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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.
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Still Feeling Weird
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Hey guys. So it has been 7 months going gluten free. I was just wondering, is it normal for me to be feeling still kind of out of it a lot and generally feel tired and unmotivated most of the time. I have certainly improved a lot but I still feel as if I am living in a dream and nothing around me is real. Also I seem to be suffering still from depression and anxiety related issues that I think are gluten caused. I have cut out all sources of gluten and am very careful about cross contamination. My stools still don't seem right and are pretty foul some days still even when I am certain that I have not ingested gluten. The rashes that really plagued me in the past which I think were dermatitis herpetiformis are completely gone for the most part now but the problem is none of my celiac tests were positive for it and the biopsy for dermatitis herpetiformis turned out negative as well. Also, I would get a burning sensation constantly around my eyes and severe anxiety/feeling like my head was about to explode feeling that has disappeared after going gluten free. I am very certain though I have celiac or at least a gluten senstivity as I have improved drastically from not ingesting this, although I have not recovered fully. I would say that I am maybe 70 percent of normal now. Also, my thyroid levels seem to have improved. Prior to going gluten free my TSH was at 3.67. After testing again 5 months gluten free that level has since gone down to 2.6. I just don't know why I continue to have my most troubling symptom though which is the depression and feeling like nothing around you is real. Has anyone had a similar experience and if so how long did it take to resolve? Is it normal for people to still have foul stool 7 months later? Again, I have been incredibly careful in what I eat, pretty much sticking to chicken, eggs, potatoes, beans, corn and a variety of vegetables. I have also cut out all dairy. Any advice is greatly appreciated!

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I understand what you're describing--and I believe what you're experiencing is the result of being deficient in Vitamin E. That weird feeling that you're describing is referred to as problems with "proprioception." Please take a look at the symptoms of Vitamin E deficiency:

http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

Do the other symptoms sound familiar? I suffered from these symptoms for many years, as I was not diagnosed with celiac until I was 47.

Also, it took 18 months of strictly following a gluten-free diet before my stools finally became "normal." The diarrhea slowly occurred less frequently, and my stools became firmer until, at 18 months, they returned to normal. It just takes time for the body to heal.

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Oh! Surprised to see that proprioception wasn't what I thought it was!

http://www.google.com/search?q=proprioception&btnG=Search&hl=en&gl=US

I thought the dream aspect was in being unsure of the reality, like during a dream suddenly having a "wait ...am I just dreaming?" thought, rather than a movement issue.

Anyway Grodylocks, are you soy-free as well? Looks like you could be, from that list of unprocessed foods. I felt like my brain came alive again at 2wks soy-free. Just regret doing doing soy-free tests previously that were way too short, at a week or less.

So if I were you I'd want to try soy-free for at least 2wks.

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Oh! Surprised to see that proprioception wasn't what I thought it was!

http://www.google.com/search?q=proprioception&btnG=Search&hl=en&gl=US

I thought the dream aspect was in being unsure of the reality, like during a dream suddenly having a "wait ...am I just dreaming?" thought, rather than a movement issue.

Anyway Grodylocks, are you soy-free as well? Looks like you could be, from that list of unprocessed foods. I felt like my brain came alive again at 2wks soy-free. Just regret doing doing soy-free tests previously that were way too short, at a week or less.

So if I were you I'd want to try soy-free for at least 2wks.

I do not seem to notice a difference with soy. I have taken this out for a few days before and then reintroduced it and did not really notice a difference. I have however noticed a difference not chewing nicorette gum as I was chewing that stuff for over 2 years. I've only been off that for a month or so but I have noticed some improvement since going off that. The vitamin E stuff doesn't sound at all like me, nor does the condition you described. What I go through is Depersonalization, a feeling of being unattached from my surroundings or that my surroundings arent real. It's a very difficult sensation to describe however it may be a separate issue from gluten entirely. I've also noticed a loss of sex drive as well. I don't really get diarrhea just kind of very odorous stool that still doesnt look quite right but I guess its better than it was before. I'm just worried I will permanently feel like crap the rest of my life. I just need some hope I guess.

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I do not seem to notice a difference with soy. I have taken this out for a few days before and then reintroduced it and did not really notice a difference.

...

I did trials of a few days multiple times too, but didn't notice anything and went back to it. I don't even remember exactly why I tried again but this time for 2 full wks. Probably had run out of things to try, again.

Believe me, I was pretty surprised when around day 11 I started noticing stupendous mental changes.

