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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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zebaldwin    1

I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

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love2travel    396

I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

That sounds sort of dangerous! But at the same time I can sort of relate. When I went on my gluten challenge for three months I, too, felt better eating gluten than not. I have more diarrhea now (when I do not have enough fibre) than then (never). I have been off gluten now out of necessity (positive biopsies) for nearly five months. Not feeling any better at all but then again did not get sick when on gluten anyway. I am hoping that some other things I did not associate with celiac will disappear such as insomnia and brain fog that I had chalked up to fibromyalgia.

If you do have celiac it is not doing your body any good returning to gluten. Even if you do feel temporarily better just imagine what is going on inside! This could potentially create more problems in your future. That is downright frightening!

My chronic pain management specialist put me on Zinc, B12 sublingual, B complex, megadose of Magnesium Glycinate in addition to 5,000 mg Vitamin D3 capsules as I have fibromyalgia and lots of back pain in addition to celiac disease.

Keep in mind that there is a fairly incidence of false negatives in both bloodwork and biopsies. If being gluten-free was helping that is your answer. Keep in mind it can take up to 2-3 years for some people to heal.

Please do not give up hope! :)

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zebaldwin    1

Well the problem is that I felt better going OFF the diet...which is why I am so confused.

I guess my bottom line question is could it take 6 weeks OFF the diet for the gluten to start affecting me again?

You said that this sounds "dangerous" a few times...what exactly do you mean by that?

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love2travel    396

Well the problem is that I felt better going OFF the diet...which is why I am so confused.

I guess my bottom line question is could it take 6 weeks OFF the diet for the gluten to start affecting me again?

You said that this sounds "dangerous" a few times...what exactly do you mean by that?

Sorry to be confusing! I felt it was dangerous to go off the gluten-free diet just because of what can go on inside a gluten intolerant or celiac person. I have recently read on here somewhere that a person went back on gluten for a time but had to be taking to the ER because of severe pain or illness resulting from the gluten. But then I put myself at risk for further damage by going back on gluten prior to my biopsies. Sigh...

The part I could relate to is I also felt better eating gluten for three months and you felt better after consuming it for six weeks then feeling worse again. It may have taken that long to feel the effects of eaten gluten - it varies drastically from person to person. Sorry to be of no help. I am just concerned with your going back on a test trial for gluten but feel better that you are off it again.

Have you had further indications of celiac or gluten intolerance? Have you had anything done other than bloodwork which was negative?

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zebaldwin    1

Thanks love2travel.

I have only had bloodwork done. If I wanted to get a biopsy or something, is 6 weeks eating gluten enough or no?

Just don't know what to do next :/

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I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

Hi, I remember your posts from when you were trying to figure out if you had a gluten intolerance or not. With your symptoms including brain fog and fatigue I would think stopping the Vitamin D is a huge contributing factor. It is possible that it took 6 weeks before your body stopped absorbign vitamins again and you started to feel bad from the low vitamin D when you stopped the supplement. Have you had your vitamin D and other vitamin levels (Iron, potassium, B12, etc) checked recently? It is possible that you are just in the begining stages of developing celiac and the tests didn't pick anything up yet. It's also possible that you are in the 30% that test false negative. In order to redo the tests you should be on a full gluten diet (the equivilant of 3 slices of bread a day) for 3 months. Even then the results could be negative. With your digestive issues however you may be able to push to get a biopsy despite negative bloodwork.

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zebaldwin    1

Hi, I remember your posts from when you were trying to figure out if you had a gluten intolerance or not. With your symptoms including brain fog and fatigue I would think stopping the Vitamin D is a huge contributing factor. It is possible that it took 6 weeks before your body stopped absorbign vitamins again and you started to feel bad from the low vitamin D when you stopped the supplement. Have you had your vitamin D and other vitamin levels (Iron, potassium, B12, etc) checked recently? It is possible that you are just in the begining stages of developing celiac and the tests didn't pick anything up yet. It's also possible that you are in the 30% that test false negative. In order to redo the tests you should be on a full gluten diet (the equivilant of 3 slices of bread a day) for 3 months. Even then the results could be negative. With your digestive issues however you may be able to push to get a biopsy despite negative bloodwork.

Thanks for the reply!

Ya, the only things that really changed were the vitamin D and the diet...got a new script for the D, and trying to stick to a better diet. For the biopsy, do I still need to be on gluten for 3 months? (ive gotten the bloodwork done twice by 2 different doctors while eating gluten, both negative)

Thanks again!

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Thanks for the reply!

Ya, the only things that really changed were the vitamin D and the diet...got a new script for the D, and trying to stick to a better diet. For the biopsy, do I still need to be on gluten for 3 months? (ive gotten the bloodwork done twice by 2 different doctors while eating gluten, both negative)

Thanks again!

Yes you would need to be on gluten for 3 months prior to biopsy since you went off of it for so long. Did you get a copy of the blood tests they did? Sorry if you already answered that in another thread. I don't recall. You should make sure they did the complete blood panel and not just 1 or 2 tests. Also make sure the results were interpreted correctly.

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nora_n    60

I was off gluten for seven months and then one morning I woke up and was not so terribly fatigued anymore.

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