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

Does This Sound Like I Have Celiac Disease?

Melly250

By Melly250
in Dermatitis Herpetiformis

Recommended Posts

Melly250 Newbie
Melly250
Posted

Feb 1, 2014 I noticed bumps on my elbows and the itching was so intense! I also saw some on my hip bones on both sides and again intense itching. I saw a dermatologist and she diagnosed me with Eczema and gave me a prescription for a steroid cream. I used it for a  few days and it seemed to help. But then I started getting a burning feeling and bumps on my shoulders and the back of my neck. It itched like crazy. I itched them into scabs. I did not see any oozing. I also got them on the sides of my butt, my thighs, in which I itched bruises and broken blood vessels. My back has bumps up and down my spine. I went and saw my Dr. a few days ago and she ran some bloodwork and said she would not test for Celiac because its a waste of time, that is mostly comes up negative. She referred me to a dermatologist which I need to try to make an appt with. As of yesterday I have noticed alot less itching and no new outbreaks. I have to say the only other symptoms I have are bloating and stomach distention, tired and VERY anxious ALL the time. Does DH subside for a bit? For 2 days now the itching is minimal BUT I also have refrained from scratching for a few days even though it really itched. Any ideas??

 

 

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

celiac  testing  a waste  of time!!!!! I suggest  a new  doctor.....  When  you  get  to  a  derm doc  please  ask again to be  tested for the  full celiac  panel of  blood  work....I know of  someone  whose  doctor  said  just  about the  same thing, so  for a year  of  running  to different  doctors  &  going  crazy with  rashes  &  at times  extreme  itching  & getting  depressed   over   the  skin issues  ,  finally  a  doctor  agreed  to test  & found  full blown celiac... Sometimes  I  want to  scream at these  uniformed  doctors.....

good luck

LauraTX Rising Star
LauraTX
Posted

Yep, like mamaw said, time to change doctors.  Depending on how heavily you were brushed off, you can go back and say you want to be tested for celiac and see if they will do it this time, but I recommend seeing a different doctor.  Another thing you can do is to ask your primary care doctor to run celiac testing on you just to be sure before you go about finding another dermatologist or a GI doctor.  Do note that you need to be eating gluten for the blood tests to be accurate, so if you are thinking about going gluten-free don't do so until your testing is completely done.  If preliminary tests show a positive and you go see a GI doctor, don't go gluten-free until after an endoscopy is done, if applicable.  Feel free to read around the forum here and ask any further questions.

Melly250 Newbie
Melly250
Posted
  • Author

I have not started a gluten free diet. I still feel itchy but it's not as intense. Can I still get a skin biopsy if no new lesions but itchy?

squirmingitch Veteran
squirmingitch
Posted

I have not started a gluten free diet. I still feel itchy but it's not as intense. Can I still get a skin biopsy if no new lesions but itch

 

Maybe. But your best bet is when you have fresh, new lesions. And try your best not to scratch them before you get the biopsy b/c scratching quickly destroys the pattern the lab will be looking for.

Archived

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

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


  • Member Statistics

    • Total Members
      132,114
    • Most Online (within 30 mins)
      7,748
    Cheryl Elliott
    Newest Member
    Cheryl Elliott
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
×
×
  • 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.