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JJ May

Diagnosed as poison ivy, then contact dermatitis now eczema

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Ok I would love to not have a gluten issue but I can't ignore some of the symptoms.  But every dermatologist is a hard no on DH.  What do those of you actually  who have been diagnosed with DH  think?  Symptoms are as follows.

I lived with the rash for about 4 months.  I tried creams, anti fungals, Benadryl.....nothing even made a dent in this rash.  First dermatologist tells me I have poison ivy.  I have been an outdoors type all my life.  I know what poison ivy looks like but I went along with it.  Nothing worked.  Next step was going to an allergist.   Apparently I am allergic to EVERYTHING that grows in Texas but no animal allergies or  food allergies other than IgA suggesting intolerance to gluten.  None of the allergy shots or antihistamines they gave me helped.  I ended up with a never ending sinus infection which went away when I quit doing allergy shots.   I have a thyroid condition that is most likely Hashimoto's but other than doctors wanting me to take synthyroid and go away, I can't get a diagnosis for that either.   I have been tested for Lupus and it was negative.  I have autoimmune markers that are similar to SLE but the rheumatologist ruled out Lupus.   Basicially she was like "well you definitely have an autoimmune disease but it's not RA and it's not Lupus so I can't help you".  And the endocrinologist that she referred me to without a diagnosis told me they only see patients who have been diagnosed and do treatments so since I had no diagnosis.....they wouldn't see me.   I have constipation and bloating but no real symptoms of celiac according to the allergist ("you would be doubled over in pain if you had celiac").  My rash is on both arms (heavier on the left), across my chest but more on the left side, on both thighs (heavier on the right)  and the fronts of both of my lower legs and just a little bit on my lower back (my own itchy little tramp stamp....good times!).  But the dermatologist I saw today was very adamant that it couldn't possibly be DH because it wasn't on the backs of my elbow and on my hair line.   She said it was definitely eczema.   Then she asked me if I needed to talk to someone about my stress.  The last time I had someone ask me about my stress in relation to a complaint I had was when I was a kid.  When I finally got a diagnosis for that, turns out I had recurrent respiratory papilloma and good thing I finally got that diagnosis because I had barely any room to breathe and could have died.  I mean seriously.....doctors think you are crazy if you haven't gotten a solution and consulted Dr. Google.    I have had this rash mostly on for the last 2 years.  I think that is stress enough.  If I don't have DH, the first thing I am doing is going to get myself a big ole ice cold Shiner Boch!   So what do you guys think? Eczema?

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I'm surprised one or more hasn't told you it was bed bugs or scabies or psoriasis or, or, or.... or it's all in your head, or you scratch & make the rash happen because of scratching.

You need a derm who is experienced in dh & doing the dh biopsy. Uh, the one who said it couldn't possibly be dh b/c it wasn't on the backs of your elbows or your hairline is an ass & doesn't know what she's talking about. Apparently she thinks those are the only places dh occurs. The stupidity!!

DH can & does appear anywhere on the body. Sure there are places it appears more commonly like knees & elbows but it does present anywhere. Almost always bilaterally. For me, it does seem to favor one side or the other more heavily depending on where we're talking about.

60% of people with dh test negative on the celiac blood tests but we still get the damage to our villi although it tends to be patchier. We tend to have fewer, milder GI issues although there are those who have terrible GI issues as well as the rash. 

Oral steroids, steroid shots within 2 months prior to a dh biopsy (or other celiac testing) can produce false negatives. Topical steroids should be avoided for roughly 2 weeks prior to a dh biopsy.

Here are some links for you:

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

 

VERY IMPORTANT!!!!!! Where a dh biopsy is done. On clear skin ADJACENT to an active lesion. Not ON a lesion.

http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/

 

http://www.news-medical.net/health/Dermatitis-Herpetiformis-and-Celiac-Disease.aspx

http://www.cureceliacdisease.org/faq/if-im-on-a-gluten-free-diet-can-i-still-have-outbreaks-from-dermatitis-herpetiformis-dh/

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

Pay particular attention to the last 2 lines of this link:

http://emedicine.medscape.com/article/1062640-treatment

As to the Dapsone....... plenty here have tried it; almost all have had terrible side effects, some have not & it has been a great help to them. If you are dx'd with dh and Dapsone is offered to you, just do your due diligence & learn about the side effects of Dapsone. Also, regular blood tests (I think every 2 weeks) should be done as long as you are on Dapsone.

 

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Yeah this derm doctor I saw last pretty much quoted the Heath line website on the areas DH can be like it was a set thing.  And she did suggest that it was in my head and maybe I should talk to someone about my stress....I think she was not happy I brought her info and voiced an opinion.

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"other than IgA suggesting intolerance to gluten"

IGE tests are the ones for allergies. IgA is a celiac test. I have to wonder why the doctor ignored this positive result.

Can you get your GP to run a full celiac panel for you? You do sound like one of us. My Mom was told when I was young that my rash was 'poison ivy in my bloodstream' and I would suffer for another almost 40 years before I was diagnosed.  Doctors can be clueless. I hope you can get some relief soon.

 

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7 hours ago, ravenwoodglass said:

"other than IgA suggesting intolerance to gluten"

IGE tests are the ones for allergies. IgA is a celiac test. I have to wonder why the doctor ignored this positive result.

