Diagnostic Question

[dlt688]

Hi All - 

Thanks in advance for any thoughts or responses. 

For roughly 4 years I've been dealing with a few health issues. Mostly GI related, but also muscle twitching and pain.  I've also been dealing with some infertility and just had my second failed embryo transfer.  I have been on and off gluten thinking that it might be the culprit.  I've had so many tests -- my ANA always comes back high, but I don't meet the diagnostic criteria, as far as I know, for any other autoimmune condition.

During the pandemic I fell of the gluten wagon -- hard.  I requested a celiac panel and my results are as followed (TLDR, the only abnormal result was the tTG IgG):

tTG Ab,IgG - 23 u/mLu/mL  Flagged as High (<6 No Antibody Detected, > OR = 6 Antibody Detected)

tTG Ab,IgA - <1 u/mLu/mL (normal)

IgA - 161 mg/dL (normal)

Gliadin Ab IgA - 8 U (normal)

GLIADIN(DEAMIDATED) AB, IGG  - 3 U (normal)

 

I have not gotten scoped and can't until November -- assuming I'm not pregnant at the time.  My doctor was pretty dismissive of the idea that this could be celiac disease, but agreed to the genetic testing. I'm waiting on those results now.

I'd be interested to hear others' thoughts and what they would do.  Would you consider yourself positive or remain on gluten until after the endoscopy. 

Thanks again. I feel like I'm at a loss, and the positive test is the first thing that's pointed me in any direction of help. Having it dismissed was tough. 

 

[Scott Adams]

Due to the fact that you're actively trying to get pregnant it would make sense for you to go gluten-free now, because if you do have celiac disease (one positive blood test like the one you shared is enough to make this a good possibility), it could definitely affect your pregnancy. A gluten-free diet, as long as your supplementing, getting enough fiber, and eating a lot of whole, unprocessed foods, would be a perfectly healthy alternative.

If you decide to go the biopsy route, perhaps you should hold off on the pregnancy until after you get all results? You mention that you fell hard off the gluten wagon...do you mean gluten-free wagon? If you were gluten-free for a long time it can also make your blood test results much lower than they might have been had you been eating gluten daily for the ~8 weeks before the test. Likewise, you need to keep eating gluten if you do the biopsy.

Ultimately it's your call, but be sure to talk to your doctor about these options. Also, it is VERY strange that your doctor would be dismissive of celiac disease, given that your tTG levels were nearly 4 times the normal range. This is a very specific test for celiac disease. Perhaps you can ask him to explain what would cause this? I'd love to hear their answer.

 

[dlt688]

1 hour ago, Scott Adams said:

Due to the fact that you're actively trying to get pregnant it would make sense for you to go gluten-free now, because if you do have celiac disease (one positive blood test like the one you shared is enough to make this a good possibility), it could definitely affect your pregnancy. A gluten-free diet, as long as your supplementing, getting enough fiber, and eating a lot of whole, unprocessed foods, would be a perfectly healthy alternative.

If you decide to go the biopsy route, perhaps you should hold off on the pregnancy until after you get all results? You mention that you fell hard off the gluten wagon...do you mean gluten-free wagon? If you were gluten-free for a long time it can also make your blood test results much lower than they might have been had you been eating gluten daily for the ~8 weeks before the test. Likewise, you need to keep eating gluten if you do the biopsy.

Ultimately it's your call, but be sure to talk to your doctor about these options. Also, it is VERY strange that your doctor would be dismissive of celiac disease, given that your tTG levels were nearly 4 times the normal range. This is a very specific test for celiac disease. Perhaps you can ask him to explain what would cause this? I'd love to hear their answer.

 

Yes - I fell off the gluten free wagon. I’ve been eating gluten for the last few months. I’m not sure if that makes it less likely that I have celiac disease. Thanks for your response.