Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Newbie

Jinxy'sMom

Recommended Posts

Jinxy'sMom Newbie
Jinxy'sMom
Posted

Hi to all. My name is Heather, and I am expecting to get a celiac disease diagnosis shortly. I had some tests done at the beginning of the year, the IgA and IgG were mildly positive, but the tTg and the rest were neg. At that point I had no symptoms other than a vitamin B deficiency for years and years. I have in the last 6 months developed what appears to be DH - it looks exactly like the pictures I've seen. It comes and goes, but seems to be staying for now. Based on what I've read, I think my case is relatively mild since it's only a little itchy. I'm going in to see my GP on Friday to ask for a referral to the gastroenterologist. I don't think it's necessary to have the skin rash biopsied, since most things seem to be pointing to celiac disease. I also have T1 Diabetes which I understand is a risk factor.

Does anyone think I should see a dermatologist as well?

Much as I would rather not have ever heard of celiac disease, I have learned that it's best to face up to health problems and deal with them straight up. I look forward to becoming an active member and making some new friends.

Oh, and that's my Jinxy in my avatar, ain't he a handsome fellow?

Jinxy's proud mom

Heather

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Actually, a DH diagnosis might be less expensive, easier and less invasive. According to all the celiac experts, if you have DH you have or will have celiac. The recent NIH consensus conference on celiac even wrote into its report that a biopsy is not necessary for anybody diagnosed with DH because that in itself is a diagnosis of celiac. And the prescription is the same -- go gluten free.

richard

Jinxy'sMom Newbie
Jinxy'sMom
Posted
  • Author

That's interesting, Richard, thank you for your reply.

I'm obviously not as informed as others, but I'm concerned because I've read that quite a few folks get misdiagnosed from skin biopsies not being done correctly. Right now the rash isn't too bad, but I want to get rid of it as soon as possible. When I ended things w/ the GI earlier this year, he wasn't opposed to an endoscopy and I kinda feel like it'd be best to have a concrete diagnosis, plus, who knows how long this has been going on? What if there are some cancer cells in there? Wouldn't it be wise to check just in case?

Jinxy'sMom

lovegrov Collaborator
lovegrov
Posted

If your doctor wants to do the endoscopy to check for other things as well that would be between you and him.

A warning that the small bowel biopsy isn't always accurate either. Doctors take too few samples or the samples they do take miss the damage or the lab can even misread what they get.

richard

Jinxy'sMom Newbie
Jinxy'sMom
Posted
  • Author

Definitely food for thought. I have to wonder, though, if my ins will cover my gluten-free sessions w/ my dietician if there's not an absolute dx of some kind.

Guess we'll see on Friday. This'll be pretty much the first time I've met this doctor.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat. In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue. A wedge...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    3. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    4. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    5. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442
    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...