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

Anxiously Waiting For Blood Results As Well As Skin Biopsy Results

mamat78

Recommended Posts

mamat78 Apprentice
mamat78
Posted

I am a new member but have been reading quite a bit on this site....I have had "atopical dermatitis" for the last 10 years. Last summer, I started dealing with awful upper stomach issues (bloating, hearburn, indigestion, pain) which comes and goes (bouts will last about 3 weeks and then be good for several months). I finally went to the dr again recently because my skin was so bad and had been since december. I could not clear up my rash with using cortisone 2 times per day for over 3 months. 

I asked for a celiac screening referal because my aunt (moms sister) has celiac disease and thought that I should be tested. 

The night before my test, I looked up typical symptoms and insted of "skin rash" I came across DH (dermatitis herpetiformis) and my skin is exactly what is described when I look up that particular dermatitis. When I went to the dr originally, I got a stronger cortisone cream that did not even touch the rash. It continued, as bad as ever. 

I went back 2 days ago, mentioned DH to the dr who took a swab of my legs and perscribed me Dapsone. I have only been on it 24 hours. (50 mg once per day). I am still waiting on my celiac screening test. 

 

I wish I knew the answers and cannot wait until I find out but so far, here are my symptoms that seem to relate...

 

upper stomach (bloating, gassy, heartburn, indigestion)

infertility (we have 4 kids through adoption)

stools are normal but very oily or fatty looking at times

very irritable at times (this could be reltated to having 4 kids!)

severe skin rashes 

tingling and toes and feet falling asleep

 

I am not even sure what I want to ask other than, does my description sound like it could be a celiac diagnosis coming my way? I am so anxious to hear. I wish it wouldnt be so long for the results! 

 

 

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

Celiac.com Sponsor (A8-M):


SarahRN482 Newbie
SarahRN482
Posted

I am a new member but have been reading quite a bit on this site....I have had "atopical dermatitis" for the last 10 years. Last summer, I started dealing with awful upper stomach issues (bloating, hearburn, indigestion, pain) which comes and goes (bouts will last about 3 weeks and then be good for several months). I finally went to the dr again recently because my skin was so bad and had been since december. I could not clear up my rash with using cortisone 2 times per day for over 3 months. 

I asked for a celiac screening referal because my aunt (moms sister) has celiac disease and thought that I should be tested. 

The night before my test, I looked up typical symptoms and insted of "skin rash" I came across DH (dermatitis herpetiformis) and my skin is exactly what is described when I look up that particular dermatitis. When I went to the dr originally, I got a stronger cortisone cream that did not even touch the rash. It continued, as bad as ever. 

I went back 2 days ago, mentioned DH to the dr who took a swab of my legs and perscribed me Dapsone. I have only been on it 24 hours. (50 mg once per day). I am still waiting on my celiac screening test. 

 

I wish I knew the answers and cannot wait until I find out but so far, here are my symptoms that seem to relate...

 

upper stomach (bloating, gassy, heartburn, indigestion)

infertility (we have 4 kids through adoption)

stools are normal but very oily or fatty looking at times

very irritable at times (this could be reltated to having 4 kids!)

severe skin rashes 

tingling and toes and feet falling asleep

 

I am not even sure what I want to ask other than, does my description sound like it could be a celiac diagnosis coming my way? I am so anxious to hear. I wish it wouldnt be so long for the results! 

 

I'm new here too, and also hoping for some insight and answers. I haven't been diagnosed officially, but I also have major skin issues, which a dermatologist recently told me was "follicular eczema". I can't say that I'm convinced though. I really hope that you get your test results soon and at least know what you're dealing with. 

SeekingSarah Apprentice
SeekingSarah
Posted

I to both of you...skin issues is what finally made me think Celiac also...saw Jennifer Esposito on the Today Show mention it and currently I have a bad outbreak on my scalp. Always seem to have spots on my face...was dx with IBS a few years ago...questioning that now. I have appt with GI on Monday.

