Can Someone Have Dh And Not Have Celiac Disease?

[ktneal]

I am getting conflicting information and need to know if someone can be diagnosed with dermatitis herpetiformis and have a negative result on a endoscopy biopsy for Celiac Disease. Does anyone know the answer to this question? Thanks!

[Fiddle-Faddle]

I'm still pretty new to this myself, so my answer is not real information, just my own experience. I believe I had an episode of DH in January. I had 2 endoscopies in the past because of 25 years of reflux, but as far as I know, the doctor didn't observe anything unusual except acid burns on my esophagus. I demanded bloodwork from an unbelievably horrible dermatologist (I think I wrote about it on my very first post). My IgG was through the roof--but my IgA was normal. (BTW, I'm still not sure what that means--anybody?)

I don't know enough about all this to tell you what exactly I have, but I do know this--when I went off gluten, I felt so much better in almost every way, I don't care what the diagnosis is or is not. I didn't even realize I had cramps or bloating til they went away--and I notice my kids aren't complaining about occasional tummyaches anymore, and my middle child's eczema has disappeared. The one way I do NOT feel better is that I actually seem to have more brain fog now than before I went off gluten, but that may very well be my thyroid, and I'm supposed to get that tested next week. I've had Hashimoto's for years, and I notice that there's an awful lot of us who have gluten and thyroid issues concurrently.

I may at some point try a slice of sourdough bread, or once in a while cook something with real soy sauce--but for now, I don't want to rock my boat. As I'm not craving bread any more, and I'm finding it surprisingly easy to cook gluten-free, and I read what some people on this board have been through, eatingg bread just doesn't seem to be worth it!

Was your DH diagnosed by biopsy? Does it go away when you stop eating gluten? Sorry I don't have any definitive info for you, but I hope this helps a little!

Sorry to hear you had DH, but the way--horrible, isn't it?

[MySuicidalTurtle]

I believe you don't have to be a Celiac to have DH.

[psawyer]

Also, a negative endoscopy is not probative. It means that no villous atrophy was found in the tissue sampled. It does not prove that there is no damage present elsewhere. A positive biopsy is conclusive, but a negative one is not.

[TestyTommy]

If you have DH, you have celiac. Period.

Many people with DH do not have any GI symptoms. About 20%of people with DH have a negative intestinal biopsy.

Like Fiddle-Faddle said, the real test for celiac is whether you get better when you quit eating gluten.

[jerseyangel]

Dr. Green said in his new book that if you have a diagnosis of DH, you have Celiac.

[Rusla]

Not all Celiacs have DH but ONLY Celiacs have DH.

[Pegster]

I had a positive biopsy for DH and my dermatologist told me that means I am a Celiac. The blood work was inconclusive, and I refused the small intentine biopsy because I had already bought-in to going gluten free for life. What difference would another invasive procedure make? So if you have a positive DH biopsy, you have Celiac (as several people have already stated).

[Lisette]

I had a positive biopsy for DH and my dermatologist told me that means I am a Celiac. The blood work was inconclusive, and I refused the small intentine biopsy because I had already bought-in to going gluten free for life. What difference would another invasive procedure make? So if you have a positive DH biopsy, you have Celiac (as several people have already stated).

O.K. Would you all please give me your input as to how many different ways there are for this DH rash to look? I've examined photos at different websites and believe my mother and brother and son have this, but there rashes are not so profuse as these photos and are different from each other's, also!

Any quick descriptions would be appreciated!

Thanks,

Lisette

[Rusla]

I believe it can look many different ways. Mine is an itchy and sometime sore but mostly itchy blisters. They look almost like white pimples at first but they have clear fluid in them. I started to get them in the corners of my mouth when glutened and down below my bottom lip, now they go up to my nose and under and on top of my left eyelid. They are far from pretty and itch like mad. They are horrible to look at and I feel like a leper with them. But that is one of the first signs of extreme glutening to me along with D and cramps.

[Pegster]

My diagnosis came after I complained to my dr about the itchy and somewhat painful red blisters on my elbows and knees. Mine never looked white. They were reddish and contained a clear fluid most of the time. They were a lot like tiny little hives. When I got them on one side of my body, they almost immediately showed up in a symmetrical pattern on the other side of my body. Mine was never as bad as the pictures that I've seen so I consider myself lucky. I was just to vain too live with bumpy, itchy elbows.

[Lisette]

My diagnosis came after I complained to my dr about the itchy and somewhat painful red blisters on my elbows and knees. Mine never looked white. They were reddish and contained a clear fluid most of the time. They were a lot like tiny little hives. When I got them on one side of my body, they almost immediately showed up in a symmetrical pattern on the other side of my body. Mine was never as bad as the pictures that I've seen so I consider myself lucky. I was just to vain too live with bumpy, itchy elbows.

