam for women, prostate exam for men, and a rectal exam for everyone. Blood work should include measurements of folic acid, calcium, and iron, and antibodies testing. Bone mineral density testing should be repeated annually for those with abnormal results, and every several years for those with normal results. Finally, patients with celiac disease should have at least one follow-up biopsy to confirm response–normalization of the biopsy sample. Patients who are non-responders, or whose clinical situation is somewhat confusing, may need more repeated biopsies at intervals.

    Source: Dr. Peter Green

    Reply
    1. 3.1

      Julie N

      I’m sorry, I’m not following the end. You mention biopsies, but what is being biopsied? Your website has been super helpful and informative! Newly diagnosed with hashimotos, I will be tested for celiac soon. Even if negative, I’ve been thinking about going gluten free. Thanks so much!! :)

      Reply
      1. 3.1.1

        SusanAtHome

        They biopsy the villi. The villi line the stomach and absorb all the nutrition from the foods that we eat. In celiacs, gluten causes the auto immune system to destroy the villi. That leads to serious malnutrition and organ damage.

        All the organs of the entire body are damaged daily by simply doing their functions. Nutrition gives the body what it needs to make repairs to this daily damage. When the villi are damaged because a celiac has lost those villi, there is no way for the body to heal. Eventually, the organ stops working well enough to keep the body healthy. Then we get all the same symptoms as someone who has damage from an illness. The difference is that once a celiac stops eating gluten AND the villi heal, the body goes about healing those organs again.

        Reply
  4. 4

    Jeff Kelly

    Ok this comes from U Chicago and while I must agree they appear to be doing cutting edge research in the IL-15 connection, I cannot and do not agree on their denigration of the stool tests for antibodies from Enterolab. Published studies also denigrate blood antibody tests, which is conveniently omitted from this material, so it is at best misleading and at worst….well, use your imagination.
    Physicians are the sources of the least reliable information on Celiac disease. If you want to learn anything about it, what you need to do is experiment with a strict gluten free diet and the known elements of malabsorption illness(osteoporosis, Vit D deficiency, etc.) and if a Gastroeneterologist ever suggests the so called gold standard(ie, biopsy that is positive for villi destruction) then praise the Lord and contact the fucking MEDIA and I don’t mean your local radio station, I mean fucking CNN because that day should be marked in fucking HISTORY.
    Enterolab also does gene testing which can be quite helpful, even if we accept the denigration of its stool test results. Basically we Celiacs have no fucking support out there from science and when we find it, some bullshit doctor who learned some bullshit dogma in medical school on the topic(as all of them DID) is sure to denigrate IT as well, so can we WIN? NO!!

    Reply
    1. 4.1

      Terry O.

      I am fortunate that my doctor was willing to accept the Enterolab report, even though he would only go so far as calling it a probable Celiac diagnosis. It definitely bugs me that this test isn’t considered “legitimate” by the University of Chicago. I cancelled the biopsy because eating gluten at the level they wanted was making me deathly ill and it was 6 weeks to go until the appointment. When you have a job that you can’t afford to lose (and dependents who would also be hurt), it’s a no-brainer decision.

      It’s cruel to allow people to suffer just for the sake of a blood test and a biopsy. They also minimize the importance of how well you do on the gluten-free diet and the fact that it is an equal component of the whole CD “gold standard”. IMO, it’s the one that matters most in the end.

      Reply
      1. 4.1.1

        Terry O.

        http://www.ncbi.nlm.nih.gov/pubmed/20670718 – in which the researchers make a case for 4 out of 5 in diagnosing celiac disease, potentially eliminating a biopsy if the other elements are there.

        Reply
      2. 4.1.2

        Cheryl

        “gluten challenge” – eat poison until the destruction of the body is so obvious that it tests to the satisfaction of the medical community.

        Now how does that fit with “first do no harm”?

        In which other disease are people expected to consume a known poison until they literally destroy a part of the body critical to life?

        What we really need is safer testing.

        Reply
        1. 4.1.2.1

          Val

          I’m struggling with this at the moment. I cut out gluten 2 months ago on the advice of a nutritionist then got cocky/curious and had a massive reaction to a piece of Indian bread I had with a take-away about 10 days ago. Took me over a week to recover and I cannot remember being in such pain before. Now I’m (obviously!) avoiding gluten but I am self-diagnosing. I don’t know if I have coeliac disease of just a big intolerance. I’m not sure how far I should take this… I get a bit scared when I read how far GlutenDude had to go to clear his kitchen, separate utensils, work surfaces etc…
          I know I certainly don’t want to reintroduce gluten in my diet just for the sake of satisfying some test criteria. Should I assume I’m coeliac?

