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

Beginning To Suspect Something Is Up
0

5 posts in this topic

Hello everyone-

I have been reading this forum for the past couple of weeks and wanted to post while I wait for my blood test/Enterolab test/DNA test. It's been very helpful.

I'm beginning to suspect I am intolerant or sensitive to gluten, or possibly have celiac. I have not stopped eating gluten. Yet.

Here are my symptoms:

- Ferritin level of 4. Four. For several years.

- Bloating, extreme gas, large stinky stools that float, uncomfortable feeling in abdomen for hours (not after every meal, but many meals).

- Vitiligo that has emerged in the past year

- Irregular periods

- Asthma

- Geographic tongue

- Dry skin (I live in Florida where it is humid)

- Fibroids

Does anyone have any thoughts? I would appreciate any feedback. I'm preparing to do a gluten-free trial very soon.

Thank you all for your help and have a good evening.

Tam

0

Share this post


Link to post
Share on other sites


Ads by Google:

I received my test results...and now I need more testing.

Basically the Endomysial Antibody IgA, the tTg IgA and the tTg IgG tests were normal.

But my total Immunoglobulin A Serum was low at 72 (my lab has a range of 91-414 as normal).

0

Share this post


Link to post
Share on other sites

Some of your symptoms do match up to a gluten intolerance; I'm sorry you haven't been feeling well.

Witha a low serum IgA, you are really limited in what celiac tests will work for you. You could be a celiac but because you are low in IgA, those tests won't tell you much if anything. The only tests you haven't done yet are the DGP IgG and the endoscopic biopsy.

Once you are done your testing, I think it's wise that you have decide to do a gluten free trial. As you probably know, Non-Celiac Gluten Intolerance (NCGI) is much much more common than celiac (another form of gluten intolerance) and every bit as nasty and uncomfortable. When you go gluten-free, please try to give it a few months. Some of my symptoms (joint pain) didn't get better until after 6months on the gluten-free diet.

Some of your symptoms sound like hypothyroidism too (I only mention it because I have this and some symptoms sound familiar). If after you've looked hypothyroidism (or hashimoto's) you want to do some testing there, request:

TPO Ab (should be about non-existant)

TSH (should be near a 1)

Free T4 and Free T3 (should be in the upper 50-75% of your lab's reference range)

Best of luck to you. I hope you find some answers.

0

Share this post


Link to post
Share on other sites

hi tamlush

im afraid i cant help you with the results - im pretty new here myself. but just to say welcome and hope you get the answers your looking for. not everyone on here is diagnosed celiac, theres a few of us who are self diagnosed.

my results all came back normal- basically all they found was reflux!!! im waiting for allergy tests but they take ages here (uk) so i went gluten and dairy free. you need to check what extra tests they are doing because you need to be eating gluten to test positive for it. if you go gluten free now you could scupper your chance of a positive diagnosis.

ive not found the diet too bad and the upside is - no more reflux and stomach is not as bloated oh and no anxiety :)

0

Share this post


Link to post
Share on other sites

hi

soz when i replied there was no other post showing, good luck with everything :)

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
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined