Impossible to get diagnosis?

[allis]

Hi folks, I have type 1 diabetes and was having some serious digestive symptoms about ten years ago, and my endocrinologist (who sees a lot of type 1s with celiac) told me to assume I was celiac and be gluten free from now on. I’ve been doing so since then, but my skin response to gluten products has been getting worse and worse so I was hoping to get a diagnosis. However, my general practitioner and my endo both told me that to get a celiac dx I would have to eat gluten for six weeks for the antibody test to work! That would make me so sick and unable to work! Is there any way to get a celiac dx through a combination of other tests? Should I give up on seeking a dx and just be more careful about skin contact? Thanks in advance ❤️

[trents]

Welcome to the forum, allis!

By "skin response to gluten products" are you saying you develop a rash when you use lotions, creams, shampoos, etc. that contain gluten?

One of the classical symptoms of celiac disease is a skin rash known as dermatitis herpetiformis or "dermatitis herpetiformis" for short. Celiac disease is the only known cause for dermatitis herpetiformis. It has a distinct appearance. It has little blisters or pustules in the bumps. Does this sound like what you experience? Is so, it might be possible to get a punch biopsy done when you are having an outbreak. This would be an alternative to eating gluten. If your skin biopsy was positive for dermatitis herpetiformis you could be diagnosed with celiac disease on that basis alone. Apart from that, I know of no other way to get a diagnosis apart from returning to eating gluten for a period of weeks.

Edited January 6, 2025 by trents

[trents]

Sorry, meant to type "or dermatitis herpetiformis for short". What? Every time I try it, the abbreviation for this skin condition is converted to the full length term. I'm trying to type "D" followed by "H". 

Edited January 6, 2025 by trents

[allis]

Thank you, I’m very happy to be here!!

Yes, lately I get rashes and itching when I accidentally use topical skin products with gluten in them. I got a bad rash around my hairline after unknowingly using glutenous hairspray, and a near-full-body rash with a sea salt spray that I guess I rinsed off insufficiently in the shower. Neither looked like typical dermatitis herpetiformis to me based on the posts I’ve read here—both were just large patches, red and slightly raised, with no blisters to speak of. At least yet. The sea salt spray was used yesterday and I noticed the itching this morning, with the rash forming obviously by this afternoon and evening. 

[trents]

Do the skin care products that give you a rash list wheat as an ingredient or are you assuming from your reaction that they contain gluten? It is possible that not only do you have celiac disease, which is not an allergy but an autoimmune disorder, but that you also have a wheat allergy.

Edited January 6, 2025 by trents

[allis]

8 hours ago, trents said:

Do the skin care products that give you a rash list wheat as an ingredient or are you assuming from your reaction that they contain gluten? It is possible that not only do you have celiac disease, which is not an allergy but an autoimmune disorder, but that you also have a wheat allergy.

One had hydrolyzed wheat protein and the other had triticum vulgare starch, so both had gluten. After the second time it happened, I went through all of my other products to ensure they were gluten free and they are, so it’s definitely the gluten I’m reacting to. I’m not surprised this is happening now—I had a shaved head for the last 5 years but am now growing it out so I’m using products again when I hadn’t been for awhile! Both products were new.

So I should see an allergist to confirm the allergy? Is there a way to confirm the celiac without eating gluten for weeks and weeks?

[trents]

The latest "gluten challenge" guidelines for those seeking testing after having been on a gluten free diet for a significant period of time is the daily consumption of at least 10g of gluten for at least 2 weeks leading up to the day of testing. 10g of gluten is about the amount found in 4-6 slices of wheat bread. This would apply to either antibody testing or to endoscopy/biopsy. There has been a shift in thinking in these guidelines from lesser amounts of gluten over a longer period to more intense amounts over a shorter period in order to ensure valid testing. So, it may not be necessary to go at it for 6 weeks. But personally, I would go for more than two weeks to make sure. You don't want to waste the torture experience. I usually recommend four weeks.

 

Edited January 6, 2025 by trents

[trents]

I don't see any point in seeking allergy testing to determine if you have a wheat allergy. I think you already know that you need to avoid use of skin care/hair care products that contain wheat and it's derivatives. 

[trents]

One thing you might consider is getting genetic testing done to see if you carry one of both of the genes that have been identified as providing potential for developing celiac disease. About 40% of the population carry one or both but only about 1% of the population actually develops celiac disease. So, it cannot be used to diagnose celiac disease but it can be used as a rule out measure. If you don't have one of the genes, but you know that gluten causes you issues, then you can confidently concluded you have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. Your physician can order the gene test and there are also third party companies that you can do this through where you order a home test kit and take a cheek swab sample and send it back to them for analysis. I think the home test kits cost around $200.

Edited January 6, 2025 by trents