Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

1St Celiac Md Visit

Hornet

Recommended Posts

Hornet Rookie
Hornet
Posted

I saw Dr Leffler one of the big guns in Boston. Gave a list of all the symptoms I'm having. Not sure what I have. Had a systemic allergic reaction to a drug I've taken 100's of times and everything makes me itch. Have been gluten-free since May which he did not think was very long. He did several blood tests including the genes and wants me to do the camera pill to find out why I am losing iron.

Has anyone had such allergic reactions it doesn't matter what you swallow? Won't have results for a few weeks. Feeling discouraged with so many health issues and need a smarty to put the pieces of the puzzle together. Thanks in advance for any thoughts.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I saw Dr Leffler one of the big guns in Boston. Gave a list of all the symptoms I'm having. Not sure what I have. Had a systemic allergic reaction to a drug I've taken 100's of times and everything makes me itch. Have been gluten-free since May which he did not think was very long. He did several blood tests including the genes and wants me to do the camera pill to find out why I am losing iron.

Has anyone had such allergic reactions it doesn't matter what you swallow? Won't have results for a few weeks. Feeling discouraged with so many health issues and need a smarty to put the pieces of the puzzle together. Thanks in advance for any thoughts.

Well, wait and see what the Big Guns say.

Do you have specific questions?

ravenwoodglass Mentor
ravenwoodglass
Posted

Your having been gluten free since May may very well effect your testing. Also be aware that if they are only checking for DQ2 or DQ8 that you can have celiac or issues with gluten even if you don't have those genes.

Does the diet seem to be helping you? It does take some time to heal so even if you have only seen a small amount of improvement do keep with the diet for a bit and read as much as you can here so you learn about cross contamination and the non-food related sources of gluten.

Ask any questions you need to and let us know how things go with your new doctor. Not all are as knowledgeable about celiac as we would like, even the experts in the field, as more and more is being learned every day.

To answer you questions about allergies before I was diagnosed I seemed to be allergic to almost everything. When tested for true allergies (gluten intolerance and celiac are not allergies) I was allergic to 98 out of 99 things tested for. My allergist said it was because celiac had my immune system in 'hyperdrive' and that many of my allergies would likely resolve. They did.

Archived

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

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


  • Member Statistics

    • Total Members
      131,265
    • Most Online (within 30 mins)
      7,748
    V Arnold
    Newest Member
    V Arnold
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Kan-101

      By RMJ · Posted

      It is more likely code for “we think there really was a good response to the treatment, but it was small or in a small percent of subjects so it would take a large clinical trial to try to prove it.”
    • Dana0207
      Celiac symptoms

      By Dana0207 · Posted

      Thank you so much for your replies. Luckily the rash went away when I completely swore off gluten. It took several months but I have not had a flare in months. So a biopsy is no longer possible. The itch was terrible and apart from bleaching my skin the steroid lotions and potions did nothing. The Gliadin is for accidents and shall be a part of my travel kit from now on. This past exposure has made a me a little leery about eating anything that was not cooked in my kitchen or a dedicated gluten-free restaurant. As much as I used to love baked goods, I am cured and have become quite the gluten free baker to the point that friends and family forget that my cakes/cookies/and bread are not "real". I guess I will have to wait for the new blood test to come out to get confirmation but I have a suspicion that the rash was dermatitis herpetiformis.
    • Jmartes71
      Nateral remedies

      By Jmartes71 · Posted

      Hello, I just wanted to share with the frustration of skin issues and seeing dermatologist and medications not working for years, I did my own healing experiment. As of last week I have been taking a drop internally under the tongue of Vetiver and putting on topically on sores Yellow/Pom.I am seeing a extreme difference at a rapid time.Im also noticing my nails a little harder. Ive always been into natural properties because I feel its safer for the body.I know short time, but really seeing a difference. I also feel the the trapped gases that causes bloating helps break down as well.Curious if any body else can benefit from and has tried. Products is made by Doterra by Dr Hill
    • Scott Adams
      Is Caputo gluten free flour really free of gluten?

      By Scott Adams · Posted

      We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/
    • Scott Adams
      Celiac symptoms

      By Scott Adams · Posted

      I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • Create New...