Interesting Reading On Dh

[squirmingitch]

I made a post on another thread in the post dx forum & some there were saying they did not know much about dh 7 wouldn't mind learning more as well as wanting to know what the source was for things I stated. Here is my post, copied & pasted. I did not want to hijack the other thread plus this forum is the best place to discuss dh so I post the sources here.

My post from https://www.celiac.com/forums/topic/95135-my-biopsy-word-for-word/page__st__30

I will also add a tidbit of information here. In the case of celiacs with dermatitis herpetiformis; we test negative on the blood panel even more often than celiacs with the GI issues. We also have patchier damage in the gut so it's harder to find with an endoscopy/biopsy. Thus, it's even more difficut for us to get an "official" dx. We can have the area adjacent to a lesion biopsied but we have to have been actively eating gluten just like for the blood panel & endoscopy PLUS there is a 37% false negative return on the biopsy. AND you had better have a derm who REALLY knows their stuff doing the biopsy. All in all; it's harder than heck to get a dyed in the wool dx.

Now, here are the sources along with selected excerpts:

DH is diagnosed by a skin biopsy. Biopsy needs to be performed on uninvolved skin (clinically normal-appearing skin immediately next to an area of inflammation). False negatives may occur if a biopsy is performed on skin that is affected by the condition.

IgA antibodies must be present in the skin biopsy for a definite diagnosis (4). It is important the person continues to eat gluten as the gluten-free diet can cause false negative results.

The NICE guideline on the recognition and diagnosis of coeliac disease recommends that people with DH should be screened for coeliac disease. The gastrointestinal symptoms of coeliac disease can be mild and in some cases are not apparent at all. Less than 10% of people with DH have gastrointestinal symptoms characteristic of coeliac disease (1).

Clinically, 10-20% of patients with DH present with classic symptoms of malabsorption and another 20% are estimated to have atypical symptoms, but at least 60% of patients have 'silent' coeliac disease.

The presence of DH is a marker of coeliac disease that is independent of the severity of histologic coeliac disease or the intestinal symptoms.

Open Original Shared Link

And this entire article is interesting & really should be read in it's entirety as it relates to both celiac disease & dh. Read especially, the last 1/3 of it. And it will verify much of what I stated.

Open Original Shared Link

A novel hypothesis of autoimmune pathogenesis of

celiac disease consists of deamidation of wheat gliadin

by tissue transglutaminase, binding to HLA-DQ2 and

its recognition by gut T cells with subsequent production of epithelial damaging cytokines, matrix degrading

enzymes, and also IgA autoantibodies against tissue

transglutaminase.

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[eatmeat4good]

Golly Squirmingitch!!! You must be researching more than itching recently huh?

Thanks for all of that good information! We have been active on the DH forum lately! I for one, appreciate the information and your hard work! Good job!

[squirmingitch]

Thanks eatmeat! I think I may have gone a little overboard. Actually it wouldn't have been so hard if I was a good girl & had all my bookmarks organized but I don't & I have at least 200 bookmarks on dh alone & another possible 200 on celiac in general. One of these days I vow to organize the darn things.

Actually, I think I do this to keep from itching.

[cindylou7]

squirming...

I want to be you when I grow up...but really... I cannot imagine how much time it has taken to gather this information but I am thankful. I promise to read all of it as soon as I can. I have learned that the only one who can help me is me. Very few doctors have enough understanding of this condition. Every bit of valid research and new information is important.

[Hopeful1950]

This is AMAZING!

Is there a way to pin it at the top of the DH forum so newbies can be sent there? I sure wish I had had this wealth of information all in one place when I started my long education about DH and how to deal with it.

Thanks for posting it.

[EM-MV]

How validating to read that since my biopsy shows the rash is DH, that means I have celiac. I also have the gene, but my doc thinks it still could be something else...Who cares? I also find it very impressive how many people on this forum are self-diagnosed.

I remember when the dermatologist called my rash psoriasis and prescribed an ointment to use for 2 weeks on, 2 weeks off FOR THE REST OF MY LIFE?? I wouldn't buy into that and instead went on a cleanse. The cleanse changed the rash from a run-of-the mill (super) itchy rash to pustules and I was lucky enough to read a description of exactly my rash in Wheat Belly. There are some ways that having a condition which is in my control to heal, by eating a healthier diet, has actually been a good thing in my life. (Like losing 10 pounds and keeping it off.) It has taken 3 months of gluten-free diet for the rash to go away (and now it is back, but I will now be careful about soy as well).

My question, because I'm impressed with all you've read/written here, is if you can explain more the iodine factor mentioned, and whether I need to avoid iodized salt.

