Daughter recently diagnosed with Celiac and I am questioning my results...

[Brianne03]

Our daughter was recently diagnosed with Celiac. Everyone else in the family was subsequently tested. My results are the only ones I'm not confident with, despite my doctor saying they were normal. I guess I'm just looking for peace of mind because my research shows that TTG-IGA numbers greater than 10 U/mL are considered positive for Celiac and mine was 11.6 U/mL. I am happy to be wrong and not have Celiac, but need reassurance and expertise either way because my PCP said he was just going by the labs consideration of normal and wasn't sure beyond that. Could the test be indicative of other autoimmune issues, beyond Celiac, because I do have Hashimoto's? 

In addition to having another autoimmune disease, I have had a chronic case of "dermatitis" in my genital/rectum area since 2020. I've seen tons of specialists, used many creams, taken pills and vitamins, have had biopsies, allergy tests (patch and skin prick), changed up all sorts of things, etc. with no real answers or solutions to make it go away. I have resorted to using a daily topical cream just to keep it at bay because otherwise I often feel like I am on fire...red, sore, bleeding, and oh so itchy! 

The other thing that makes me question my results, is that I did a 23andMe genetic test years ago and it shows I have two copies of a genetic variant indicative of Celiac disease. Just looking for some clarification; thank you!! PS, I've tried figuring out how to attach screenshots of my test results, but no luck.

[Scott Adams]

First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions.

Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease.

Here are a few steps you might consider to gain peace of mind:

• Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further.
• Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline.
• Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy.

As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation.

Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it.

[Brianne03]

Thank you for your valuable feedback; calling to make an appt. for myself today!

[Scott Adams]

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

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"...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;

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

 

 

[Beverage]

As Scott suggests, look into dermatitis herpetiformis. Also the rash there could be from SIBO small intestinal bacterial overgrowth or candida. If your regular doc won't investigate those possibilities, consider going to a naturopathic doc or integrative medicine doc.