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

Should I get tested for Celiac Disease?


mlec

Recommended Posts

mlec Newbie

I wanted to come back and give an update. I decided to have my rash biopsied when I got home from vacation and the results thankfully came back positive for DH. What really prompted me to go ahead with that was how reliably the rash would worsen within mere hours of eating gluten. I figured it would be the easiest way for me to definitely know and since I could actually see the damage I was pretty confident by eating gluten until the appointment something would show up. Luckily my experiments of going multiple days here and there in the weeks prior to the test didn't effect the results. (Obviously that probably isn't recommended and I was taking a chance at inconclusive results by going ahead with it so I'm fortunate I got the positive results I expected.) The dermatologist wants me to see a GI doc but for now I'm holding off on doing that because of all the reasons I mentioned previously. It is my understanding that DH qualifies me for the tax write off for food and the small intestine biopsy would just be a technicality and see how much intestinal damage is present. I will follow up with my family doc soon to do blood work and check for any deficiencies.

Since finding out I've done pretty well. I did discover gluten in my shampoo after wondering why my elbows had flared up when I hadn't eaten gluten that day. I had gluten unintentionally this weekend in some sushi and I'm recovering from that at the moment but it hasn't been too bad compared to how I've felt most days for the last year and a half while eating it. I did connect with a lady in my ED recovery group who has celiac and we have been talking about navigating gluten free in the context of recovery/remission from anorexia. I think part of me was scared I'd become afraid of food again but I think as long as my only rule is to replace gluten I will be fine. 

Now my latest gluten discovery is in my home hair color. I was about to color my grays when I read the label and noticed one ingredient was wheat gluten. I guess I'll exchange that for something different. If I was getting it done at a salon I probably wouldn't worry because of the way they rinse it out with your head tipped back in the bowl but at home I think it's harder to keep the water from running into my mouth accidentally. If I hadn't had the shampoo incident I probably wouldn't be so cautious. I'm sure some people can relate to trying to get well and not wanting to make things worse again!

I hope everyone here is doing well!


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I'm glad you got the biopsy done & have a definitive answer! Welcome to the club you never wanted to be a member of but you will persevere & and flourish. :)

mlec Newbie

Thanks squirmingitch.:P

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,667
    • Most Online (within 30 mins)
      7,748

    NormanW
    Newest Member
    NormanW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      @Joe R Thanks for clarifying! That's what I've heard, too, about Italy, but I've never been, sad face. Almost no one on these boards would recommend the approach of your GI doc, and would instead stick with yours. (Maybe if a "glutening" causes so many discomforts and inconveniences that it just overwhelms your life, and you have nothing else to do...maybe.) But, generally in the clinical setting, coming off prednisone requires a taper, as suddenly quitting can cause problems. Anyway, good for you!
    • Joe R
      I am 58 years old and was diagnosed two years ago with Celiac Disease based on an EGD showing lymphocytic infiltrates and blunted villi in my duodenum. Lab work shows a severe IgA deficiency. Is it worthwhile to consult with an immunologist regarding the IgA deficiency?  I don’t seem to have any chronic sinus issues or infections but feel like I should get more information regarding the consequences of not having IgA from an expert. I live in Atlanta and surprisingly I have yet to find an immunologist that specializes in this area. Does anyone have a suggestion as to who I con consult with?  I’m sure that telemedicine consults can easily be accomplished these days if I can’t find a local expert. 
    • Jmartes71
      I was diagnosed in 1994 with celiac disease by Kaiser with biopsy and was told to stay away from wheat and I'll be just fine.I have and Im not.Had my first baby in 94 and my tolerance level was horrible.Having a celiac episode we all know how its horrible with the vomiting and digestive issues. Never googled because internet wasn't around.Still pushing through that's my normal.In 2001 was busy with my sick baby that went through the ringer with severe chronic Neutropenia it was horrible times he out grew it now almost 24 years old this month. In 2007 still digestive issues had blood drawn and have many food allergies.  told my primary im celiac ( i had primary Dr 25 YEARS up til May 2025.My savior was tramadel thats what my doctor gave me and thats what ive been on up til 2023 stopped when i got covid for the 3rd time to give my body a break. Been through  every test.Gi Dr as well who said I wasn't. celiac in 2024 Ive been glutenfree for 30 years at the time now 31 years. Im going to Standford this year and had breath test and sibo which is positive. I have ulcers on my body and I asked how when it was diagnosed as staph 4 years ago, not wanting to admit its from my dismissed celiac condition. Currently dealing with that.My last job was a bus driver last day of work was in March 2023. I was released from my job because of being out so long dealing with health issues. Disability is not helping at all, no income stressed.Currently doing more test and will be going under again next month with new GI doctor at Standford. Depressed because Im literally falling apart and it seems as if menopause is activating it more.Not eating what im not supposed too,always feeling full, tired, eye sensitivity to sunlight, constant bumps in back of my throat, pain down my left leg. Going through more test.Why is it so hard to get help or is it because I was dismissed all these decades?Should I take legal action?Im Currently not doing well which is keeping me from holding a job and im getting older.I can't push through anymore.Im very much into natural supplements that help but im still declining with one thing after another. What miracle will help so I can get back in the production line to make money.
    • Joe R
      That was the suggestion from my GI doc but I never book the medicine and maintained a strict gluten free diet. Actually, Italy is much more sensitive to gluten free diets than the US, I found. 
    • plumbago
      @Joe R are you saying that while traveling in Italy as a person with Celiac disease, you are eating gluten-containing foods and taking prednisone to dampen down the flares? Plumbago
×
×
  • Create New...