Ahhhhh looked up Depersonalization. Should've figured that what I called "living in 3rd person" had a real name.

Casein seems to do that to me. Found that dairy-cultured probiotics needed to be avoided via that symptom.

Any chance you're taking a regular probiotic? I have to get veg formula (same price, PB8 brand).

I still suggest trying a longer soy-free trial.

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So you suffered depersonalization while you were sick too?

I did trials of a few days multiple times too, but didn't notice anything and went back to it. I don't even remember exactly why I tried again but this time for 2 full wks. Probably had run out of things to try, again.

Believe me, I was pretty surprised when around day 11 I started noticing stupendous mental changes.

Ahhhhh looked up Depersonalization. Should've figured that what I called "living in 3rd person" had a real name.

Casein seems to do that to me. Found that dairy-cultured probiotics needed to be avoided via that symptom.

Any chance you're taking a regular probiotic? I have to get veg formula (same price, PB8 brand).

I still suggest trying a longer soy-free trial.

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Ohhhh yeah .. ...just didn't know its name.

If you take probiotics, did you check for non-dairy grown? As a process it doesn't get listed as an ingredient.

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Hey guys. So it has been 7 months going gluten free. I was just wondering, is it normal for me to be feeling still kind of out of it a lot and generally feel tired and unmotivated most of the time. I have certainly improved a lot but I still feel as if I am living in a dream and nothing around me is real. Also I seem to be suffering still from depression and anxiety related issues that I think are gluten caused. I have cut out all sources of gluten and am very careful about cross contamination. My stools still don't seem right and are pretty foul some days still even when I am certain that I have not ingested gluten. The rashes that really plagued me in the past which I think were dermatitis herpetiformis are completely gone for the most part now but the problem is none of my celiac tests were positive for it and the biopsy for dermatitis herpetiformis turned out negative as well. Also, I would get a burning sensation constantly around my eyes and severe anxiety/feeling like my head was about to explode feeling that has disappeared after going gluten free. I am very certain though I have celiac or at least a gluten senstivity as I have improved drastically from not ingesting this, although I have not recovered fully. I would say that I am maybe 70 percent of normal now. Also, my thyroid levels seem to have improved. Prior to going gluten free my TSH was at 3.67. After testing again 5 months gluten free that level has since gone down to 2.6. I just don't know why I continue to have my most troubling symptom though which is the depression and feeling like nothing around you is real. Has anyone had a similar experience and if so how long did it take to resolve? Is it normal for people to still have foul stool 7 months later? Again, I have been incredibly careful in what I eat, pretty much sticking to chicken, eggs, potatoes, beans, corn and a variety of vegetables. I have also cut out all dairy. Any advice is greatly appreciated!

Adding to what others have offered, I might ask the doctor to check your actual thyroid hormones and check for thyroid antibodies. TSH can fluctuate a lot, and it doesn't tell you all that you need to know about your thyroid.

Food sensitivities and nutritional deficiencies are the next thing to check out. Have you considered trying a starch free diet? Might help if you have unbalanced gut flora.

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I had a full thyroid panel which turned out fine. Also have had B12, folate, Vitamin D, and Magnesium levels checked, all were fine. I have tested negative for the celiac antibody test. I have symptoms that could be attributed to celiac though, and a weird rash that resembles dermatitis herpetiformis which has dissapeared since going gluten free. However, biopsy of my rash when I had a minor outbreak showed negative results. What exactly is a starch free diet?

Adding to what others have offered, I might ask the doctor to check your actual thyroid hormones and check for thyroid antibodies. TSH can fluctuate a lot, and it doesn't tell you all that you need to know about your thyroid.

Food sensitivities and nutritional deficiencies are the next thing to check out. Have you considered trying a starch free diet? Might help if you have unbalanced gut flora.

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I had a full thyroid panel which turned out fine. Also have had B12, folate, Vitamin D, and Magnesium levels checked, all were fine. I have tested negative for the celiac antibody test. I have symptoms that could be attributed to celiac though, and a weird rash that resembles dermatitis herpetiformis which has dissapeared since going gluten free. However, biopsy of my rash when I had a minor outbreak showed negative results. What exactly is a starch free diet?

Basically a starch free diet is one free of grains and starchy vegetables. More specifically, the Specific Carbohydrate Diet or GAPS diet do without sugars, dairy, grains, starchy vegetables, most beans (except navy and black beans) based on the kind of sugars they contain. The diets are designed to starve out bad bacteria and give the good ones a chance to repopulate.

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