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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.

Already Seeing Improvements
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6 posts in this topic

My oldest son who is 10.5 years old has had repeated blood work for celiac that is negative. He had a scope/biopsy last month that was negative also. Based on his past history and current issues of reccurent gas/bloating, abdominal pain, slow/stalled growth, and irregularity/constipation, we have decided to give gluten free a try for a good three months.

First week I noticed him becoming more moody. However he has IgE allergies and does allergy shots for these. When his allergy load is high he is moody as well. So it's hard to tell if that is related or not. He also had some issues with insomnia. Insomnia has resolved and the moodiness is better but still there some due to allergies. The biggest thing I have noticed is that he is having more regular bowel movements as he has stated that he is going a lot more. He also hasn't complained of any gas/bloating recently either. It wasn't abnormal for him to go up to four days before going to the bathroom. I haven't changed anything except removing gluten. He has a follow up appointment with the GI on Sept. 15th. I know he won't get a diagnosis of celiac but I'm leaning on the possibility that he is non celiac gluten intolerent. Now lets hope he takes off growing like my 6 year old has.

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Best of luck! Yes, I hope he takes off growing too. My 11 yr old almost 12 :) had a "weak" positive as the pediatrician put it...and wants us to see the ped. gastro. Anyway, I decided to remove gluten immediately and he too has seen improvement...3 wks into it and he's muscle pain free. I did notice changes in his bowels too...as I think he was going more. He told me at first he was "having issues" in the bathroom. I am thinking that his body is trying to regulate and figure out these changes placed upon it. I think he's doing great though...I even notice his face looks so much healthier. No more dark circles under the eyes!!

I know everyone worries about that "diagnosis" for school. That if you don't get the diagnosis then there could be issues with school. I wonder though ...why wouldn't a dr label a child as gluten intolerant if celiac isn't 100% confirmed. If the family knows gluten was an issue....I'm thinking then I would hope a doctor would send a note to the school saying said child needs to remain on a gluten free diet and accomidations must be taken for him. Why is it that it's always just "we need that diagnosis of celiac."...when why couldn't it also just be "gluten intolerant" in cases that the child hasn't been officially diagnosed with celiac. Hmmm....

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I don't know either. Technically speaking my youngest son doesn't have a diagnosis as of yet, going to get though(he had a positive tTg and resounding response to the diet and horrible 3 day gluten challenge), and his allergist wrote a note to the school of the need to be on the diet. The school took it very seriouslly and I have not had any issues. As for my oldest I have nothing and didn't say anything to the school as of yet. He is in 5th grade so I think for now he can manage alright. I'll be discussing things when he goes back to the GI. He and I talked about it yesterday. He is already looking forward to Dec. so he can eat pizza. I asked him what he would do if he had negative effects when he went back to eating gluten even with all his testing negative. He did ponder awhile and said it would be hard but could commit even without a diagnosis. I told him that it might suck now to give up things he enjoys, but worth it in the end to not have belly aches, to maybe grow some and lower the risk of further issues down the road. Knowledge is power. I'm hoping I see some improvement in his allergies, but not too hopeful on that front.

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Well, we went to our follow up appointment. He has had a 2lb weight gain since around the end of July when we seen her last! I find that utterly amazing since he barely gains maybe 2-4lbs in a whole year. Actually he hasen't gained any at all this year till this. Usually for him when he does gain weight he also grows taller. I'm so hopeful! Is it possible to see improvements just after three weeks? The doc also thought his color looked better, more pink. We will be following up in Jan. after his gluten challenge to review how things go. She leaning on that he is gluten intolerent. There was one thing I disagreed with her is that she wanted to find out his "tolerence" to see if he was able to have a cheat once and a while.(She didn't advocate this for the diagnosed celiac) I told her that it was all or nothing!! I mentioned this to my husband and he even agreed with me. This is so helping me realize that I made the right decision.

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Well, it had been 3.5 months, almost 4, since my oldest son went gluten free. Here are some of the improvements we have seen: weight gain of around 6 lbs., slowly starting to grow in height, increase in shoe size, bowel movements regular going at least every day to every other day and no more stomach aches/bloating/constipation.

So at the beginning of this I told him that we would reintroduce gluten after Christmas. Well, we did, and suprisingly he didn't get a horrible reaction. I do believe he had some symptoms, but were mild. Things he did experience were stomach ache, headache and some moodiness(not sure if gluten or just lack of sleep). He ate a total of 6 doughnut holes, three doughnuts, some bread sticks, 1/2 pizza, and some granola bars. This was over the course of several days.

I asked him what he would like to do today because school is starting back tomorrow. He told me he is probably going to stay gluten free.

I don't believe the 6+ lb weight gain is a coincidence at all. Some could argue that it was just his time to take off, but I don't think so. I just thought I would share an update...

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So glad to hear everything is going well with your son!

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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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