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Possible Dh?

DaVille06

By DaVille06
in Dermatitis Herpetiformis

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DaVille06 Newbie
DaVille06
Posted

Since the summer of 2011 (before I was diagnosed) I have had a rash on my waist line off on. It will come and go. I just recently noticed that it was back about a week ago. In fairness I hadnt been following a gluten free diet all winter break. I was recently diagnosed and am still getting used to not having gluten. The descriptions of DH sound similar to mine except there is never any puss or busting. Just small pimple sized rashes that itch. Usually only 2 or 3 in a cluster at a time. I haven't had gluten in about a week and I'm wondering if DH comes and goes like this? Or when I'm not eating gluten is it just not aggitated. Any info on DH would be great as I know hardly anything about the disorder. Wanting to make sure I shouldn't see my doctor if this is maybe something else and more serious.

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eatmeat4good Enthusiast
eatmeat4good
Posted

It sounds like DH. Not all of us get watery oozing blisters. The blisters are sometimes very tiny like pinpoint size which you may be describing. They can be mistaken for acne or mosquito bites. DH is notorious for coming and going. But mine just came and stayed. In the beginning I had fairly mild reactions like you are describing. Mild rash that never healed. Then an open sore that never healed.

I'll post some helpful links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Anyway, this will get you started. :)

I want to caution you that some of the pictures are of severe cases. Just because yours is not that severe doesn't mean it isn't DH. Many of us started with fairly mild reactions before the antibodies built up to the point where we had serious rashes that would not heal.

If I had recognized mine when it was pinpoint blisters on my hands then I wouldn't have huge excoriations and scars on my arms and face. DH is particularly sensitive to cross contamination. And Iodine causes the antibodies to remain active.

You certainly could talk to your Dr. and let him/her observe the rash and see if it is consistent with DH. It is not a bad idea to be sure and rule out everything else.

DaVille06 Newbie
DaVille06
Posted
  • Author

Thanks alot for the links and the info. I believe it probably is DH from what I'm reading and seeing. So will the rash still come and go even if I never had a piece of gluten ever again?

squirmingitch Veteran
squirmingitch
Posted

If you never have a piece of gluten again then at some point the rash will go away & stay away; that is unless you are one in a million or billion (not actual figures there). Especially since you have caught it early as eatmeat4good says. But it's really hard to stay gluten free because of cross contamination. Unless YOU make sure you eat NO processed foods. You CAN do that. You need to be careful of topical things having gluten also & vitamins & medications etc..... Read a lot of these posts in this forum & you will get a very good idea.

Come back with questions if you have them.

eatmeat4good Enthusiast
eatmeat4good
Posted

Iodine

Preservatives

Food coloring

Salicylates

All cause me to react and prevent my sores from healing. Not sure why really. It took me years to figure this out. Gluten of course is the worst but as squirmingitch says...it is extremely hard to stay gluten free. Gluten traces can cause reactions for weeks. However, my sores were active for 7 years and you are catching yours early...so perhaps it will be different for you. Hope so.

squirmingitch Veteran
squirmingitch
Posted

I have so much hope for you! You are young. You have caught this early. Because you're young then you aren't quite as set in your ways as most of us who are older. Obviously you're attending college --- take some nutrition courses so you can make sure you know how to get all the proper nutrition from the foods you eat. And will know what vitamins & minerals are in each food.

You will have to be very careful with this & do not succumb to any peer pressure. You can't eat out like other people do. Eating out is sort of like asking for cross contamination. You will most likely get "warning spots" when you get cross contaminated (cc). Pack "safe" foods to take with you when away from home even for a few hours. Take apples & such along to snack on. Kind bars & Larabars are gluten free & delicious! Easy to stick in your purse (if you're female).

Eat whole foods. Learn to love fruits & veggies & nuts & fresh meats. It's actually a healthier way of eating. Tell your friends that. Tell them you don't eat "junk" & in this case it takes "junk" to a whole new level.