 

There are others that will most likely welcome you with a lot more information than I have at this moment...just wanted to say hello!

EmiPark210 Contributor
EmiPark210
Posted

Hang in there! The time between getting the test done and finding out can be pretty stressful. And welcome!

 

Be sure to stay on gluten through getting your tests back because if they come back negative then you are probably in the clear (though gluten-free never hurt anyone). But if your tests come back positive, then you'll have to do a gluten challenge and start eating it again. And believe you me, that's hard to do. I'm waiting to have my biopsy done in April so I can eat the appropriate amount of gluten but going back on is almost harder than getting that blood test positive message. 

 

I hope your tests come back conclusive and you can start feeling better soon! After you get them back, feel free to post them if you're confused and we'll help you make sense of it all. :D

sisterlynr Explorer
sisterlynr
Posted

Mamat78:  Welcome to this site.  It has been so helpful to me!

 

Did your doctor ask you to start a gluten free diet in addition to prescribing Dapsone?   A few years back if you were given Dapsone with a gluten-free diet and your rash cleared, the doctors did not feel a EGD w/biopsy was necessary.  That was proof enough that a patient had Celiac- DH.  My PCP had me start the gluten-free diet the same day as the Dapsone.

 

My PCP and Dermatologist which happens to be the head of dermatology at a university have diagnosed me with DH.  I have had 6 biopsies with various results due the other derms taking them of the lesions.  The last 2 biopsies were from the skin next to a lesion and direct immunofluorescence.  He felt since I was already gluten-free since Oct 2012 the test would not be positive but charted due to the above and all other indications of Celiac, DH.  I am on 50 mg of Dapsone per day and felt a difference within 72 hours.  I am checked once a month to be sure the Dapsone is not damaging my liver, kidneys or lowering my blood level.

 

I wrote on a post somewhere on here. . . I don't care if I ever see a positive test result, I know from the results of Dapsone and diet, the rash is DH.  I will tell you this, it is difficult to not get cross contaminated, especially if you eat out and Dapsone will not heal the DH.  Only the gluten-free diet will allow healing.  The Dapsone will calm the itch, sting and burn of the rash, for sure.

 

Good luck and it sounds like you have great doctor.   :)

sisterlynr Explorer
sisterlynr
Posted

Oops . . . just meant to update.

 

Good luck and it sounds like you have great doctor.   :)  BTW, my first biopsies showed 3 different "dx"  of Grover's Disease of skin (every doctor has asked me, "What is that?"  LOL  Eczema, Folliculitis, due to taking biopsy of the lesion.  I vowed never to eat gluten again . . . not even for a test.  Proof is in the pudding for me with Dapsone and diet.  So my case has been quite turned around.

mamat78 Apprentice
mamat78
Posted
  • Author

Oops . . . just meant to update.

 

Good luck and it sounds like you have great doctor.   :)  BTW, my first biopsies showed 3 different "dx"  of Grover's Disease of skin (every doctor has asked me, "What is that?"  LOL  Eczema, Folliculitis, due to taking biopsy of the lesion.  I vowed never to eat gluten again . . . not even for a test.  Proof is in the pudding for me with Dapsone and diet.  So my case has been quite turned around.

THanks for the comments! Just in reading tonight I have realized that my doc took the biopsy completely wrong. She did it over the entire rash. I will wait on the results but will likely have to get it done again. My doctor is good but very unfamiliar with DH so new territory for her. I hope to have an idea if I respond well to dapsone, even before the test results come back. I am not off of gluten yet although very very tempted. 

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

Celiac.com Sponsor (A8-M):


mamat78 Apprentice
mamat78
Posted
  • Author

I am not sure if there is a change yet but I have gone over 14 hours without feeling the need to scratch my legs off! I think the dapsone may be kicking in which makes me wonder, is it DH? Nothing else has touched the rash in 3 months. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.