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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.

Reuters Has Article Saying Dermatologists Claim Dh Celiac Remission
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There have been all sorts of goofy, inaccurate gluten intolerant and celiac articles in the main stream glutenoid media this past year, but this one takes the rice cake.

According to a Dr Stephen Katz at the NIH, National Institutes of Health, he is claiming (!!!) that a small percentage of patients with DH go into remission after treatment with dapsone and can go back to eating a normal diet instead of a gluten free one, as long as they don't have intestinal symptoms.

http://www.reuters.com/article/idUSTRE6AI44620101119

Reuters Health

Painful "gluten rashes" might not be forever

by Alison McCook 11/19/2010

(Reuters Health) - A small percentage of people with a painful, blistering skin disease may eventually go into remission, saving them from medication and a strict diet, a new study reports.

"A 'lifelong' disease may not be lifelong," study author Dr. Stephen Katz at the National Institutes of Health told Reuters Health.

But the new study found that, among 86 people with dermatitis herpetiformis, 10 never saw their symptoms return after stopping medication and resuming a normal diet.

So even though people with celiac disease are supposed to stay gluten-free indefinitely, for those with dermatitis herpetiformis who don't have intestinal symptoms, it makes sense to stop the diet and see if they feel okay, Katz said.

"I always tell them to cheat a little bit, see if they need the diet," he said. "Because if some patients don't need the medicine, they may no longer need the diet."

In the current study, published in the Archives of Dermatology, one-third of dermatitis herpetiformis patients had once had symptoms of celiac disease - but they were just as likely to go into remission as those with no celiac symptoms.

Unfortunately, there were no obvious differences between the patients who went into remission and those who didn't, Katz noted. "We couldn't make sense of it."

Dr. John Zone, chair of the department of dermatology at the University of Utah, who reviewed the findings for Reuters Health, said the remission rate of 12 percent matches what he's seen in his practice. "I agree with the percentage of people who have spontaneous remission."

There is concern, he added, that people who don't stick with the diet may have a higher risk of lymphoma and other complications. Consequently, Zone suggested that patients with dermatitis herpetiformis who decide to stop the diet have their blood tested occasionally to look for celiac antibodies, even if their skin symptoms never return.

Luckily, a small percentage of them will be able to enjoy a normal diet and a life without dermatitis herpetiformis medication, Zone said -- which is a very good thing.

The only people I have ever heard of who had a remission from gluten intolerant or celiac symptoms were those who were successfully treated for Lyme disease.

Am I missing something here ?

Isn't it once a celiac or gluten intolerant, always a celiac or gluten intolerant ? Aren't most symptoms so vague the majority of us get no diagnosis or the wrong one anyway ?

Should doctors be telling celiacs to go ahead and cheat and see how they feel ? That 10 out of 86 patients who supposedly stopped the diet and never saw the symptoms return would be 11% of celiacs with DH. How long was the followup period and were all of them tracked for decades ? The study went from 1972 to 2010, thirty eight years. Older patients were more likely to stop displaying symptoms than younger ones.

This story was also reported in the Nov 15th Archives of Dermatology. http://archderm.ama-assn.org/cgi/content/full/archdermatol.2010.336v1

The long-term primary outcome was defined as absence of skin lesions and symptoms of DH for more than 2 years while not taking sulfones (dapsone or sulfoxone), sulfapyridine, anti

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While it sounds weird, my own father took dapsone for something like 20 years. He forgot to take it for a couple of days and when nothing happened, he just quit taking it. No DH for more than 5 years and no celiac-like symptoms (he didn't know about celiac and hadn't been tested). The DH finally returned and after I was diagnosed he also tested positive. But for those 5 years I would say that he was basically in sort of a remission.

richard

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you could be asymptomatic and still have autoimmune destruction going on in your small intestine... most Celiacs dont have any gut symptoms..

ive had every classic symptom + neurological, mental, and skin symptoms for over 25 years... with ebbs & flows.. but i didnt get DH till i was 38 years old.

most of my issues are completely gone... my DH is fading and doesnt itch anymore.. does that mean that i can start eating gluten again???? :lol:

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My mother got dh when she was 4 years old. She was treated for sprue until she was 18 or 20. After that she went back to eating gluten. It was thought that she "grew out of it." What no one notices was that she had other probably related symptoms to gluten intolerance. Increased anxiety, panic attacks. Frozen shoulder and frequent tendonitus. Frequent migraines. Dry eyes and glaucoma. Tendency to get colds and flu. In her old age however the DH came back--at age 91 or 92. At first we thought it was some kind of bug biting her... She is now 95.

Although my RN sister is in denial about the whole thing, its clear to me (from observation) that when my mother eats gluten she gets lesions afterwards and is more confused mentally.

She also recalled to me about three years ago that she was tested some 20 years previous at Kaiser and still came out positive for celiac...this was when she was having symptoms of "occult diabetes"...