Wishing you the very best!

ponygurl Newbie
ponygurl
Posted

I am new to the site. I too am concerned that I may have DH. I was diagnosed with celiac disease in 2005 and have tried to maintain a gluten free diet. I have done pretty good so far but I do have the occasional cross contamination issue. Beginning in mid December I broke out all over my body in the most excruciating itchy rash that blistered. It feels like hundreds of tiny needles sticking me. I have been to my GP, dermatologist and Gastro docs. The Gastro doc insisted that the dermo doc do the biopsy for DH even though I had been taking Prednisone for 10 days. I am still an itchy mess and my labs came back today negative for DH. My dermo doc said he would do the testing again if I had another outbreak; in the meantime he prescribed Allegra in the a.m. and Aderax in the p.m. I use Sarna lotion and ice on my itchy areas. (Had to stop the Prednisone b/c of the side effects.) I am soooooo frustrated. It's making me miserable, depressed and irritable. In my "gut" I feel its DH. At this point I don't know what to do.

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pricklypear1971 Community Regular
pricklypear1971
Posted

**oops, didnt realize this wasn't the OP - Ponygurl. On my phone...***

Well, the prednisone can be an issue with testing. That said, up to 37% of biopsies for DH are negative. It isn't an easy dx.

Since you are already gluten-free, you may look into iodine sensitivity as a DH trigger. Google "thyca" for info on a low iodine diet. I was gluten-free 2 months, did li for 2 weeks and saw great results. People vary, but hopefully if it is DH and you are iodine sensitive you will see some lessening of symptoms.

I still get little spots, and when I do I pull down iodine intake. It generally is very effective to control my rash.

Screen your supplaments and body care for iodine, too. Carageenan, seaweed....biggest culprits in skin products.

Some DH sufferers are also sensitive to salicylates and bromines. Google both terms and see if anything rings a bell.

ponygurl Newbie
ponygurl
Posted

**oops, didnt realize this wasn't the OP - Ponygurl. On my phone...***

Well, the prednisone can be an issue with testing. That said, up to 37% of biopsies for DH are negative. It isn't an easy dx.

Since you are already gluten-free, you may look into iodine sensitivity as a DH trigger. Google "thyca" for info on a low iodine diet. I was gluten-free 2 months, did li for 2 weeks and saw great results. People vary, but hopefully if it is DH and you are iodine sensitive you will see some lessening of symptoms.

I still get little spots, and when I do I pull down iodine intake. It generally is very effective to control my rash.

Screen your supplaments and body care for iodine, too. Carageenan, seaweed....biggest culprits in skin products.

Some DH sufferers are also sensitive to salicylates and bromines. Google both terms and see if anything rings a bell.

Thank you for the advice, I will definitely be googling all this stuff.

itchy Rookie
itchy
Posted

Your symptoms certainly sound like DH.

For people with both gastrointestinal symptoms from coliac disease AND DH, DH will likely be more sensitive to gluten. So maybe your gluten intake is still too high. You could be controlling your GI symptoms but still getting enough gluten to aggravate your DH.

Best wishes. It can take a long time to figure out a path through this problem.

ponygurl Newbie
ponygurl
Posted

Your symptoms certainly sound like DH.

For people with both gastrointestinal symptoms from coliac disease AND DH, DH will likely be more sensitive to gluten. So maybe your gluten intake is still too high. You could be controlling your GI symptoms but still getting enough gluten to aggravate your DH.

Best wishes. It can take a long time to figure out a path through this problem.

Thank you. I have never broken out before, ever. All of my celiac symptoms have been along the lines of tummy issues, muscle pain, anemia, and migraine. Is it possible for DH to manifest itself years after a celiac diagnosis has been made? Just curious. The Atarax helped last night but I'm back to itching this morning although it isn't as intense.

Di2011 Enthusiast
Di2011
Posted

I wonder if anyone who has DH on this forum doesn't have another underlying issue, whether it be (super)sensitivity to cross contamination or additional immune reaction with other substance (as suggested such as additional additives, preservatives, iodine, etc etc).

