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Omg Doctors Are Frustrating!

cindylou7

By cindylou7
in Dermatitis Herpetiformis

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cindylou7 Apprentice
cindylou7
Posted

So I had a biopsy last month. Very excited because it looked like the beginning of an "active" blister plus the surrounding skin. The results came back inconclusive with the suspicion of it being arthropod in nature. He actually suggested that i check my bed for bedbugs! I scheduled an appointment with the dermatologist who did the pathology report and discover that he only did a visual examination and not immunoflorecent test. WHAT!?!? That was what the doctor I had seen was supposed to order! Now I am preparing myself for another false negative because I have been gluten-free and he took a skin sample from an area where I often have breakouts but none active right now. :angry:

Anybody want to lay odds on the results here?

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pricklypear1971 Community Regular
pricklypear1971
Posted

Not really.

All you can do is try.

Yes, it's frustrating.

Did that doctor day he was ordering a DH test? He lied to you?

squirmingitch Veteran
squirmingitch
Posted

And once again incompetency strikes.

That's a perfect example of why there are so many self dx'd especially with dh. We are supposed to continue eating gluten & damaging our villi & bearing the burning, stinging, itching, pain of dh for YEARS trying to get someone to get all their P's & Q's right.

I'm so sorry Cindylou. I know how badly you really wanted that official dx. By the time we've gone through battles with all the incompetent doctors we at some point realize we know far more about dh than they do. And we self diagnose & are content with our self diagnosis.

cindylou7 Apprentice
cindylou7
Posted
  • Author

Thanks squirming and prickly! I just cannot believe the doctors. I actually asked the dermatologist today about the validity of the biopsy since I was gluten-free and didnt have any active DH and he said no the likelihood of a false negative was slim! If I had antibodies they should still be there. He also said the odds of DH being celiac were limited as well. He said there are a large population of DH patients that are not celiac. Again?!?!

squirmingitch Veteran
squirmingitch
Posted

It's just all in our heads right doc?

rosetapper23 Explorer
rosetapper23
Posted

That doctor is a complete idiot! DH is considered a clear diagnosis of celiac. What school of medicine did he graduate from?!

itchy Rookie
itchy
Posted

I would consider reporting this guy to the org that oversees physicians where you live. Being careful of libel, of course.

Unfortunately many of us have encountered physicians who aren't much better.

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jmb002 Newbie
jmb002
Posted

Oh my goodness....I just posted a thread "Does this look like DH to you?" because I had the EXACT same thing happen to me. I have had two biopsies from the same dang doctor and both times it came back arthropod (or scabies...YUCK) or drug reaction. Both times WRONG! I do NOT nor have I ever had scabies and no one in my house has had them either!!! My dermatologist took biopsies only from the most active parts of the lesions, so of course the biopsies were inaccurate. Not to mention he has put me on two rounds of steroids, so now I have to wait to have accurate tests done because my immune system is suppressed but I am STILL FREAKING ITCHING!!!! It makes me want to scream! In a month absolutely miserable and it feels like the doctors are not listening.

Since I posted on this forum and have gathered some information, I have made an appointment with a second dermatologist and am going to that appointment armed with piles of papers showing exactly where to biopsy, what my symptoms are, what symptoms are commonly seen in DH, my biopsy results from the other doctor, etcetera. Hopefully this will help me start out on the right foot and get this figured out sooner rather than later!! Good luck! I hope you find relief!

Jenn

cindylou7 Apprentice
cindylou7
Posted
  • Author

Thank you all for your support and encouragement! I have learned more from this forum than from any doctor that I've spoken to or any article I've read. There are so many people here who have a wealth of knowledge about DH.

squirmingitch Veteran
squirmingitch
Posted

We know because we live with it. Too bad we can't sentence doctors to a year of living with it. They'd learn how to listen to their patients real quick!

squirmingitch Veteran
squirmingitch
Posted

Thanks squirming and prickly! I just cannot believe the doctors. I actually asked the dermatologist today about the validity of the biopsy since I was gluten-free and didnt have any active DH and he said no the likelihood of a false negative was slim! If I had antibodies they should still be there. He also said the odds of DH being celiac were limited as well. He said there are a large population of DH patients that are not celiac. Again?!?!

