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Reuters Has Article Saying Dermatologists Claim Dh Celiac Remission


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#1 Takala

 
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Posted 21 November 2010 - 05:17 AM

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.c...E6AI44620101119

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-...atol.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–tumor necrosis factor (TNF) agents, or oral steroids and not adhering to a gluten-free diet. Only those who were no longer taking these drugs and no longer adhering to a gluten-free diet were considered to be in remission.

_____
A critical yet unanswered question is what are the factors involved in DH remission in these patients? Patients in the present study whose disease was manifest when they were older had disease remission more commonly than those with earlier disease onset. One may postulate that those with earlier DH onset had more severe disease, but there is no evidence to support this; in fact, these patients did not require greater drug therapy to control their disease. There did not seem to be an association between DH remission and drug dosage: some patients who had DH remission were taking as much as 200 to 300 mg/d of dapsone at some time during their course of disease. We can offer no good reason why year of onset of DH (between 1960 and 1972) also seemed to correlate with DH remission.


____
This study is subject to at least 3 limitations. First, the sample size was small, limiting the power of the study to detect differences in DH remission probabilities between groups. A small percentage of the cohort was also lost to follow-up. Considering the rarity of the disease, however, our cohort is one of the largest in the literature. Second, information collected from patients and family members was self-reported and subject to recall bias. In addition to the inherent restrictions of a retrospective study, including working within the scope of available medical chart data, studies involving self-reported data are susceptible to recall errors that can affect internal validity. We attempted to minimize recall bias by strictly defining the research question, standardizing patient interviews with appropriately detailed questions, and standardizing data collection. Third, we did not assess the duration of DH remission following the initial 2 lesion-free years required to meet the study definition of remission.

Results of this study show that DH can go into remission. Therefore, clinicians should continually reevaluate the need for medical therapy and a gluten-free diet for their patients with well-controlled DH, with the idea that DH might actually be in remission in some patients.



They didn't follow up past 2 years and they're claiming it can go into remission ?!

What the ---- ? :ph34r:
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#2 lovegrov

 
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Posted 21 November 2010 - 07:30 AM

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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#3 cassP

 
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Posted 21 November 2010 - 10:05 AM

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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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#4 yolo

 
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Posted 21 November 2010 - 08:14 PM

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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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#5 lil'chefy

 
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Posted 04 February 2013 - 05:58 AM

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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#6 ravenwoodglass

 
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Posted 04 February 2013 - 06:22 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 lil'chefy

 
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Posted 04 February 2013 - 06:31 AM

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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#8 pricklypear1971

 
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Posted 04 February 2013 - 03:04 PM

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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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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