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

Is It Worth Being Tested Again? Do I Have To Go Off The gluten-free Diet?

foodmakesmesick

By foodmakesmesick
in Dermatitis Herpetiformis

Recommended Posts

foodmakesmesick Rookie
foodmakesmesick
Posted

Hi all, thank you for reading this. I have many of the celiac symptoms, but a negative blood test and negative biopsy. One of the most intense symptoms was the rash (very itchy) I had right below my butt, on my elbows, legs, and chest. All areas looked like a faint red bumpy rash, except for near my butt where there were more distinct lesions. My doctor did a biopsy, and came back with the info that it looked like an allergic reaction.

I stopped eating gluten on Sunday, and now 5 days later my skin is SMOOTH. This is major because I haven't had smooth skin in that location for years (originally diagnosed with eczema 2 years ago that never went away). Side note: the rash does get much better while on prednisone even if eating gluten.

My questions are:

1. Would DH have shown up on a routine skin biopsy or should my Dr have ordered a specific test?

2. Would I have to start eating gluten again to be re-tested? (I don't want to as I'm alreay having some withdrawl symptoms and want to avoid the yo-yo on and off gluten again path) Right now, I have no outbreak.

3. Could it really just be eczema, etc and maybe just some food intolerance that I have eliminated with the gluten-free diet?

Again, thanks for your help!

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

1. Would DH have shown up on a routine skin biopsy or should my Dr have ordered a specific test? For DH it is important that the biopsy be done correctly. The lesion or red area should NOT be biopsied. You have to take a sample from normal healthy looking skin right next to the lesion. If your Dr. took an actual sample of the lesion/rash area, this was incorrect.

2. Would I have to start eating gluten again to be re-tested? (I don't want to as I'm alreay having some withdrawl symptoms and want to avoid the yo-yo on and off gluten again path) Right now, I have no outbreak. Yes for best accuracy.

3. Could it really just be eczema, etc and maybe just some food intolerance that I have eliminated with the gluten-free diet? Yes. It could be eczema as a result of "gluten intolerance". Or it could have been DH due to Celiac.

Either way the cure is the same = gluten-free diet.

It is up to you if you want to push for more testing and eat gluten again. It sounds like you have your answer. Congratulations!!

Archived

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

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


  • Member Statistics

    • Total Members
      131,778
    • Most Online (within 30 mins)
      7,748
    Megg Heath
    Newest Member
    Megg Heath
    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

    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      Gluten free stuff

      By Tammy Pedler · Posted

      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
      Do some people with Celiacs develop hypoglycemia?

      By Scott Adams · Posted

      While hypoglycemia isn't a direct, classic symptom of celiac disease, it's something that some individuals with well-managed celiac disease report, and there may be a few plausible explanations for why the two could be connected. The most common theory involves continued damage to the gut lining or nutrient deficiencies (like chromium or magnesium) that can impair the body's ability to regulate blood sugar effectively, even after gluten is removed. Another possibility is delayed stomach emptying (gastroparesis) or issues with the hormones that manage blood sugar release, like glucagon. Since your doctors are puzzled, it may be worth discussing these specific mechanisms with a gastroenterologist or endocrinologist. You are certainly not alone in experiencing this puzzling complication, and it highlights how celiac disease can have long-term metabolic effects beyond the digestive tract.
×
×
  • 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.