Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Newbie
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,667
    • Total Posts
      921,670
  • Topics

  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,666
    • Most Online
      3,093

    Newest Member
    epalmer9
    Joined