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

Help Needed, Testing Question


janmar63

Recommended Posts

janmar63 Newbie

I have been suffering for 7 months with a severe itching/rash issue. I saw my dermatologist beginning 6 months ago. She has not been able to figure out what my issue is. 2 months ago, I began to attempt an elimination diet based on a book I picked up. I noticed improvement after 2 weeks or so. Basically, by playing with my diet, I have come to the conclusion that I am allergic to flour or perhaps celiac. If I don't eat it, I am fine. If I eat flour, within 4 hours, I begin to itch all over my body. I went to see my family doctor today to request that he order the testing for celiac for me. He told me I have to be eating wheat for at least a few straight days for the test to have proper results. I left there determined to get myself back on a diet including wheat. I had bread with dinner and now I can not sleep from all the itching. How can I possibly eat it for several days? I am already miserable!!


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



Celiac.com Sponsor (A8-M):



Deaminated Marcus Apprentice

Welcome janmar63,   

 

Go chat with the ladies in the  Dermatitis Herpetiformis section.

 

They are very knowledgeable. 

 

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

 

 

................................................................................................................

 

Added:

 

The quick on and off skin response sounds like a wheat allergy.

 

You might want to be refered to an allergist to be tested to see if you have a wheat allergy

as this would be easier to confirm or eliminate than Dermatitis Herpetiformis testing. 

nvsmom Community Regular

For blood testing, you need to be consuming 1-4 gluten servings (ie. slices of bread) daily for 4-12 weeks, 2 slices of bread / day for 6 or more weeks seems pretty common. If you are already eating bread pretty steadily, you don't need to add on more time, but if you eat "gluten light" or have gone without gluten for a length of time, you should probably do this gluten challenge for a while.

 

If you have dh at the moment, you might want to see if you can get a skin biopsy (taken from beside the rash I believe). if you get a positive biopsy, it could save you some time and some discomfort if you have to keep eating it.

 

I agree with Marcus that a wheat allergy could be a factor too.

 

I hope you figure it out soon.  Best wishes.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    2. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    5. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
×
×
  • 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.