Thanks, you guys for your quick responses! It's just so new and overwhelming for me to believe my whole family has this! Their sores are flat, red, kind of oozy sometimes. My mom has them mostly on her scalp and my brother has them on his face, shoulders, & calves. My son has always had a chronic rash all over his thighs since a baby that no doctor has ever been able to cure. I ordered the Enterolab complete panel test for him today and am anxious to do it for him since the nurse there said his seizures that developed a year and a half ago may stop if he has gluten issues!

It's been a long journey, reading every website I can about seizures, since our neurologist won't help us explore any causes at all and just throws drugs at our son. He even has the white spot on his brain which I read on this site can be a sign of Celiac! He just dismissed it as probably a glitch in the MRI! I hate doctors!

Don't ever give up on trying to cure yourselves or your loved ones- I am so impressed with the knowledge and courage and perserverance I find on this forum. You all should be so proud of yourselves!

Take Care,

Elaine

[Pegster]

Let us know how your tests come out. Good luck!

[Rusla]

My diagnosis came after I complained to my dr about the itchy and somewhat painful red blisters on my elbows and knees. Mine never looked white. They were reddish and contained a clear fluid most of the time. They were a lot like tiny little hives. When I got them on one side of my body, they almost immediately showed up in a symmetrical pattern on the other side of my body. Mine was never as bad as the pictures that I've seen so I consider myself lucky. I was just to vain too live with bumpy, itchy elbows.

The centres of mine are usually white, but around them is red and icky and itchy.

[mouse]

I did not have a biopsy. My GP diagnosed them after the blood test for Celiac. Mine have always been on my fingers, were white blisters with clear liquid in them. They itched something awful. By the time I had to go to the specialist for the Morphia Scleroderma, I had been gluten-free for almost nine months and they were gone. They have only come back once and that was when I delibertly ingested gluten about a year after my diagnosis.

[J.P.]

DH, Celiac and Non-Celiac Gluten Intolerance are all caused by Gluten Intolerance. The symptoms and lab test results are different but the need for the Gluten Free diet what is need for all of them.

People with DH can take medications to make the symptoms decrease, but the cause is still there. I also read that even without villi damage you will still have vitamin malabsorption.

If you have any of the three you should follow a gluten-free diet. I'm trying to convenience a colleage with DH who was diagnosised the same month I was diagnosed with Non-Celiac Gluten Intolerance to go gluten-free. He takes Dapasone and still cheats, but at least he is starting to make the transition.

J.P.

[J.P.]

Thanks, you guys for your quick responses! It's just so new and overwhelming for me to believe my whole family has this! Their sores are flat, red, kind of oozy sometimes. My mom has them mostly on her scalp and my brother has them on his face, shoulders, & calves. My son has always had a chronic rash all over his thighs since a baby that no doctor has ever been able to cure. I ordered the Enterolab complete panel test for him today and am anxious to do it for him since the nurse there said his seizures that developed a year and a half ago may stop if he has gluten issues!

It's been a long journey, reading every website I can about seizures, since our neurologist won't help us explore any causes at all and just throws drugs at our son. He even has the white spot on his brain which I read on this site can be a sign of Celiac! He just dismissed it as probably a glitch in the MRI! I hate doctors!

Don't ever give up on trying to cure yourselves or your loved ones- I am so impressed with the knowledge and courage and perserverance I find on this forum. You all should be so proud of yourselves!

Take Care,

Elaine

I have Non-Celiac Gluten Intolerance, but I also have problems with rashes. Most of them went away when I went Gluten Free. But other food intolerances cause me to have them, oranges (citric acid) and blue no. 1. I also read that DH may take a while to resolve on the gluten-free diet, but it will resolve. I worry because I have DQ2 and DQ8 meaning my oldest has DQ8 and my twins have DQ2. All have mild eczema occasionally and my oldest has been saying my stomach hurts a lot more often in the last month. I'm hoping that the studies that say breast feeding helps are right. My oldest breast feed for 4 months and my twins for 15 months. It was very hard for me to change my diet, just kept getting it accidentally (the new labeling requirements are so helpful but not everyone has used up their old stock yet). I have reduced my children's intake, but I have not been able to force a switch without any labs telling me they have it.

How is it that these labs can do the tests without a doctors request? I know we can't test without an order and we can't give out lab results to patients (I'm a Medical Technologist). I'm tempted to have one of those food intolerance panels run, but I wonder what sort of accrediting agencies inspect these facilities. Can't help it, I've been involved with too much quality assurance.