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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.

I Immediately Think Every Symptom Is Caused From Gluten...
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5 posts in this topic

I have been gluten free for about two years, and it has made a dramatic change in my life. (I won't get into all the symptoms and issues I had) I have five kids and they each have there own set of issues and I believe that most of their symptoms stem from gluten intolerance as well. I also have brothers and sisters that I believe have issues. I was never diagnosed celiac, so I think that is why I never completely take my kids off gluten. Our home is gluten free, but they eat lunches at school and so on. Does anyone else feel like they jump to gluten being the cause of symptoms?

My son came home from basketball practice tonight (12yrs) and said he could hardly run, because his body and head hurt so bad. He has many stomach issues that come and go and is sent home from school often for headaches. He does have many other unrelated issues, like a kp rash on his arms and face (but maybe they are all related) Dr's don't seem to worry, because he is overall a healthy child! My other son won't eat for days at a time because he feels like something is stuck in his throat (had throat study done and came back fine) My girls all have different issues as well.

Just thought I would see if anyone else has become obsessed with gluten symptoms?

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I don't think I became obsessed... I saw the symptoms more often in people but I could be right. Right?

I saw GI symptoms in 2/3 of my kids. I made them gluten-free and those symptoms have largely improved. I think the only way to know if your kids are celiac is to test them, and likewise the only way to know if they are non-celiac gluten interant is to follow the gluten-free diet strictly. Perhaps give it a try and you'll be able to stop wondering. :)

Best wishes to you and your five.

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I have one son with celiac and one without. My celiac son complained for a YEAR of not feeling well (fatigue, joint pain, etc.) and I assumed it was from gluten - somewhere in our gluten-free house. We restricted his diet even more (no processed foods that were not specifically gluten-free), no eating out, etc. etc. I was at the point were I was going to hire someone to come in to my kitchen and find the elusive gluten. Turns out he had lyme disease. Now I know better than to just assume it is the gluten.

My poor older son, I am constantly asking about his bathroom habits. He still gets tested every two years, but sometimes I feel we need to go in sooner. Mood swings, headaches, fatigue, etc. All PERFECTLY NORMAL for a 10 year old . . . but I still wonder.

Cara

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I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and only what they see on the surface. We were fortunate with our oldest son -- our primary care physician was in the early stages of TRULY learning about celiac when I took our 16-yr-old for his physical. He was 5'3", in the 10th percentile of his peers, was not growing, had delayed puberty, but no other symptoms (that we recognized at the time). My concern was the short stature (pituitary? thyroid? just the card he was dealt?). Our doc wanted to run blood work, but emphasized that he was ordering a celiac panel. Tests showed tTg of 70 (<20 negative), so endoscopy was ordered. The GI doc said visually everything looked normal -- but the biopsies came back positive. We immediately went gluten-free with him and he grew over 7 inches in less than two years!

In the last two weeks, our daughter has presented with itchy blisters on her legs that broke open, got progressively larger and more angry looking, and now look like open sores. Of course, our new doc (we moved last summer), says it may be impetigo. I insisted that she be tested for DH, but he wanted to give it a week of treatment and go from there. I said I didn't want to wait a week. So we are moving ahead with the antibiotics in case they are infected, and I take her back in in a few days for the skin biopsy. Personally, with our family history, I prefer to rule out celiac before we run the gamut of every other condition it COULD BE! He was not as convinced, obviously, but reluctantly agreed to what I wanted.

That's a long story just to say "go with your gut!" Even with just a little bit of research on celiac disease, it's hard to not to see every symptom as related. I share your obsession Happy!

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I am taking my oldest son to his dr tomorrow. I am going to have them run a cbc and a celliac panel. He comes home constantly with headaches and bellyaches. He is constantly in the bathroom, and says its normal bm, but i no it's not... He also has had little bumps on his arms and face for the longest time. It may be nothing but I need to know!!!

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • 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? 
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