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All Tests And Biopsies Come Back Negative

elbar

By elbar
in Dermatitis Herpetiformis

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elbar Apprentice
elbar
Posted

I have had every test possible for celiac and/or DH and they have all come back negative. These include endoscopies, blood tests, biopsies, etc. I was diagnosed 58 years ago with celiac disease and, therefore, am concerned that if I can't be cured, as they once thought I was after 8 years on a special diet (they didn't know about gluten then - I just couldn't digest starches), then I still have it, regardless of these tests.

I seem to have the symptoms of DH and also have bouts of diarrhea but don't know how to put all the dots together to form a correct picture.

Any help would be appreciated.

elbar

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Electra Enthusiast
Electra
Posted
I have had every test possible for celiac and/or DH and they have all come back negative. These include endoscopies, blood tests, biopsies, etc. I was diagnosed 58 years ago with celiac disease and, therefore, am concerned that if I can't be cured, as they once thought I was after 8 years on a special diet (they didn't know about gluten then - I just couldn't digest starches), then I still have it, regardless of these tests.

I seem to have the symptoms of DH and also have bouts of diarrhea but don't know how to put all the dots together to form a correct picture.

Any help would be appreciated.

elbar

I'm a little confused (man I thought that was suppose to clear up after going gluten free lol). You say you were diagnosed 58 yrs ago, but all your test came back negative. How did you get diagnosed with no positive tests? They probably didn't have any tests for it back then, but I'm wondering why your current dr's would think that you would test positive if you were not consuming a lot of gluten. I'm just wondering if you are questioning it because your tests are negative or for other reasons.

Generic Apprentice
Generic
Posted

I thought my daughter had DH, but apparently she only has eczema. The tell tale signs apparently for DH is after the spot heals it leaves a purpleish scar where the spot was.

I didn't know that prior to taking her to the dermatologist. (she was really rude to us, like we were wasting her time). Her spots looked exactly like DH, but she only gets lighter skin scars.

I researched alot about it before taking her in and I never found any info that there was purple scars after it healed, if I would have known I wouldn't have wasted my time and money.

Did they do a biopsy on a spot or next to it? To get an accurate result it has to be biopsied next to the spot.

Are you currently eating gluten then? If so how long? You may just be gluten intolerant and not have celiac.

I guess the bottom line is, if you feel better when you cut the gluten out, stick with that and don't worry about what the tests say.

-Laurie

elbar Apprentice
elbar
Posted
  • Author
I thought my daughter had DH, but apparently she only has eczema. The tell tale signs apparently for DH is after the spot heals it leaves a purpleish scar where the spot was.

I didn't know that prior to taking her to the dermatologist. (she was really rude to us, like we were wasting her time). Her spots looked exactly like DH, but she only gets lighter skin scars.

I researched alot about it before taking her in and I never found any info that there was purple scars after it healed, if I would have known I wouldn't have wasted my time and money.

Did they do a biopsy on a spot or next to it? To get an accurate result it has to be biopsied next to the spot.

Are you currently eating gluten then? If so how long? You may just be gluten intolerant and not have celiac.

I guess the bottom line is, if you feel better when you cut the gluten out, stick with that and don't worry about what the tests say.

-Laurie

I'm sorry my question wasn't as clear as it could be. The reason I started thinking about celiac disease again after all these years was that my dermatologist diagnosed DH the first time I went to her with this weird skin rash. When my history was taken, she seemed quite definite about the diagnosis. Then, I went through all these tests and even though they are all negative, she thinks I still have DH. I don't want to go on such a life-changing diet unless I absolutely have to so I'm trying to find answers from members of this board.

Electra Enthusiast
Electra
Posted
I thought my daughter had DH, but apparently she only has eczema. The tell tale signs apparently for DH is after the spot heals it leaves a purpleish scar where the spot was.

I didn't know that prior to taking her to the dermatologist. (she was really rude to us, like we were wasting her time). Her spots looked exactly like DH, but she only gets lighter skin scars.

I researched alot about it before taking her in and I never found any info that there was purple scars after it healed, if I would have known I wouldn't have wasted my time and money.

Did they do a biopsy on a spot or next to it? To get an accurate result it has to be biopsied next to the spot.

Are you currently eating gluten then? If so how long? You may just be gluten intolerant and not have celiac.

I guess the bottom line is, if you feel better when you cut the gluten out, stick with that and don't worry about what the tests say.