          Reply
  5. 5

    Peter Olins, PhD

    The FDA is responsible for approving clinical diagnostic tests.
    Unfortunately, there seem to be companies willing to sell unapproved tests without showing what they are measuring or defining what the results mean.

    We all produce some levels of antibodies to a host of proteins, but this thought to be more an indication of EXPOSURE than intolerance. We all produce some levels of IgG antibody that reacts to gluten, but NO-ONE has shown that changes in this level have any relationship to any symptoms or any disease. There is actually some evidence of allergen-specific IgG levels going up as people develop TOLERANCE to allergens.

    If anyone could really develop a test for (non-celiac) gluten sensitivity, it would be a breakthrough for the field! Anyone who truly believed they had such a test would be under a moral obligation to publish their work. For the past few years it has been awfully quiet.

    One “doctor” I know has a thriving practice using unapproved tests for gluten sensitivity, and, “amazingly”, many of his patients test positive. Fortunately, he has plenty of “supplements” and ongoing therapy to offer…

    Reply
  6. 6

    Ardena Newton

    Is burning, red scalp an indicator of gluten sensitivity or celiac? Doctor is telling me its hormonal. Not sure I agree because since I have been on hormones have seen no change in burning scalp problem. Also some hair loss with it.

    Reply
    1. 6.1

      Gluten Dude

      Yes Ardena…it’s totally possible. I know of other celiacs who have had those exact symptoms.

      Reply
  7. 7

    Elly Cowley

    Your site is amazing, one of the only good coeliac related things in my life. Thank you for this support. It has inspired me to start my own blog to host rants, advice and gluten free food reviews in my local area – I feel better already :-)

    Greetings from over the pond in Newcastle UK!

    Reply
  8. 8

    Jane Szymanski

    Why is no one mentioning flatulence? I was diagnosed with Celiac Disease by biopsy and blood work over 5 years ago, I was not told really how to deal with it but to avoid wheat, rye and barley. I have had terrible flatulence ever since. Then, I read that at first, sometimes you are lactaid intolerant and have to introduce dairy slowly back in after Celiac diagnoses. Does anyone else have this problem?

    Reply
    1. 8.1

      Jennie

      Could be for the likelihood u r eating more veggies and fiber than before?

      Reply
  9. 9

    Liz

    I am in serious need of advice. I have thyroid disease and have been avoiding gluten for a couple of years now, but I have not gone totally GF – I’m sure there is exposure both in my kitchen and in some foods that have trace amount in it. I am still having digestion and weight gain problems (overweight). I was tested years ago for Celiac disease after a super strict diet where almost all of my carbs were cut and I felt better than I’d EVER felt in my life but the test came back negative, so I’ve just assumed I was “gluten sensitive” all this time. Now my husband and I are seeing suspicious symptoms in my daughter – frequent nausea, occasional vomiting, late onset of puberty, weight gain, fatigue, etc. – that has us thinking she might be Celiac. This is causing me to wonder if all along I’ve been celiac.

    We want to get her tested as soon as possible but I’m afraid to do it. If she really is celiac and she tests negative for it like I did, and if all along I too have had celiac disease but can’t prove it with the test, I don’t know how I can move forward with confidence.

    Is there a way to be fairly certain one does indeed have celiac disease, enough to put the issue to rest, especially in the mind of a 15 year old girl, but also for her mother and family? As many have stated before, this is a major lifestyle change and isn’t something one does to their diet “just in case”. Having four other children and a husband to feed, we need to be pretty certain that it’s celiac disease. Thanks!

    Reply
    1. 9.1

      bessie

      My blood work came back negative,but my biopsy came back positive. My doctor said that it takes awhile for it to show up in your blood. I have two aunts with Celiac also and one had a positive blood work and the other took over 10 test to finally get a positive. I also found out that you have to be eating gluten when the blood work is being done, which I was not(Doctor did not tell me this, kind of makes me wonder how much he knows about Celiac). If you feel better going gluten free, then thats what you should do. When people ask why, you dont have to defend yourself, just tell them you have a sensitivity to gluten. I am suggestive Celiac disease ( says the doctor, since my blood work was negative). I know a have full blown Celiac disease, I cant even function if gluten gets in my system. So thats what I tell people, I have celiac disease and they need to respect that and I dont care if they understand or not. It is not their body and they dont feel the pain. So I would get the blood work done and even if it comes back negative and she feels better gluten free then do it, the blood work is weird anyways and they still are having trouble with getting right results. Good Luck!

