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
      131,600
    • Most Online (within 30 mins)
      7,748
    rita jean
    Newest Member
    rita jean
    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

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.