Need For Endoscopy Following Dh Dx?

[jlaw]

Hi all,

I have been dx by skin biopsy this week with DH. My GP is saying I still need to have the endoscopy for intestinal diagnosis and I'm having trouble understanding why. Whether it is poitive or negative, my treatment plan still remains dapsone and gluten-free diet. Do I require an intestinal biopsy to have a 100% conclusive celiac disease dx. Does anyone have any suggestions on this?

Thanks!

[squirmingitch]

Your doctor is not up to date. A dx of dh IS a dx of celiac disease. You do not need an endoscopy to confirm celiac disease. Further, the intestinal damage in dh celiacs is patchier & harder to find than with celiacs with GI issues & no dh.

The pathology of the gluten-sensitive enteropathy (GSE) associated with DH and that in ordinary GSE (celiac disease) are essentially the same, although the lesions in the jejunum (12- to 14-inch section of the small intestine) in ordinary GSE (celiac disease) are usually much more severe. It is important to note that lesions in the jejunum for both dermatitis herpetiformis and celiac disease in no way represent the skin lesions of DH and that the IgA deposits are not found around the lesions in the gut membranes. Most patients with DH are symptom-free as far as the gastrointestinal tract is concerned; only 14 to 20 percent of patients with DH have malabsorption of fat, D-Xylose, or iron, or any combination as is typical of patients with GSE (celiac disease).

From:

Open Original Shared Link

I assume the derm who did the biopsy can prescribe you Dapsone. But I hope you take a good long look at Dapsone before you decide to take it. There are many severe possible side effects. As bad as I itch I refuse to consider Dapsone.

[squirmingitch]

I was limited on time before when I replied. I still am limited but here you go. This is as official as they come. Print it out & take it to your GP OR your derm. The derm should have given you a dx of celiac right then & there rather than pawning you back to your GP.

Since DH is the cutaneous counterpart of celiac disease ('skin celiac disease'), a proven diagnosis of DH in a patient should be taken as indirect evidence for the presence of small bowel damage. Accordingly, a duodenal biopsy is unnecessary in DH patients [Open Original Shared Link].

From:

Open Original Shared Link

And welcome to the board!

Here is a link to get you started:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Also, I would like to say on the Dapsone subject that taking Dapsone masks the symptoms of dh. Since most of us with dh have little GI symptoms to tell us when we've been glutened then as abhorrent as it is, the dh is our marker for glutening &/or cross contamination (cc). Let's suppose you are taking Dapsone & you have no idea you are being cc'd by something you thought was safe. You can spend 6 mos. or however long you are on Dapsone doing damage to yourself w/o even knowing it. Just food for thought. (pun intended)

[jlaw]

Thank you squirmingitch! This is really helpful. The dapsone part too. I'm on day 4 of dapsone. Fatigue, and my face feels really weird! like it's hot or something. But I never thought about the masking symptoms aspect. Can you tell me, when you were diagnosed, did you just do the gluten-free diet and no dapsone? I was under the impression that dapsone (in the words of my derm is "100 %" necessary.) Can you tell me how your rash is and how you've found the process of clearing your skin? Thank you.

[JaneWhoLovesRain]

Hi jlaw - I read your other post in which you said you were diagnosed with scabies before dh. That is my story also, except I still haven't been diagnosed with dh, in fact my biopsy for that came out negative but I found out after the test that it was taken from a lesion, not a clean part of my skin so it was destined for failure from the start . So I say lucky you that you have a doctor who knows what he is doing. Except for the telling you that you need an intestinal biopsy. If your skin biopsy came out with a definite positive for dh you do not need an intestinal biopsy. Though some doctors are of the "old school" and think that is the only way to get a sure diagnosis.

Jlaw, is there any chance you have pics you could post? I think it would help the others of us who are on that line where everything points to dh except the doctor saying so and the actual biopsy. I have had a rash for the last 7 months, at one point very severe. I gave up the one food I thought had hidden gluten and for the last 2-3 months have been 98% rash free, I can't seem to lose the last 2%. At this point it is very tolerable and I am far from the point where I need dapsone and honestly, the side effects scare me. Taking it isn't 100% necessary, though many find that they do need it. Have you just recently gone gluten free? You could always see how you feel without it and if you find the rash is clearing on its own you may not need it

Jane

[rosetapper23]

You definitely do NOT need to take Dapsone. Most of us have refused to do so (based on comments on this forum). It is a fairly dangerous drug and completely unnecessary as long as you follow a gluten-free diet (and eliminate iodine for the first few months until the lesions disappear). Luckily, with celiac disease, no medication is necessary except for perhaps nutritional supplements, as needed. We are fortunate that we only need to follow a restrictive diet, and it is a very healthful diet. Yay!

Your dermatologist, while very capable at biopsying and diagnosing DH, should know that medication isn't the answer when it comes to this particular disease. It is completely unnecessary! Unfortunately, doctors are taught in medical school to always treat the symptoms and not the cause. So sad....

