Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

All Tests And Biopsies Come Back Negative

elbar

By elbar
in Dermatitis Herpetiformis

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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."

Open Original Shared Link

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.