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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.

Almost A Year On Diet And No Results
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32 posts in this topic

Hello,

I have been on gluten free/diary free diet for almost a year now. The only positive effect that I see is the lack of stomach issues but it may be related just to the healthy food I'm eating. Which right now is: apples/tuna/wheatgrass(gluten free)/chicken/eggs. These all the only things I eat. Anyway long story short I still have perioral dermatitis/acne and besides that I don't feel really well. Is there any possibility I have been misdiagnosed?

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How were you diagnosed?

Also, how have you determined that the wheatgrass you are eating is gluten-free? Is it independently certfied as gluten-free? There could easily be enough gluten contamination in wheatgrass to keep you from recovering.

Also, diets that severely limited often lead to deficiencies that can keep you from feeling well.

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First you need to drop the wheatgrass. Neither it nor barley grass is really safe.

If that is all you are now eating you are most likely lacking nutrients also. You may want to ask your doctor to refer you to a nutritionist to help guide you into a more rounded diet.

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Hello,

I have been on gluten free/diary free diet for almost a year now. The only positive effect that I see is the lack of stomach issues but it may be related just to the healthy food I'm eating. Which right now is: apples/tuna/wheatgrass(gluten free)/chicken/eggs. These all the only things I eat. Anyway long story short I still have perioral dermatitis/acne and besides that I don't feel really well. Is there any possibility I have been misdiagnosed?

Hang in there! I am 2 weeks shy of a year on a gluten-free diet myself. I have had all kinds of crazy things to deal with in this last year and have been to the doc too many times trying to figure out if there is anything else wrong. Besides a bulged disc in my back they have found really nothing to speak of. I can't make sense of it either.

I would assume to dx was good. It could be that you just need more time. It has only been recently that I ahve been able to eat gums like xanthan again. I still cannot eat dairy without a lactose supplement. How does your stomach feel....any burning? Where are your vit levels? It's incredible how much nutrients had have had to feed back body to get my life back.

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Hello,

I had a biopsy - damaged villi - 2 Marsh scale. As for the wheatgrass sorry my translator returned the wrong name -> I'm eating buckwheat not wheatgrass. The box says it is 100% gluten free.

As for vitamins levels it is hard to say because such tests are very expansive but I had D3 vit testes it is ok. Same for B12 right now. My blood results are ok.

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Where are the vegetables in your diet?

I usually follow the Specific Carbohydrate Diet and it helps a lot with how I feel, my asthma, and my perioral dermatitis/rosacea. http://breakingtheviciouscycle.info

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@Skylark: I found out that by eating something different my acne increases. Plus after some vegetables I have gas and stomach issues. Same for fruits like grapes or water melons.

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You may have fructose malabsorption. Grapes, watermelon, and some vegetables are high in fructose. See if you can tolerate low fructose vegetables like zucchini, spinach, chard, and butternut squash. :)

http://www.livestrong.com/article/534864-nutrition-guide-for-fructose-malabsorption/

With Marsh 2 and your stomach symptoms going away gluten-free there isn't much doubt about celiac.

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@Skylark: well I was thinking about it but few things are not really right. Like I should be able to eat bananas but even after eating small amount of it I feel terrible and my skin breaks out. No such problems with apples - which are considered high in fructose. So what is going on?

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I think your best bet is to get further testing for other food intolerances and allergy tests may be of use as well. I had no idea that something such as oranges for example bothered me, but you'd be suprised what all you can learn about yourself. For a long time even though I was gluten free, I was still getting sick and having various symptoms without discovery the reason. A lot of times there are other things which may irriate or bother you. I have recently taken the (Company Name Removed - They Spammed This Forum and are Banned) test which tests for food intolerances, molds, chemicals, and other additives. It really helped me realize what else could be bothering me and after elimination of certain foods or reducing how often I eat them, and exchanging them for other things I found myself feeling even better than before. If this test is too expensive I'm sure there are other ways to test for food intolerances. I personally know that green beans bother me slightly, etc. and determining whether or not you have a problem with something specific such as sucrose etc. its probably best to get a really excellent test, which tests a multitude of areas.

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Hello,

Well I have already spent like a ton of money on allergic tests etc. and appending to them I have no food allergies. I have allergy to dust and that is all. After all those years jumping from one doctor to another, trying different diets - all of this this became really tiring :(

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@Skylark: well I was thinking about it but few things are not really right. Like I should be able to eat bananas but even after eating small amount of it I feel terrible and my skin breaks out. No such problems with apples - which are considered high in fructose. So what is going on?

This could possibly help address the issue http://www.highonhealth.org/can-bananas-give-you-acne/

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Hello,

Well I have already spent like a ton of money on allergic tests etc. and appending to them I have no food allergies. I have allergy to dust and that is all. After all those years jumping from one doctor to another, trying different diets - all of this this became really tiring :(

Intolerances wouldn't show up on allergy tests.

You do realize most of the foods on your safe list are low salicylate??? That might be a hint.

There's a high correlation between Celiac/skin conditions and salicylate sensitivity.