[squirmingitch]

jlaw, I was self dx'd at first. I had the rash for years -- at first

very minimially as in one or two blisters --- I get the textbook clear

blisters but also get the "bites" & most of mine appears symmetricaly

although not always. I had a "muther" of an outbreak in April 2011 & by

the time Sept. rolled around I had Googled enough to find dh. It fit

like a custom made glove. I didn't have too much in the way of GI

issues like regular celiacs do. I also get the dh in my scalp & guess

what? My mom had it but not as bad. I felt hers many times & watched

her scratch like crazy. She used to keep a clean toothpick handy so she

could scratch w/o messing up her hairdo. She always called it "nerves"

& never went to the doc for it. I also had/have a fatty liver - celiac

fit. A hysterectomy at 37 - celiac. Belching like a sailor - celiac.

Migraines - celiac. I could go on but you get the picture. When I

discovered it was dh that was it! I went gluten-free immediately (or at least

thought I was gluten-free -- learning curve issues). I knew I could not get a

biopsy being gluten-free but didn't care. I had enough of itching, burning,

stinging, & sleepless nights. No way I was going to continue eating

gluten especially when I knew I had a long road ahead of me getting the

IgA out of my skin.

Here are some links to my threads & I think you will learn a whole lot

by reading them. These show my mistakes & what the ones who have

already discovered how to deal with dh knew & taught me. I post these

in hopes they will save you making the same mistakes I did. In the very

first thread I was told about salicylates but I thought I could get

away w/o having to go low salicylate (sals). I was wrong.

understanding/

in-its-tracks/

scared-frustrated/

The quick answer to your question is that I am still dealing with dh

off & on. I'm still learning too. My latest mistake was Vodka. While

the official stance on hard liquor is that the distillation process

removes all wheat; there are those who say they have a reaction from it

anyway. I thought I wouldn't have a problem b/c of Vodka --- potatoes

right? Well, gee, you learn something new everyday. 1) apparently I am

super sensitive & do react to wheat alcohols. 2) I had no idea not all

Vodkas were made from potato. The vodka I drank was made with wheat.

Had I known that in the beginning I just plain wouldn't have taken a

chance & would have gotten a potato vodka. I have one now though!

Also, you will need to be very careful with things like Tylenol &

Aleve. They make dh go NUTS! Tylenol is not as bad as Aleve but be

forewarned. There are times when you just can't do without them but

there will be a price to pay in the form of dh. You might get away with

1 Tylenol once in a while but each one you take ups the ante.

All medical info. says it can take up to 2 years gluten-free for the IgA to get

out of our skin. Some ppl have found relief much sooner than that.

Everyone is different. Some on here are still going after 2 years. But

it is not continual --- it does get better & the itching doesn't last

as long. But you will need to be rabid about not getting glutened. DH

is extremely sensitive to the tiniest amount of gluten!!!!! Everytime

you get glutened it will put more IgA in your skin & lengthen your

"time in jail" so to speak. I still will not eat out. NO! It isn't

worth the risk.

And no, Dapsone is not 100% necessary. Most of us do it w/o Dapsone.

Not saying it's easy but those of us who will not try Dapsone feel it's

less risky than adding another possible MAJOR problem to our list from

using Dapsone. And maybe you will be one of the ones who clears up in 6

months. I sure hope so.

[eatmeat4good]

I agree with the posters above that Dapsone is not necessary. You can quickly become anemic and should be monitored by blood tests to see that you are able to tolerate Dapsone. I took Dapsone for 2 weeks. The first week I was fine and it worked, no more itching and burning, but the second week the dose was increased and I became severely tired and fatigued, my legs broke out in a red rash and the next day my whole body had pinpoint raised red itchy dots all over it. My eyes got bloodshot and I felt brain fogged. I stopped the drug immediately and had to do a round of Prednisone to counteract the effects of Dapsone. I got one week of relief, one week of hell, and one week of Prednisone. So I won't be recommending Dapsone. It doesn't solve anything. You still have to be 100% gluten free and some people have to limit iodine as well to heal the rash. Go to thyca.com to find out how to limit iodine. Iodine can keep the antibodies active in your skin.

If you are diagnosed with DH, you ARE diagnosed with Celiac. It's in the medical literature. There is no need for intestinal biopsy.

Glad you are here!

[jlaw]

Thank you all for you input. It really is much more helpful than medical sites and doctors! eatmeat4good- I was interested to hear about your fatigue and bloodshot eyes...The eye thing I definitely tried to find online but couldn't find out if I could attribute it to dapsone. I'm about a week on, and I feel like the adverse things are settling, but not noticing too much in terms or rash improvement. Will give it maybe another week or so and re-evaluate.

Janewholovesrain - hi! (I'm also a Jane. Fairly fond of rain as well, which is lucky because it's monsoon here in India!) The only reason my derm took a biospy from clean skin was because I politely suggested it to him after reading this forum! He ended up taking 3 - a clean skin, a lesion and not sure what the other was. It was also after 5 weeks of pointless scabies meds. Happy to post the photos I have, not quite sure how. It's asking for a url?

Thank you all for your time and the links, it really is much appreciated.

jane