Celiac challenge awful - DH rash biopsy for diagnosis?

[Bobs1234]

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

[trents]

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]

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]

@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 November 23, 2022 by knitty kitty
Typo correction

[Bobs1234]

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!