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New Question About Dh Diagnosis

cindylou7

By cindylou7
in Dermatitis Herpetiformis

Recommended Posts

cindylou7 Apprentice
cindylou7
Posted

Okay, so according to research and a thread posted by eatmeat4good and started by squirmingitch...

I have to eat gluten for a while to get a good diagnosis for DH...

What the heck!

I am happily cruising along with my gluten-free diet only to find that I need to go off to get a diagnosis...

Again, can I say WTH???

As much as you guys are helping...I am mad as he#%!

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rosetapper23 Explorer
rosetapper23
Posted

Since your chances of getting a proper diagnosis for DH are about nil, why bother eating gluten and having a dermatologist mess up the biopsy? I have absolutely NO faith in dermatologists....and even though I've been a member of this forum for many years, I've seen very few people post here that have reported that their DH was confirmed by a dermatologist. Save yourself the aggravation and remain gluten free. Your DH will go away, and there will be much happiness in the world....

jlaw Apprentice
jlaw
Posted

Just to add another voice, I have had a positive dh result from a skin biopsy recently. I know there are different opinions out there about whether a confirmed dx is necessary, but for me it has been very helpful. As long as your derm takes a punch from clean skin beside a lesion and not actually on one (although my derm took both and I had to 'remind' him to take it from beside) there shouldn't be an issue. I wasn't aware of having to be on gluten. My understanding is that if you have the rash, you have the IgA deposits needed for a biopsy. But I haven't researched it. Good luck

squirmingitch Veteran
squirmingitch
Posted

Okay, so according to research and a thread posted by eatmeat4good and started by squirmingitch...

http://www.celiac.co...__1#entry816366

I have to eat gluten for a while to get a good diagnosis for DH...

What the heck!

I am happily cruising along with my gluten-free diet only to find that I need to go off to get a diagnosis...

Again, can I say WTH???

As much as you guys are helping...I am mad as he#%!

Cindylou, You posted on the 27th of May on this thread:

http://www.celiac.co...499#entry799499

if you scroll down to the 3rd response to you on that thread you will see that I DID tell you that you need to be consuming gluten even for the dh biopsy. So I guess you just didn't read it well or didn't remember.

I copy & paste my reply to you from that thread:

And you also need to be consuming gluten even for the dh biopsy. And there's a 40% (I think 40% -- or close to it) false neg. on the dh biopsy even when performed correctly.

Post your results like shroomie says.

And I echo beachbirdie --- you don't need anyone's permission to eat gluten free.

squirmingitch Veteran
squirmingitch
Posted

You know Cindy, I was reading back on that thread of yours in May & combining that info. with the info. you've posted on this forum you really do have symptoms consistent with celiac. And I gather that you don't so much want a dx for yourself but more to be able to tell others you have a dx so they will shut their mouths. I can understand that. And while I'm not in favor of a person lying about things they have; this disease is, to me, cause for the exception. Only we know just how infuriating & next to impossible it is to get an official dx. There is so much involved in it & so many crooks & turns & meanwhile you are supposed to be eating they very thing that IS the disease & causes such horrid damage to our bodies & minds. The medical community makes it worse by being for the vast majority uninformed & also refusing to even consider the possibility of celiac or dh. The good docs who know about this disease are rare indeed. It's weird that from what I've read on here it seems a lot of ppl get dx'd by accident --- silent celiacs who had no idea & no complaints in the realm of celiac & somehow a doc decides to test them for it & BING! they have it as well as a dx.ohmy.gif

One could never explain to the average person all the twists & turns in trying to get a dx of this disease. They wouldn't be able to grasp it. Heck, it's hard enough for us to grasp it when we've been researching for long periods!

So my point is..... you know what you have, you have no doubt, you have improved gluten-free, you have your answer. Others really have no right judging & grilling you on whether you have an official dx or not. It's not really any of their business. Do they go around asking ppl who say they are diabetics if they have an official dx? Do they go around asking ppl who say they have angina if they have an official dx? So tell ppl who get "that way" with you that you do. Period. It's not their place to judge if you have a disease they know nothing about just b/c they have never heard of the disease.

