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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.