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I think that you will need to start a food/symptom journal. Try eliminating things which might be a problem and adding things which should be safe. Only make one change per week as it can take awhile to notice symptoms. Something in your diet might be contaminated, or you could be having problems from lack of nutrients due to lack of variety. The complete lack of vegetables seems like a problem to me, especially green veggies. I'd try to get some of those added first. Some of us are more sensitive to cc than others. It takes some of us quite awhile to figure out a safe diet. Stick with it and be patient. It will be worth the effort.

Also, do you sort your buckwheat? I have found gluten grains in my 100% gluten free grains before. Now I sort and wash first.

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@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

@pricklypear1971:

>You do realize most of the foods on your safe list are low salicylate

Appending to the fruit table - apples are moderate/low in salicylates. And Bananas have negligible amounts. Sorry, but this does not suit my symptoms at all.

@AVR1962: the moral of this story was there is no proven connection between bananas and acne (?) or I am missing the point.

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@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

@pricklypear1971:

>You do realize most of the foods on your safe list are low salicylate

Appending to the fruit table - apples are moderate/low in salicylates. And Bananas have negligible amounts. Sorry, but this does not suit my symptoms at all.

@AVR1962: the moral of this story was there is no proven connection between bananas and acne (?) or I am missing the point.

Yes, it does since they are cumulative. Sals are tricky things. I'm not saying it IS salicylates but it's something to consider. Some people are sensitive to one sal source but not another.

Sorry I bothered you, won't do it again.

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@pricklypear1971: hey thanks for help I really mean it, I didn't want to sound harsh or something. If I did I'm sorry :(

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@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

I'm not sure what you didn't understand about my post:

Also, do you sort your buckwheat? I have found gluten grains in my 100% gluten free grains before. Now I sort and wash first.

Did you not read it carefully, or do you not understand why you would want to remove gluten grains?

Do you keep track of where the strawberries come from? That might be the difference. One source might be problematic and another one might not. There is also a cumulative effect as mentioned by someone else, in which case you may need to consider more than one food as causing a problem.

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dilettantesteph: sorry I'm lost, I have no idea what means to sort buckwheat. I just buy it bagged and there is a sign on the package 100% gluten free.

Regarding the strawberries I just buy it from a farmer typically. I'm trying to avoid those from big shops like walmart etc*

Maybe I should focus on repairing my digestive tract - like by supplementing l-glutamine or something?

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dilettantesteph: sorry I'm lost, I have no idea what means to sort buckwheat. I just buy it bagged and there is a sign on the package 100% gluten free.

I did see you say something about a translator. Maybe there is a language problem. Where do you live? Farmers grow many grains in rotation. Sometimes they use the same equipment for different grains and they can get mixed up with each other a bit. I look through my grains and pick out stuff that doesn't belong. I find stems, small pebbles, and other grains like corn and wheat in stuff like buckwheat and sorghum. While the grain itself is 100% gluten free, the contents of the package are not always 100% gluten free. The amount is small enough not to bother many celiacs, but the more sensitive among us may need to remove this extra material.

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Ok now I understand. I'm from Europe and I'm not native english speaker sorry. Actually the buckwheat that I'm buying is recommended by local glutenfree society so I doubt this is the problem. Right now I have started supplementing with l-glutamine, probiotics and colostrum. I wonder if there will be any result...

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Some celiacs are sensitive to lower levels of gluten than others. I am one who is sensitive to extremely low levels. I didn't get better on the gluten free diet either at first. The recommendations of celiacs did not work for me. The people making the recommendations were celiacs who responded to more "normal" levels of gluten. I had to take extra precautions before I could get better. Sorting and washing my grains was one of those extra precautions. You may not be getting better because you are sensitive to lower levels too.

My father isn't a native English speaker either. No need to apologize!

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Hello,

I have been on gluten free/diary free diet for almost a year now. The only positive effect that I see is the lack of stomach issues but it may be related just to the healthy food I'm eating. Which right now is: apples/tuna/wheatgrass(gluten free)/chicken/eggs. These all the only things I eat. Anyway long story short I still have perioral dermatitis/acne and besides that I don't feel really well. Is there any possibility I have been misdiagnosed?

Have your doctor test both your total IgA and total IgG. You could (though it's rare...one in 60,000 to one in 100,000 depending on who you ask) have an immune condition that damages villi in the same manner of celiac, but does not respond to a gluten-free diet.

A shot in the dark, but tests are not that expensive and it could be an answer.

Were you, by chance, IgA deficient when you had celiac bloodwork? If so, I'd REALLY pursue the IgG testing.

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When was the last time you went for a check-up?

I suspect the celiac disease was diagnosed correctly, but you could have other health problems. Maybe you have a parasitic infection, or candida, or small intestinal cancer or lymph node cancer. There's a whole slew of health problems that are more likely to be seen with celiac disease.

Or maybe you aren't getting enough other nutrients...your diet is very small. B12 is only 1 vitamin of many.

Have you tried putting dairy back into your diet yet?

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