Celiac Diagnosis from Bloodwork Only?

[TraceyG]

I would love some opinions. My Tis.Transglut.Ab IgA results were 29.9, with the normal range being 0-14.9.  My PCP said I have celiac disease, based on these results. I asked for a referral to GI, but they can't get me in for 6-9 months! I think I will start gluten-free now, and begin eating gluten again for at least 1 month prior to the biopsy.

I know the GI biopsy is the gold standard, but is it reasonable for my PCP to diagnose celiac with just the blood results? I do not have classic celiac symptoms, but have struggled with some mystery peripheral neuropathy and joint pain for years now. Looking at symptoms, I have suspicion for family history of undiagnosed celiac (mom with lactose intolerance, aunts with sjogren's and non-hodgkin lymphoma). I am 39. I don't think I will be someone who can easily and quickly tell the difference in my body from not eating gluten (or getting glutened once gluten-free), so I feel that gluten-free trials will be tricky.

If it's relevant, I surely consume smaller amounts of gluten and occasional bread, but my diet is vegan and fairly free of gluten (maybe why bloodwork numbers weren't higher?)

 

[Wheatwacked]

Hello @TraceyG, welcome. 

  I know it is hard.  Giving up gluten is like losing a lifelong friend.  But in this case it is not a friend.   Your doctor is your friend and be thankful he is proactive with you. There is no need for the biopsy. Posistive is positive.  Unless you are looking for proof you are not.  Be sure to ask about vitamin and mineral deficiencies tests from the doctor.

If you are vegan for the health benefits, reconsider.

To get the daily Adequate Intake of Coline (between 500 mg and 3500 mg) you would need to eat 10 cups of cooked brocolli.

     If you continue to eat gluten, even small amounts, it will come back on you.  You may experience up to 15 days of withdrawal from the gluten and cravings may be strong.  Gluten activates the opiod receptors, numbing you to the pain.  Gluten is addictive.  Gluten Addiction  Eating a little gluten is like playing with matches.

     Recent statistics say 40% of first degree relatives have Celiac Disease, also.

[TraceyG]

@Wheatwacked thanks for your input. I am fully committed to being gluten-free if I truly have celiac disease.  I suppose my question is more so wondering if that blood test means I definitely have celiac disease. I had one doc look at the results and tell me to ignore them if I don’t have the classic celiac symptoms. The next doc (a few months later, when viewing the same results) said the results were suspicious and might mean gluten sensitivity, but then had her nurse call me later the same day to say I actually have celiac disease based on the results. So my care team seemed a little unsure. It sounds like, from this forum, that the general consensus is any abnormal blood results indicate celiac.

[TraceyG]

@Wheatwacked thank you for checking in about choline. I do meet me recommended amount on a plant-based diet already, per my nutritionist. Thankfully, I am not intolerant to soy and the cruciferous veggies I enjoy! 

[trents]

There are some causes besides celiac disease for elevated tTG-IGA, such as cow's milk protein, some other bowel diseases, NSAIDs, a certain blood pressure med and parasitic infections but the chances of that being true are not very high compared to the cause being celiac disease. And even with CMP (Cow's Milk Protein) most of those cases involve people who already have celiac disease. 

 

[RMJ]

Another good indicator for celiac disease without getting a biopsy would be if your antibody levels go down after you’ve been strictly gluten free for 6-12 months.

[Wheatwacked]

I found this article very a very clear explanation of test results with example cases.  I especially liked this line at the end. "In an effort to justify why we can go against the result of a positive test, we ask “how positive is it’? It’s like getting a positive pregnancy test back and asking “how pregnant am I?”

I think it answers some of your specific questions.

Are You Confused About Your Celiac Disease Lab Results?

[TraceyG]

@Wheatwacked ha! That sums it up nicely. That’s the part I wasn’t clear on. Thank you !

[trents]

The tTG-IGA test as a specificity of around 95%. In other words, the chance that something else is causing your positive tTG-IGA result is around 5%.