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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Normal Biopsy - Still Think It Could Be Celiac
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5 posts in this topic

I got my biopsy results the other day, and they were normal (6 samples, normal). Other than a mild Schatzki ring and sliding hiatal hernia, the doc said everything was normal and nothing would explain any symptom other than a little heartburn. I, however, am not convinced. I've stopped eating gluten and will give it a month or two, and see how many of my symptoms resolve. I also plan on getting a 2nd opinion from another GI. But, at the same time, I'm concerned that if the GI is right and I don't have celiac, that I could be missing the real source of my problems.

So, I have 2 questions:

1) Is there anything else that can cause B12 deficiency?

As far as I know, there's not eating meat or dairy (which is definitely not the case for me), Grave's disease (I'm overweight, not under weight so I don't think hyperactive thyroid is my deal), and pernicious anemia/lack of intrinsic factor (my primary has ordered a test for intrinsic factor in February along with follow-up B12, so we'll see if that's the case pretty soon). Is there anything else that's a possible cause? My B12 was at about 300, and that's with me periodically (not routinely at all) taking a B-complex vitamin supplement.

2) When you get glutened, generally how long is the delay between eating gluten and a reaction?

I've been gluten free for 8 days so far. I haven't had my most common symptom, which is really extreme bloating, all week - that is until last night after dinner when I blew up like the staypuff marsmallow girl. I went through everything I ate all day yesterday and I'm sure I didn't any gluten. Then I realized that the day before I did totally gluten myself. I had one of those green Superfood Odwallas for breakfast and didn't check the label at all- like a total bonehead, I thought it's just juice! no gluten to worry about. BUT, that was about 36 hours before I got the bloating. So, is it possible that the Odwalla caused my bloating? Or is this all a coincidence? Either way I'm going to stay off gluten and in another week or so purposely test myself with something gluteny.

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Perhaps there was wheatgrass or barley grass in your Odwalla? Most people do not react, but some do.

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Perhaps there was wheatgrass or barley grass in your Odwalla? Most people do not react, but some do.

Yes, there was wheat grass, barley grass, and wheat sprouts in the Odwalla. Like I said, it was a bonehead thing not to check.

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My understanding is it can take up to a few days to react to gluten. Also you may not have celiac, you could just have non-celiac gluten intolerance. Same symptoms, negative blood and biopsy results.

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Low B12 can (as far as I know) be caused be a gluten intolerance, not just celiac. Also, H. pylori, infections and parasite (liketapeworm and Giardia lamblia) can cause low B12. I've also heard that people who take a lot of stomach antacids can have such reduced stomach acid that it makes B12 difficult to extract from foods.

I would react to gluten with a stomach ache within the hour, but I also ended up bloated in the evenings even if I ingested gluten hours earlier.

Hope you feel better.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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