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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.

Feeling Worse After Feeling Better
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4 posts in this topic

Hi Everyone,

I've been reading the forum a lot since this summer when I got the suspicion that I have celiac. It's always helped a lot to read about stories similar to mine. Thank you for that!

My story:

I've had an eczema type of rash on my hands for 4 years and that is what made me look for answers for the last few years. The rash actually started at the same time as an occasionnal bloating and some pain on the left side of my belly button. Doctors didn't say anything helpful and the mild symptoms didn't bother me much for the first two years. Then my rash got worse and I got into a long depression which I thought was due to me moving abroad and being lonely. In the last year or so additional symtoms arised, like UTIs and tonsil inflammation which both would go away and come back often. I've had trouble getting up in the mornings for 6 years now and I used to sleep 9-10 hours and wake up as a zombie.

So in the summer I read about celiacs and realized that it might be the answer for all my symptoms. I went through testing. Everything came back negative but I was already gluten free when tests were done and my health was improving. I definitely have a reaction to gluten. My UTI comes back every time I accidentaly eat it and I have GI symptoms, too that I didn't use to have before going gluten free or at least I didn't notice them...

I've been gluten free for 4 months and at the beginning everything seemed fine. Eventually. I got rid of lactose, too because it seemed to be bothering me. Exactly a month ago I bought some muffins that were on the gluten free shelf in the supermarket. After eating all 6 of them I realized they were made of wheat flour. I got my UTI symptoms the next they (with blood in my pee) and they lasted for about two weeks. My problem is that since the glutening I don't seem to get back to my improved state. Even though the UTI is gone, I am having GI symtops, mostly bloating and pain on the left side of my stomach and I'm sleeping a lot again and don't have much energy. Before the glutening I've been eating lactose again and now I'm trying to get rid of it at least for a while and I'm also not sure whether grains are good for me.

Anyways, I would appreciate any ideas on my situation or even just supporting words because the last month have been really difficult waiting for all the glutening symptoms to go away. Do you think it's possible that the glutening brought back my lactose intolerance? Does it happen to any of you, too?

Thanks so much for taking the time to answer!

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Just giving you a big hug and wishing you well.It does take a while to bounce back, especially after such a large amount. Even much smaller amount made me sick for a few days at a time, so what you are experiencing is very reasonable.

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A big hug along with a couple thoughts:

Some of us become more sensitive to minor amounts of gluten as time gluten-free increases - is it possible you could be getting minute amounts of gluten from cc at home or while dining out - thus keeping the symptoms of the muffin mishap going?

If you improved by removing lactose when first gluten-free, I'd remove it again now - give the gluten-free/lactose free time before removing more items.

There are many up and downs while your digestive system recovers - you are not alone - it is possible that you have become intolerant of something else about the same time as your accidental glutening - should your resurgence of symptoms remain after another month or so it may be time to look at other intolerances.

If you haven't kept a food/symptom log - it would be a very good idea to start one - it is the first step in tracking other possible problems - some other food problem may become obvious as you track your symptoms.

Hang in there - the good news is you improved once - time will get you there again :)

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Thanks so much to both of you for the replies!! It felt really good to read them!

I don't eat out but am living with roommates who do eat gluten and although I'm very careful not to get cc'd, there is a chance it's been happening... I'm now 4 days lactose free and I'm seeing some improvement. I'm also thinking about taking probiotics and something that could help with the inflammation issues. I also keep a food log. So I guess it's all about patience now.. :)

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