Jump to content

  • 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):

Celiac challenge awful - DH rash biopsy for diagnosis?

Bobs1234
 Share

Recommended Posts

Bobs1234 Newbie
Bobs1234
Posted

Hi there

Long story short- I had an ovarian cyst this summer. My GP said symptoms weren't necessarily consistent for a cyst though (vomiting, nausea, diarrhoea, severe abdominal pain, weight loss, loss of appetite, bloating) and symptoms lasted after the cyst had gone. My GP suggested cutting gluten from my diet to reduce inflammation in my gut. For 3 weeks, I stuck strictly to a gluten-free diet and was finally starting to feel better. Then on weeks 4/5, I accidentally consumed gluten 3 times and the abdominal pain, bloating nausea, and vomiting came back. My GP suggested last week that I do the gluten challenge for at least 6 weeks so they can do antibody testing for celiac. 

I am on day 6, have been vomiting 1-2 times a day, awful nausea, abdominal pain, bloating. I have also developed a rash over my hand and body is itchy all over. I don't know if I can do 6 weeks of this, I have lost 7% of my body weight already and have missed so much time off work. They did a TTg test yesterday and it came back negative but that is hardly surprising as I haven't been eating gluten diet for 6 weeks. I am exploring other options..

If they did a private biopsy for DH on my hand would I still have to eat gluten for 6 weeks?

Thank you so much

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, Bobs1234!

Rather than going by a time table of being on gluten for X number of weeks, the key to getting an accurate biopsy with DH would be to have the biopsy taken while you are in the midst of an active outbreak. That can be very tricky since it is usually difficult to schedule appointments with specialists on the spur of the moment. The other key to getting an accurate biopsy for DH is to make sure the sample is taken from an area adjacent to a bump, not right on it. It would be a good idea to check out the derm doctor's experience ahead of time as not all know what they are doing when it comes to DH.

It is a good sign that your GP advised you to engage the gluten challenge for at least six weeks. Sounds like the GP might be up on celiac disease. Most are not.

Scott Adams Grand Master
Scott Adams
Posted

Welcome @Bobs1234!

Given how severe your symptoms are, and the fact that you've already confirmed that they are due to gluten ingestion, do you actually need a formal diagnosis of celiac disease to stay on a gluten-free diet? To me, it sounds like you'll probably stay gluten-free not matter what the doctors tell you, right?

At the very least you likely have non-celiac gluten sensitivity for which there are not tests but ~10x more people have it than celiac disease, and would need to be gluten-free if this is the case. 

knitty kitty Grand Master
knitty kitty
Posted
(edited)

@Bobs1234,

Welcome to the forum!

Have you considered asking your doctor for a genetic test for the most common Celiac genes?  You don't have to be eating gluten for that because your genes don't change.  Having the genes shows you have a propensity to develop Celiac Disease.  It's not a confirmation of active Celiac Disease, but could help your doctor understand why you are not showing positives on blood tests.  Anemia can make one have false negatives.  

The gastrointestinal symptoms are similar to those I had when I was deficient in Thiamine (Vitamin B 1) and had Gastrointestinal Beriberi.  

See if your symptoms are similar to Gastrointestinal Beriberi and discuss with your doctor.  Supplementing with Thiamine is safe and nontoxic.  Thiamine is water soluble and quickly lost in diarrhea or urine.  Thiamine supplements are available over the counter.  Thiamine administration by IV is an option if your doctor agrees.  

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/#!po=31.2500

My doctors didn't recognize Thiamine deficiency.  When one has malabsorption due to Celiac Disease, thiamine deficiency is possible.  Checking for nutritional deficiencies is part of proper care for Celiac people.

Hope this helps! 

Keep us posted on your progress! 

 

Edited by knitty kitty
Typo correction
Bobs1234 Newbie
Bobs1234
Posted
  • Author
3 hours ago, knitty kitty said:

@Bobs1234,

Welcome to the forum!

Have you considered asking your doctor for a genetic test for the most common Celiac genes?  You don't have to be eating gluten for that because your genes don't change.  Having the genes shows you have a propensity to develop Celiac Disease.  It's not a confirmation of active Celiac Disease, but could help your doctor understand why you are not showing positives on blood tests.  Anemia can make one have false negatives.  

The gastrointestinal symptoms are similar to those I had when I was deficient in Thiamine (Vitamin B 1) and had Gastrointestinal Beriberi.  

See if your symptoms are similar to Gastrointestinal Beriberi and discuss with your doctor.  Supplementing with Thiamine is safe and nontoxic.  Thiamine is water soluble and quickly lost in diarrhea or urine.  Thiamine supplements are available over the counter.  Thiamine administration by IV is an option if your doctor agrees.  

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/#!po=31.2500

My doctors didn't recognize Thiamine deficiency.  When one has malabsorption due to Celiac Disease, thiamine deficiency is possible.  Checking for nutritional deficiencies is part of proper care for Celiac people.

Hope this helps! 

Keep us posted on your progress! 

 

Thank you so much, great advice - will definitely look into both of these this options!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...