[squirmingitch]

Some ppl with dh find they do not need to go low iodine but many of us have found iodine to make our dh worse. I can't really explain why iodine is a factor; I have never read anything explaining exactly why it affects us. And as to how much or which iodine conditioning foods need to be limited depends on the individual. If you want to see if iodine is a factor for you then I would suggest going completely low iodine as per thyca.org & seeing how you react for a week or so or maybe two. Then you can try adding iodine foods one at a time to see which affect you the most if at all.

BTW, I have never read any medical info. that says soy affects dh. Soy is often not tolerated by celiacs including those with dh but that is a gut thing not a dh thing. I can't eat soy or I get major, bad bloat & I mean BAD.

Here are some links about the iodine thing:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Dh122012]

This really is a fantastic compilation of DH references! Thank you! It worries me a little that you talked about your itching though in follow up comments This Dapsone seems to be a miracle drug. I imagine you are off of it though and controlling your DH by GFD only. So, are you still itching? The GFD doesn't keep it all away?

[squirmingitch]

I have never been on Dapsone. I most likely wouldn't be able to take it as I'm allergic to sulfa drugs & it's in the sulfa class.

I am now gluten-free for 13 months. And for much of that time I have been low iodine. I have had periods of very few lesions & periods of MANY lesions. DH can present at any time at all even when you are strict gluten-free (as I am) for two years (& some sources say even up to 10 years) after going strict gluten-free. There are those who have had results & very little dh after going gluten-free for a matter of months. then there are those like myself who have "spontaneous outbreaks" long after going gluten-free. I have never seen an actual study done on the relationship between length of time & severity of the dh prior to going gluten-free but we have often speculated on here that the longer you went w/o knowing it was dh as well as the severity for that length of time has a direct relationship to how long it will take for the dh to resolve for each person.

The medical literature says that we can have outbreaks until such time as all the antibodies get out of our skin. BOO HISS! But something we have to live with & deal with no matter how much we hate it.

[cahill]

I do not have the time this morning but bookmarking for in depth reading later today . Thanks for posting this squirmingitch

I was one of the lucky ones ? that had a positive DH biopsy .

[squirmingitch]

YVW chill.

But you were misdiagnosed for 40 years. GROAN.

I'm going to add 2 links which Karen posted on another thread b/c they are perfect for here & for newbies trying to get their docs to "see the light" as well as understand that a dx of dh IS a dx of celiac.

Open Original Shared Link

Open Original Shared Link

Chill, when you have the time will you please tell us how you're doing now? You've been gluten-free a little over 3 yrs. at this point. And did you do Dapsone?

PS - I like that --- "if it tries to kill me I do not eat it" in your signature line.

[cahill]

Chill, when you have the time will you please tell us how you're doing now? You've been gluten-free a little over 3 yrs. at this point. And did you do Dapsone?

I am doing very well now As long as I do not try to eat anything that tries to kill me I am good

Honestly ,after 3 years eating gluten free is second nature.

I do still occasionally get a breakout but not where near a bad as before going gluten free. As time goes on the breakouts happen less often . They are also becoming less intense as time goes by .

I am still low iodine but that is kind of a balancing act with my thyroid issues.

No I did not do Dapsone. . My doc felt it was to much of a risk with my liver issues . At that time he was not sure of the extent or origin of the damage.

[squirmingitch]

Thank you chill. That kind of info. gives the rest of us coming behind you something to go on & gives us hope while we weather the storm.

[Rita L]

How validating to read that since my biopsy shows the rash is DH, that means I have celiac. I also have the gene, but my doc thinks it still could be something else...Who cares? I also find it very impressive how many people on this forum are self-diagnosed.

I remember when the dermatologist called my rash psoriasis and prescribed an ointment to use for 2 weeks on, 2 weeks off FOR THE REST OF MY LIFE?? I wouldn't buy into that and instead went on a cleanse. The cleanse changed the rash from a run-of-the mill (super) itchy rash to pustules and I was lucky enough to read a description of exactly my rash in Wheat Belly. There are some ways that having a condition which is in my control to heal, by eating a healthier diet, has actually been a good thing in my life. (Like losing 10 pounds and keeping it off.) It has taken 3 months of gluten-free diet for the rash to go away (and now it is back, but I will now be careful about soy as well).

My question, because I'm impressed with all you've read/written here, is if you can explain more the iodine factor mentioned, and whether I need to avoid iodized salt.

New to this condition but had to chime in... Mine was dx'd as a foot fungus for over 2 years! I was using an antifungal that basically dried it up until I had snake skin. I'm still recovering from that. I knew I had Celiac but did not even think it could be DH...