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I have "had" celiac, via DH diagnosis for 23 years. I have taken Dapsone for 20 years (100mg.). I stopped the Dapsone maybe 1-2 years ago. I was on a gluten free diet for about a year of that time (strict), after going off of the dapsone. I am eating a clean regular gluten included diet right now, but considering going gluten free again. To date, I have not had a DH breakout in many years. I had a skin biopsy confirming DH done 3 or 4 times. Right now, I am struggling with the idea of going gluten-free again. I hate eating food that is in no way comparable. There relly is nothing as delicious a a steaming loaf of homemade gluten derived bread, ya know? The fact that I have not broken out makes it very difficult for me to go on such a strict regimin. Now I will move on to my current symptoms, and maybe someone could help me understand why I am not breaking out, or what the relationship is for me. First, you should know, I have had the celiac panel--- It says I don't have celiac disease. I have had a blood test done for food allergies---It says I don't have any, accept for sesame, which I eat all the time, and have never had a reaction to. I have had an endoscopy done, no sign of celiac disease there either.

Now I will list the health problems that I have been struggling with for a couple to a few years now. First off, I have stopped making ALL hormones, at 36 years old:-(. I am currently on bioidentical hormone therapy, but so far, that has yet to help me feel better. I have had saliva testing done and blood work done for my hormones. Both show that I am not even in menapause, I am not making any HORMONES. I have extreme adrenal fatigue. I have always had ADHD symptoms. I have pervasive, relatively new joint pain. Literally all of the sudden, my skin is ridiculously dry, and my skin is aging VERY rapidly. I am having massive female problems, but still mensing. I have been passing out, only twice, but still, I have a 5 year old and a 3 year old! Tests show that I am flirting with hypothyroidism, I test on the low side of normal. I have been having severe anxiety/ mood swings for a few years. I CANNOT lose weight, no matter what I do. I count calories, and run for exercise. I don't lose any weight, I just make my bones hurt and make my exhaustion profound. My feet hurt so badly, that I don't feel like I can walk correctly sometimes. I am in school and I nod off sometimes! That is so not like me. My blood pressure is so low, sometimes at the doctor's office, they don't want me to drive home. I take immaculate care of my teeth and my mouth, but to no avail (they are decaying at a rapid speed, and my gums are so sore). I should also mention that I got crazy, they won't stop nose bleeds when I was little, but was always only on the brink of being anemic. All these reasons and many others are why I decided to go gluten free once and for all November of last year. And so I did....... I got absolutely NO relief from any symptoms what so ever. It was very depressing for me. I thought I had finally nailed it...that silver bullet that so many doctors miss. They have run a lupus panel. I don't have that. I am SO tired of feeling like crap. If anyone has any info for me, it would be invaluable for me. I have an appointment with an endocrinologist later this month, but I am pretty pessimistic about the outcome.

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It can take longer than 3 months to heal when many other body systems are impacted. In the first part of your post you state you are on a regular gluten containing diet right now but you also state you have been gluten-free since Nov. Are you going back and forth between gluten-free and not gluten-free? If you are then it would be a good idea to get very strict with the diet and give it time. It isn't always the gut that is the most severely impacted in us. It takes a while for brain, joint and other celiac impacted systems to heal. In my own case it was a good six months to see some resolution in joint and muscle issues and brain impact.

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It can take longer than 3 months to heal when many other body systems are impacted. In the first part of your post you state you are on a regular gluten containing diet right now but you also state you have been gluten-free since Nov. Are you going back and forth between gluten-free and not gluten-free? If you are then it would be a good idea to get very strict with the diet and give it time. It isn't always the gut that is the most severely impacted in us. It takes a while for brain, joint and other celiac impacted systems to heal. In my own case it was a good six months to see some resolution in joint and muscle issues and brain impact.

I was strict with the diet for 1 year and one month, then I just started feeling like I was being restricted for no reason. I was showing NO signs of feeling better.
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I was strict with the diet for 1 year and one month, then I just started feeling like I was being restricted for no reason. I was showing NO signs of feeling better.

I would suggest that your primary symptoms that you FEEL may be adrenal, thyroid, and hormonal. And since those aren't resolved (and are so severe) you may not feel the difference from going gluten-free.

You need a good ND or somesuch. Not a whack job, but one that has a MD and ND background that treats you to improve thyroid/hormone function/adrenals. After a year of gluten-free I personally hit a wall, and until my new ND explained quite thoroughly the hormone/adrenal/thyroid connection and I started doing what I needed to do: exercise, specific supplements, eating on a schedule , etc. (I had been strictly gluten-free so that was already done) I did not see improvement.

I'd bet you aren't "borderline" hypothyroid, either.

I reco an ND over an MD because ND's usually work with patients differently and listen to your symptoms and help you relieve symptoms; not just treat the labs. But you never know. Keep looking til you find a doctor that is a good fit.

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