Anyone out there reading who has been diagnosed DH but NOT dealing with additional problems when taking gluten out of diet ??

itchy Rookie
itchy
Posted

Diandliam, I can't detect any other issue for except ingested gluten.

As I've said before, iodine consumption doesn't seem to make any difference for me. Gluten on my skin or in the air has little or no influence on me. I've never detected any other skin allergy or effect from other substances.

I am however extremely sensitive to ingested gluten. Now that I seem to have found a diet that eliminates all gluten, I'm getting steadily better.

Reading the messages over the past few months certainly leads me to believe that many DH sufferers have multiple issues that complicate the cure.

The only other explanation is that people haven't yet found a safe diet, which seems unlikely in most cases.

ponygurl Newbie
ponygurl
Posted

I haven't noticed anything other than the gluten sensitivity in my case. I think maybe I have become more sensitive to it as I have gotten older and the time between cross-contamination has become longer.

squirmingitch Veteran
squirmingitch
Posted

It's too early for me to say anything with any certainty yet. I think iodine is affecting mine but can't verify that right now. I just had an epidural for degenerative disc disease & I expect that will calm things down for me for a while in the dh dept. so I won't be able to do any challenges for a while.

weaselfish Rookie
weaselfish
Posted

Since the summer of 2011 (before I was diagnosed) I have had a rash on my waist line off on. It will come and go. I just recently noticed that it was back about a week ago. In fairness I hadnt been following a gluten free diet all winter break. I was recently diagnosed and am still getting used to not having gluten. The descriptions of DH sound similar to mine except there is never any puss or busting. Just small pimple sized rashes that itch. Usually only 2 or 3 in a cluster at a time. I haven't had gluten in about a week and I'm wondering if DH comes and goes like this? Or when I'm not eating gluten is it just not aggitated. Any info on DH would be great as I know hardly anything about the disorder. Wanting to make sure I shouldn't see my doctor if this is maybe something else and more serious.

Hey DaVille06,

Here are some links for you to explore:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

It can take up to 2+ years for the IgA to filter out of your skin. I'm having recurring outbreaks being gluten free, going on 4 weeks, in a cyclic fashion every week or so, but the frequency and intensity is significantly reducing as time passes as I stick to a gluten-free diet. Patience and tenacity are definitely assets in this battle as well as being continuously vigilant !!!

Hope that helps and be well,

WF

weaselfish Rookie
weaselfish
Posted

Also, as far as healing time(s) go, see the two links below. Bring them up in your web browser and search for the term " heal " in both pages. Healing appears to me to be on an individual case-by-case basis depending on ones physiology / body chemistry. The first link is one persons experience:

Open Original Shared Link

Open Original Shared Link

Again, hope this helps and may we all attain health and freedom from the torment of DH !!!

WF

  • 2 weeks later...
DaVille06 Newbie
DaVille06
Posted
  • Author

Thank you everyone for the posts while I was away. With school and all I haven't been able to get on as much as usual. All the encouragement is helpful. I did have some gluten about a week ago being careless and my "DH spot" flared up again. However I still haven't found time to get it looked at. Should I consult my normal doctor about the rash or go to a dermatologist? Thanks in advance.

lovegrov Collaborator
lovegrov
Posted

Thank you everyone for the posts while I was away. With school and all I haven't been able to get on as much as usual. All the encouragement is helpful. I did have some gluten about a week ago being careless and my "DH spot" flared up again. However I still haven't found time to get it looked at. Should I consult my normal doctor about the rash or go to a dermatologist? Thanks in advance.

Well, your dermatologist is more likely to know DH while your regular doctor probably knows other skin conditions, like psoriasis. But then he'll probably send you to a derm. If your health insurance plan and/or finances allow you to see the derm first, I'd head there IF you can get an appointment. Where I live, it takes months and months to see one unless your regular doctor requests something sooner.

richard

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