How to confirm

[1268918]

Hello, thank you to anyone who is willing to share their knowledge and experience to help point me in the right direction!

 

I have had digestive issues and migraines since I was about 14 years old. In my early 20’s my doctor found that I had B12 anemia. My grandma had this also, so I didn’t question further and began supplementing, which solved some of the symptoms. In my late 20’s I had a new doctor who recommended that I try a gluten free diet, as gluten intolerance can often be the cause of low b12 absorption. She was right and after becoming gluten free, I no longer needed to supplement the b12 and many other digestive issues resolved. Fast forward to 35, I became Catholic and started receiving the host on a weekly, then daily basis. I have not had any explosive digestive issues come back, but I do have a rash on the back of my calves and behind my knees that seems a lot like dermatitis herpetiformis, brain fog, anxiety, weakness, exhaustion, loss of appetite, bloating, and dehydration. My question is: given all of these symptoms while consuming such a small amount of wheat, would a blood test be reliable without doing a full gluten challenge? Or what would be the best way to confirm celiac? And how do I find a doctor that knows what they are doing?

 

I’m happy to answer any follow ups. Thanks so much! Madeline

[trents]

Welcome to the forum, @1268918! I doubt such a small amount of gluten as contained in the communion wafer would produce enough celiac antibodies in the blood to produce a positive reaction in a blood test. However, celiac disease is the only known cause of DH. So, if you could get a skin biopsy done in conjunction with an outbreak that might work. But you would need to find a dermatologist who knows how to biopsy for DH correctly. The trick is to sample between the bumps, not on them.

Having said all that, the plethora of other classic celiac symptoms you are experiencing makes me wonder if you are getting gluten from sources besides the once a week communion wafer. Keep in mind that food companies can and do change their formulations such that what was once gluten free is no longer. All pills and supplements also need to be checked as wheat starch can be used as a filler. And you may have developed greater sensitivity over the years.

 

[Scott Adams]

This article might be helpful, but best to skip the wafer and just take the wine:

 

[1268918]

Trent and Scott, I appreciate your input so much!

I’m inclined to just move forward with diet and lifestyle changes as though I do have celiac’s. Would you say there is any benefit of getting that confirmed with a doctor’s diagnosis? If so, any tips on finding a dermatologist that knows what they are doing?

[Scott Adams]

There may be a benefit if a diagnosis helps you to stay on a gluten-free diet, as some people without a formal diagnosis may lean towards cheating on their diets. 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[trents]

10 hours ago, 1268918 said:

Trent and Scott, I appreciate your input so much!

I’m inclined to just move forward with diet and lifestyle changes as though I do have celiac’s. Would you say there is any benefit of getting that confirmed with a doctor’s diagnosis? If so, any tips on finding a dermatologist that knows what they are doing?

No benefit unless you are in the UK or some country where they offer government stipends and healthcare follow-up for those officially diagnosed with celiac disease. Also, some people psychologically need the official diagnosis to stay on track with  their gluten free diet and not rationalize it all away.

As far as finding a dermatologist who knows what they are doing when it comes to performing biopsies for DH, I would suggest contacting several dermatology clinics in your area by phone/email and ask the receptionist to forward a question to their practitioners, something like this, "Do any of your dermatologists have experience with doing biopsies for dermatitis herpetiformis?" The ones showing enough interest to reply may be ones you should consider making an appointment with. Or, contact the closest school of medicine that offers that specialty and ask for recommendations.