Just my 2 cents worth.

cindylou7 Apprentice
cindylou7
Posted
  • Author

You know Cindy, I was reading back on that thread of yours in May & combining that info. with the info. you've posted on this forum you really do have symptoms consistent with celiac. And I gather that you don't so much want a dx for yourself but more to be able to tell others you have a dx so they will shut their mouths. I can understand that. And while I'm not in favor of a person lying about things they have; this disease is, to me, cause for the exception. Only we know just how infuriating & next to impossible it is to get an official dx. There is so much involved in it & so many crooks & turns & meanwhile you are supposed to be eating they very thing that IS the disease & causes such horrid damage to our bodies & minds. The medical community makes it worse by being for the vast majority uninformed & also refusing to even consider the possibility of celiac or dh. The good docs who know about this disease are rare indeed. It's weird that from what I've read on here it seems a lot of ppl get dx'd by accident --- silent celiacs who had no idea & no complaints in the realm of celiac & somehow a doc decides to test them for it & BING! they have it as well as a dx.ohmy.gif

One could never explain to the average person all the twists & turns in trying to get a dx of this disease. They wouldn't be able to grasp it. Heck, it's hard enough for us to grasp it when we've been researching for long periods!

So my point is..... you know what you have, you have no doubt, you have improved gluten-free, you have your answer. Others really have no right judging & grilling you on whether you have an official dx or not. It's not really any of their business. Do they go around asking ppl who say they are diabetics if they have an official dx? Do they go around asking ppl who say they have angina if they have an official dx? So tell ppl who get "that way" with you that you do. Period. It's not their place to judge if you have a disease they know nothing about just b/c they have never heard of the disease.

Just my 2 cents worth.

Thanks Squirmingitch, I think you hit the nail on the head. I am frustrated by the not "knowing" but KNOWING that I have a disease that affects me negatively when I ingest gluten. It would be easy to just start telling people, "I have celiac disease", but the little angel on my shoulder tells me I am lying without proof of that statement. I'd feel better with proof... Confirmation that I am not a hypochondriac is important to me. The diet is easy and I feel sooooooo much better physically and emotionally, but I still would like the diagnosis to confirm what I already know.

mikyraso Rookie
mikyraso
Posted

I have a question for everyone. I really feel like I am about to GO OUT OF MY MIND so if you can please HELP I would appreciate it. Here.is a little back story first

I have been gluten-free since Jan of last year when my Daughter was Dx with celiac disease (she had a endo). I had been having GI issues for about 2 months prior to her Dx so it wasn't a hard choice to make. I also wanted to support her as she is only 7. Then in May of 2011 I was Dx with IBS.(had a Endo in May which was neg for celiac disease) I have a 3 yr old daughter. The whole family has had blood tests for celiac disease and they were all NEG.

The middle of June my youngest daughter started itching her head and developed a rash on the back of her neck. The end of June I started having SEVER itching on my head accompanied by a rash on the back of my neck which spread to my shoulder blades.The beginning of July my 7yr old developed the itching and rash at her hairline.

I have just had 2 biopsy for DH. The derm. I went to said they see a lot of DH patients and what I have "looks" like DH. I am pretty sure that if my tests come back pos. then the girls have the same DH. Do you think that would be the wisest assumption? Also since my 7 yr old already has confirmed celiac disease and I have her on a gluten-free diet what else should I look for as a culprit?

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eatmeat4good Enthusiast
eatmeat4good
Posted

If what you have is DH, it is commonly very sensitive to even traces of gluten. So you would need to look for sources of CC. Also, some people with DH need to limit iodine. With your daughter's though, you would want to talk to their Dr. about the safety of limiting their iodine intake. It may not be necessary if you are totally gluten free but some people have to. The rash is an indication that I have been glutened. The back of the neck at the hairline is a common place for DH to show up. You might consider limiting iodine for yourself by going to thyca.com. Iodine can cause the antibodies to remain active in the skin and can prevent the lesions from healing. I do think that is a wise assumption that if you are positive that the girls have it too. But let the same Dr. look at them and diagnose all of you. And advise you on whether it is safe to limit iodine temporarily or not.

You might get more answers if you start a new thread with your post.

squirmingitch Veteran
squirmingitch
Posted

mikyraso, you really need to stop jumping on other peoples threads & just start your own brand new thread. If you want help, you need to stay in one place where everyone can read all your info. together at one time otherwise we get bits & pieces here & there.

For readers information mikyraso began here beginning at post #18

https://www.celiac.com/forums/topic/94164-what-the-heck-is-going-on/page__st__15

squirmingitch Veteran
squirmingitch
Posted

mikyraso, I have requested the moderators split this thread off where you came in on post #7 & re-title it so you can have your own thread & therefore receive more help.

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This topic is now archived and is closed to further replies.

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