Cindylou --- you need to put this one in the "Stupid stuff doctors say" thread:

https://www.celiac.com/forums/topic/89599-we-need-to-start-a-thread-on-stupid-stuff-doctors-say/page__st__165

pricklypear1971 Community Regular
pricklypear1971
Posted

Thanks squirming and prickly! I just cannot believe the doctors. I actually asked the dermatologist today about the validity of the biopsy since I was gluten-free and didnt have any active DH and he said no the likelihood of a false negative was slim! If I had antibodies they should still be there. He also said the odds of DH being celiac were limited as well. He said there are a large population of DH patients that are not celiac. Again?!?!

1) you really don't see as much mention of a gluten-free diet affecting gluten antibodies in skin in the U.S. literature. But if you don't have "active" DH how did he take a biopsy? How did he determine WHERE to take it?

2) I've read apx. 40% of DH patients test positive on blood work. Also, that DH patients are less likely to be GI biopsy positive. I've also read that newer blood tests, or specific tests are better to catch DH patients. I've also read that DH patients almost always have GI damage, but it can be patchier. But generally, not ALL of that info is contained in the same article.

Then, you get this weird statement "DH is strongly associated with Celiac".

Huh?

I am assuming this is because we don't always test + on blood and biopsy. I also see this more in sources outside the U. S., in the states, a DH dx is a Celiac dx.

cindylou7 Apprentice
cindylou7
Posted
  • Author

1) you really don't see as much mention of a gluten-free diet affecting gluten antibodies in skin in the U.S. literature. But if you don't have "active" DH how did he take a biopsy? How did he determine WHERE to take it?

2) I've read apx. 40% of DH patients test positive on blood work. Also, that DH patients are less likely to be GI biopsy positive. I've also read that newer blood tests, or specific tests are better to catch DH patients. I've also read that DH patients almost always have GI damage, but it can be patchier. But generally, not ALL of that info is contained in the same article.

Then, you get this weird statement "DH is strongly associated with Celiac".

Huh?

I am assuming this is because we don't always test + on blood and biopsy. I also see this more in sources outside the U. S., in the states, a DH dx is a Celiac dx.

He said that the antibodies should be still present in the skin. My last good outbreak was in July. He took a small sample (about two mm) near the last scarred area. Everything that I've read suggested any testing was more accurate while ingesting gluten.

I have significant GI symptoms but bloodwork came back neg after a nearly three week challenge. My GI problems are what had me suspecting DH. I posted a few pics on the picture thread. They look like the herpes sores people get on their mouth but mine are on my arm,etc. Both derms that I've seen said it looks like it could be DH.

I believe DH is celiac. But he described it as a small percentage of people with celiac have DH and many with DH are not celiac. I cant find any literature that talks about DH that doesn't connect it to celiac.

The first dr took the sample correctly. It just did not get examined correctly by the lab pathologist who is the dr that took the second biopsy.

I'll let you know next week!

  • 4 weeks later...
Karin7 Newbie
Karin7
Posted

Believe me I understand your frustration completely. I have watched Doctors bumble around and make situations worse for long enough that I no longer go to them. (unless I were to break a bone) and have been very pleased with the results of Naturopathy. Naturopaths believe most illnesses and diseases can be cured with food, herbal remedies and exercise. Doctors these days are only trained to stuff us full of toxifying drugs. We have to take charge of our own health, all the best to you on your journey!

So I had a biopsy last month. Very excited because it looked like the beginning of an "active" blister plus the surrounding skin. The results came back inconclusive with the suspicion of it being arthropod in nature. He actually suggested that i check my bed for bedbugs! I scheduled an appointment with the dermatologist who did the pathology report and discover that he only did a visual examination and not immunoflorecent test. WHAT!?!? That was what the doctor I had seen was supposed to order! Now I am preparing myself for another false negative because I have been gluten-free and he took a skin sample from an area where I often have breakouts but none active right now. :angry:

Anybody want to lay odds on the results here?

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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