      Reply
  10. 10

    bessie

    When ever you accidently get gluten what do you take to help with the pain? Anybody have any suggestions on something that will ease the pain? I have tried alot of different things from pepto to tums….I just hate when I get sick and there is nothing that helps ease the pain.

    Reply
  11. 11

    John

    First of all, this is a great FAQ. Kudos to GD and all who worked to assemble it.

    I’d like to point out an interesting document that I think ought to be incorporated into the FAQ somehow: an apparently exhaustive online list of certified gluten-free products and the companies that make them. It covers products available in not just the USA but also many other countries.

    It comes from the Gluten-Free Certification Organization (GFCO), the internationally recognised NGO whose familiar GF-in-circle logo identifies a product as Certified Gluten-Free; i.e., they satisfy strict criteria of less than 10 parts-per-milion gluten (<10ppm). Gov't limits for GF status are generally <20ppm, which doesn't always suffice.

    To find it, click this link to the "Certified Directory" page on the GFCO site:

    http://www.gfco.org/certified-directory/certified-companies/

    This page has a link ("2015 GFCO Buyer & Distributor Guide") to the document.

    It's a 150-page pdf (at 19 MB, downloading might take a while on a slow connection) listing all sorts of GFCO-certified products. Not just foods, but also non-food items (toiletries, etc) intended for those with dermatological/etc symptoms. I can't absolutely confirm, but its sheer size suggests that this is intended as an exhaustive product list: a useful reference for newly-diagnosed patients and old veterans alike to discover items they might be missing out on.

    I'm not sure how often this list updates. With market churn, new products appear as older ones either get discontinued or no longer satisfy GFCO criteria. As of now, mid-March 2015, the current edition is dated January 2015; with the month being in the date, it's probably updated more than once a year, perhaps quarterly or semi-annually?

    Some might find the document unwieldy to navigate. But the webpage looks to be under further development with pull-down menus to eventually support searches on specific products/product types. For now the menus are only empty placeholders, with the database installation presumably to follow. It looks promising as a powerful GF product search tool. If and when this happens, updates will also hopefully be of a more dynamic, constantly-ongoing nature.

    One final note: the absence of a company from this document doesn't necessarily tell whether their products are unsafe, rather only that they lack GFCO certification. There are GFCO-certified products from companies that also provide non-GF products, while other companies might lack GFCO certification, but provide only GF products. The document lists the certified products that each company produces. One might encounter in the store an unlisted product even though the company itself that makes it is on the list. Chances are this product is non-GF; the label should be reviewed to confirm as always.

    Reply
    1. 11.1

      John

      A follow-up to my post from a year ago: I just visited the above link and the 2016 GFCO product catalogue is now available therein; looks to be a lot bigger than the 2015 edition: from 19MB to 23MB, from 150pp to 192pp, from 1417 brands to 1890, and from 23,500 products to 29,600.

      The searchable database I mentioned last time still seems to be under development.

      Reply
      1. 11.1.1

        Julie N

        Thanks for the link. I bookmarked it for review. :)

        Reply
  12. 12

    Ray

    I am trying to gain an understanding regarding Gluten, so new to this subject.

    I have found a confusing article that goes against current thinking.

    http://www.dailymail.co.uk/health/article-2632723/Gluten-DOESNT-cause-bloating-actually-little-known-FODMAPs-blame.html

    Hmm

    Reply
    1. 12.1

      Julie N

      I’m also new to this and trying to learn all I can. I’m going to check out this link. Thanks!

      Reply
  13. 13

    Susan B.

    I have been told by my doctor that I have “full blown” Celiac Disease. This, after many blood draws, a colonoscopy and two biopsy’s. I hear all the time, people stating that if they accidentally consume something that has gluten in it they are in a great amount of pain. I have never had any discomfort of pain, but had a lot of bloating.

    I have recently been diagnosed and the only advice my doctor and gastro dr. has given me is to not eat any Wheat, Rye, Oats, Grains, etc. and to ” Go on-line and learn about what and what not to eat”.

    There are a lot of great sites I have found, Thank God, and greatly appreciate all the people who have compiled all this information. Your information has helped me tremendously!!!!!

    This was a hard diagnosis to hear but I am determined to follow the new guidelines and I am feeling so much better and best of all the bloating has gone away!!!! Again thank you all, it felt like I was stranded out in the ocean with no help in sight.

    Reply

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