-Laurie

I had eczema when I was a child and then it came back on and off as an adult and two of my children have eczema really badly. One of them has it so badley he itches his skin off. My eczema nor my two sons eczema look anything like my daughters DH. She only gets white scars too, but I would get a second opinion if I were you. Man eczama is aparantly like depression they just diagnose every single rash they can't explain as eczema. There may be others here who do have blistery eczema but NO ONE in my family has ever had eczama like that including my Mom and Dad who both have it.

Hmmmmmmmmmm how come they don't need a skin biopsy to diagnose eczema LOL!! Bad humor I know but I couldn't resist!!

Rusla Enthusiast
Rusla
Posted

Not always does DH leave scars. From most of my DH I do not have scars. The thing is the biopsy for DH has to be done from around affected area NOT on it. If the doctor didn't do it right it will come back negative. The only cure for Celiac disease is to be gluten-free for life. Being gluten-free for a some years then going back to gluten dows not cure you.

Electra Enthusiast
Electra
Posted
I'm sorry my question wasn't as clear as it could be. The reason I started thinking about celiac disease again after all these years was that my dermatologist diagnosed DH the first time I went to her with this weird skin rash. When my history was taken, she seemed quite definite about the diagnosis. Then, I went through all these tests and even though they are all negative, she thinks I still have DH. I don't want to go on such a life-changing diet unless I absolutely have to so I'm trying to find answers from members of this board.

Oh I see now. You were probably clear enough I just have brain fog half the time still lol!! I think it's great that you found a doctor that will diagnose you with DH even though you tested negative. I would say the only way to be sure now is to go gluten free and see if you respond. If you clear up then you probably have your answer. Good Luck!!

Try to eliminate iodized salt and see if it helps too. Here is what I've read on it!! My daughter seems to be triggered by Iodized salt.

"The rash is caused when gluten in the diet combines with IgA, and together they enter the blood stream and circulate. They eventually clog up the small blood vessels in the skin. This attracts white blood cells (neutrophils), and releases powerful chemicals called complements. They actually create the rash. Iodine is required for the reaction, so people with DH should avoid using Iodized salt."

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I'm not sure how reliable that source is because it's the only one I could find that clearly stated Iodized salt could be an issue. I have heard that many people on this board with DH have problems with Iodized salt.

Let us know what you decide!!

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Electra Enthusiast
Electra
Posted
I had eczema when I was a child and then it came back on and off as an adult and two of my children have eczema really badly. One of them has it so badley he itches his skin off. My eczema nor my two sons eczema look anything like my daughters DH. She only gets white scars too, but I would get a second opinion if I were you. Man eczama is aparantly like depression they just diagnose every single rash they can't explain as eczema. There may be others here who do have blistery eczema but NO ONE in my family has ever had eczama like that including my Mom and Dad who both have it.

Hmmmmmmmmmm how come they don't need a skin biopsy to diagnose eczema LOL!! Bad humor I know but I couldn't resist!!

Wow It appears that I am wrong on this one lol! Sorry about that. I didn't mean to give you false information. I started looking up eczema pictures just to be sure and there are different kinds of eczema, and some of them are blistery and some are even open scabs (that look just like a lot of the DH pictures) I guess it's possible that you do have exzema. Wouldn't that be a relief;) compared to Celiac!!

Generic Apprentice
Generic
Posted

Yes, I still think she has DH now that you mention it. It only pops up when she eats gluten. She is currently eating gluten so they can do a endoscopy on her in another month or 2. She started eating gluten again on thanksgiving. Trying to get her to eat it is an uphill battle. Can't say I blame her, but we need a diagnosis for the school.

-Laurie

Electra Enthusiast
Electra
Posted
Yes, I still think she has DH now that you mention it. It only pops up when she eats gluten. She is currently eating gluten so they can do a endoscopy on her in another month or 2. She started eating gluten again on thanksgiving. Trying to get her to eat it is an uphill battle. Can't say I blame her, but we need a diagnosis for the school.

-Laurie

I can understand the not wanting to eat. I tried and tried to get my 2 yr. old to eat gluten because she was going to the skin specialist this week and low and behold she woldn't eat enough to make her break out. I realized that her biggest breakouts have come when we have had to buy Iodized salt because the store was out of regular, so I'm going to go buy some Iodized salt this weekend and see if I can get her to react before her GI appointment!!

Good Luck and I hope your daughter feels better soon!!

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