Can you get your GP to run a full celiac panel for you? You do sound like one of us. My Mom was told when I was young that my rash was 'poison ivy in my bloodstream' and I would suffer for another almost 40 years before I was diagnosed.  Doctors can be clueless. I hope you can get some relief soon.

 

The allergist is the one who said I couldn't possibly have any form of celiac because I didn't have painful stomach/intestinal symptoms.  I guess the bloating and constipation didn't really count as intestinal symptoms.  And because it wasn't a big number, he said that a gluten free diet "might" help.

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33 minutes ago, JJ May said:

The allergist is the one who said I couldn't possibly have any form of celiac because I didn't have painful stomach/intestinal symptoms.  I guess the bloating and constipation didn't really count as intestinal symptoms.  And because it wasn't a big number, he said that a gluten free diet "might" help.

Over 50% of diagnosed celiacs did NOT present with any GI symptoms. They had plenty of other symptoms but not GI symptoms. 99% of the doctors out there think you have to be dying with the big "D" continuously and in massive pain AND be skinny as a toothpick. This is far from the case. Celiacs come in all sizes including toothpick & gargantuan, all ages as celiac can present at any age, and GI symptoms are only ONE of the some 300 symptoms associated with celiac disease. There is also something called "silent celiac" where the person has NO symptoms at all yet their villi can be non existent. We've had a few of those on here. There was one gal whose sister was dx'd & so all her 1st degree relatives got tested. Our gal had no symptoms at all & yet upon testing her blood was off the charts & the endoscopic biopsy showed that she had zero villi. She was in much worse shape than her dx'd sister was! Why don't those people have any symptoms? It's a mystery. Personally, I think if they go long enough undiagnosed then symptoms will present; if nothing else, in the form of malnutrition from malabsorption. 

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After all this testing and different diagnoses that have not helped you, I think you should take control and this point and find out if gluten is the culprit.  I am not a medical person of any sort but had the pleasure of ending 10 years of misery involving rashes and hives by accidentally going gluten free by going on the Atkins diet.  There is nothing to stop you from trying a gluten free diet for 3-4 months or longer to see if your symptoms start to clear up.  I also did not have what would be classified as classic celiac symptoms. But when I went gluten free in 2002, there was not much info on celiac disease and gluten available.  Gluten free diet was the best thing that ever happened to me and since I am gluten free and stay that way, cannot be tested reliably other than genetics.  Good luck and hope you find some relief.  

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Well the punch biopsies both came back as spongiotic dermatitis.  So I really don't know what to do.  It improves on a gluten free diet but it's hard to tell what causes the actual flare ups since I have been pretty much gluten free since the beginning of the year.  I don't know if I accidently got into some gluten eating out or if gluten isn't actually the culprit and it's coincidence?  I thought I was doing way better and it's back and all over.  And all I got was a prescription steroid cream FML....that doesn't seem to make a difference one way or another.

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43 minutes ago, JJ May said:

Well the punch biopsies both came back as spongiotic dermatitis.  So I really don't know what to do.  It improves on a gluten free diet but it's hard to tell what causes the actual flare ups since I have been pretty much gluten free since the beginning of the year.  I don't know if I accidently got into some gluten eating out or if gluten isn't actually the culprit and it's coincidence?  I thought I was doing way better and it's back and all over.  And all I got was a prescription steroid cream FML....that doesn't seem to make a difference one way or another.

It's no wonder the biopsies came back negative for dh. You state yourself that you have pretty much been gluten free since the beginning of the year. You won't get a positive if you've been gluten free. In order to really find out, you would have to eat gluten every day for 12 weeks & THEN get a dh biopsy.

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Ugh!  So I need to eat gluten for 12 weeks?  Would it be the same for a blood test?  I started eating gluten last night.  I don't have any new rash yet but I find mine takes 24 hours minimum to show up.  I have talked to my doctor about doing the celiac panel and if I need to eat gluten longer, I will postpone the appointment.  On the bright side?  Beer and bagels are on the menu LOL 

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For the blood test or the dh biopsy you need to eat gluten for 12 weeks. For an endoscopic biopsy, you need to eat gluten for 2 weeks.

Yep, eat hearty! You might just be saying goodbye to gluten forever so eat all your favorite things. However, there are gluten-free replacements for everything!:)

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1 hour ago, squirmingitch said:

For the blood test or the dh biopsy you need to eat gluten for 12 weeks. For an endoscopic biopsy, you need to eat gluten for 2 weeks.

Yep, eat hearty! You might just be saying goodbye to gluten forever so eat all your favorite things. However, there are gluten-free replacements for everything!:)

Awesome!  I think I will be enjoying my favorite beer for the next few weeks then.

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1 hour ago, JJ May said:

Awesome!  I think I will be enjoying my favorite beer for the next few weeks then.

And the cakes, and the pies and the pastries, and the chinese takeaways and the...

Ok, I'll stop now!

I'll just add that given what you've posted above, ONLY once testing is over (because a positive blood test may lead to an endoscopy) then give the gluten free diet a proper go REGARDLESS of result. You may be like me and others, test negative but react positively to the diet. Non celiac gluten sensitive. 

Now go enjoy that beer!

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