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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.

Symptoms Went And Then Returned
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6 posts in this topic

Hello all. I was diagnosed by biopsy in October 2010. I have been gluten free since then. After going gluten free I experienced significant vertigo and dizziness, that went too. Everything was going along marvellously and I developed a rather bad cold about a week ago. The cold seems to have gone, though I am now, again, extremely fatigued, feeling dizzy, headaches, slight vertigo, pretty much all the symptoms I had before diagnosis (and which continued for a couple of months).

Is it to be expected that these symptoms will return now and again until the gluten is entirely out of my system? I can't bear the thought of going back to where I was late last year; I couldn't even work then and I'm frightened that it's 'all come back'. I am pretty strict with my diet, but maybe some gluten accidentally got in. If it did and it was a small bit, would it make me feel this bad again?

Thank you for listening and I look forward to hearing from you.

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Hello all. I was diagnosed by biopsy in October 2010. I have been gluten free since then. After going gluten free I experienced significant vertigo and dizziness, that went too. Everything was going along marvellously and I developed a rather bad cold about a week ago. The cold seems to have gone, though I am now, again, extremely fatigued, feeling dizzy, headaches, slight vertigo, pretty much all the symptoms I had before diagnosis (and which continued for a couple of months).

Is it to be expected that these symptoms will return now and again until the gluten is entirely out of my system? I can't bear the thought of going back to where I was late last year; I couldn't even work then and I'm frightened that it's 'all come back'. I am pretty strict with my diet, but maybe some gluten accidentally got in. If it did and it was a small bit, would it make me feel this bad again?

Thank you for listening and I look forward to hearing from you.

If some of your symptoms are coming back I think it could mean you might be getting a little gluten somewhere. Sounds like your body is trying to tell you something. We tend to get more sensitive to gluten when it's out of our diets for a while. You might be getting trace amounts and not know it. I would recheck all your vitamins (vitamins could have barley in them and still claim they are gluten free), medicines, and even processed gluten free foods can have trace amounts of gluten.

Also, if you haven't started one already, a food journal is really helpful. I would start documenting your reactions along with the foods your eating. What helped me is going on a wholefoods diet( completely natural gluten free foods -fresh meats, veggies and fruit and then when I felt better I would add an item to my diet once a week. I know it's a pain, but since sometimes we don't react right away and it's hard to tell where we are getting the gluten from. I now know I react the next day. You'll start to see a pattern.

Keep reading these forums. I don't think I would have got better if it wasn't for this forum. Everyone is so helpful and they know so much more then any of the doctors do. And just because something says it's gluten free doesn't always mean it's gluten free. I learned this the hard way. When calling companies always ask if they are made on the same lines that gluten products are made on. I can't eat any products that are made on shared lines. My reactions come right back. Hang in there!

I hope you are feeling better soon! :)

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Hi there, thanks so much for your reply. It's talked me off the ledge as it were! I think I got a bit 'cocky' and started feeling great and then buying loads of ready made meals that professed to be gluten free but were full of additives and preseratives. I felt my best when I was eating plain food.

Can you recommend vitamin companies that are completely trustworthy? I live in England, but I'm sure most people can ship overseas.

Thanks again, these links from the forum make me get a grip!

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Was there anything you took for the cold or ate or drank when you were sick that you weren't before? Also as the previous poster stated we can become more senstive to trace amounts after we have been gluten free for a while.

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Was there anything you took for the cold or ate or drank when you were sick that you weren't before? Also as the previous poster stated we can become more senstive to trace amounts after we have been gluten free for a while.

Hi there, no I just took paracetamol. Looking back, I was so excited about the ability to buy gluten free products, that I think I just stuffed myself with all the crisps, cakes, curries etc that said they were gluten free but were full of additives. I'm finding it a bit hard I guess to really adjust my eating lifestyle and I need to eat plain food. It's a huge learning curve, but I'm so determined to be well that I'll do it. Thank you for taking the time to reply.

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Hi there, thanks so much for your reply. It's talked me off the ledge as it were! I think I got a bit 'cocky' and started feeling great and then buying loads of ready made meals that professed to be gluten free but were full of additives and preseratives. I felt my best when I was eating plain food.

Can you recommend vitamin companies that are completely trustworthy? I live in England, but I'm sure most people can ship overseas.

Thanks again, these links from the forum make me get a grip!

Hi Katrina!

I used to be the biggest processing food queen before going gluten free, so it was a big adjustment for me to change my ways. ;) It really is a huge lifestyle change, but it's so worth it. :)

Here are a few vitamins that I'm taking. I'm doing really good on them.

GNC Ultra Women's Active Multi vitamin - I know you could buy these on line. I called the company a few months ago and asked about gluten, cross contamination and testing. They reassured me that they couldn't place a gluten free label on it if the product was made on shared lines and they do test for gluten. It made me feel better. :)

Vitafusion Gummy Vitamins - Vitamin C 250 (Target has this brand or you could buy them on-line) - This company has no gluten at all in their facility and that's a huge plus!

Vitafusion Gummy Vitamins - Calcium 500 with vitamin D 1,000

I also heard good things about Kirkman Labs. I haven't taken any yet, but I just ordered folic acid from them. They also don't have any gluten in their facility and they do test for gluten! Yay! :)

Good Luck and I hope you feel better soon! :)

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    • 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.  
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      I have not. I'll talk to my doctor about it
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