Blood Tests, Diagnosis, And Dithering

[hannely]

Hello! This week marks a year since I got blood results suggesting I have celiac disease. I got the results just a couple days after discovering I was pregnant (hooray!!). I didn't want to stay on gluten for even a second longer, given my concerns about my baby's health, so I didn't bother with a biopsy, figuring I could always do a gluten challenge later.

My initial blood test showed a TTG-IGA result of 110. We repeated the test about six months later, and it was down to only 8. To me that suggests that gluten was the cause.

BUT BUT BUT now I'm dithering. Before getting these results, I never really considered that I could have celiac disease. My doctor only ordered the test because I have/had thyroid issues, which she says often go along with celiac. And then I went gluten free while pregnant, so it was hard to evaluate any improvement because my body wasn't feeling normal anyway.

So now I'm in this spot where I am carefully gluten-free, but psychologically I kind of still don't think I have celiac disease because I didn't do a biopsy.

Do I do a gluten challenge and go through with a biopsy, or should I just get over my denial and accept that I absolutely do have celiac disease? Should I just go out and eat a doughnut one day to see what happens? That last question is only mostly a joke.

Sorry this is so long. Thanks for any insight you can offer. I really appreciatr the amazing resource that is this community.

[beth01]

You know the answer, read your post.  It's all there in black and white.  Your tTg IgA was 110 on gluten and then dropped to 8 after a gluten free diet. Not everyone needs a biopsy for a diagnosis.  I am not saying this to be b%$@#y, just reading between the lines of your own words. I am pretty sure you know you are a celiac.  Pregnancy only last nine months and it's been a year since your diagnosis.  You could have cheated before now, but you haven't.

 

My advise, and I will probably get yelled at for saying this, have the donut!  If it makes you sicker than a dog, you have another piece of evidence.  If it doesn't make you sick, see your doctor and ask for a endoscopy and biopsy - you have to do a gluten challenge for that anyway which is why I said eat the donut.

[hannely]

Thanks! You're right; it does seem pretty obvious with those kinds of numbers, doesn't it? I appreciate the straight talk .

I'm not trying to sound whiny about this or anything. I have really no desire to "cheat," and I don't think, after a year of gluten free, that I'm suffering by living this way. I just feel like I don't KNOW know, and it's kind of crazy-making. I don't even really know how I actually react to gluten because it's not something I paid attention to at all before going gluten free, so it's been tough over the last year to pinpoint if I've been glutened or if I was just feeling pregnant, for example.

I also recognize that you guys can't necessarily interpret test results for me. But my doctor seems uninformed, too, and I'm having trouble wading through the info to understand just how reliable the ttg-iga positive is as a diagnostic.

[beth01]

Some people on here are really good about the tests results.  Amazingly after being a Med Lab Tech for 16 years I know nothing about these tests.  I am a relatively new celiac also, so no help there. From what I understand, it's more likely to have a false negative than a false positive. 

 

My daughter was just diagnosed and her tTg IgA was >100. She hasn't had an endoscopy yet and I am not sure if she will.  She sees the Ped's GI on the 18th. It says Celiac on her chart.

 

I am assuming your doctor had to have other reasons to test you for celiac besides just a thyroid problem. Did you have any other health problems?  Otherwise, I want to go back 11 years and see your doctor lol.  That was when my thyroid problems started and I just got diagnosed two months ago after 30 years of health problems.

 

You said it seems your doctor is misinformed also?  Are you at least having your health monitored?  There is a whole work up you need every year to see how you are doing.  More intense than you would need if you weren't celiac.  Maybe you need to see someone that specializes in celiac if there is one in your area, or at least see a GI.

[hannely]

Really, it was just that my doctor thought it would be worth checking because of my thyroid. She's very thorough with things like that! However, in retrospect it might explain some things, like my chronically abysmal iron levels and (maybe?) recurring migraines.

So my doctor is good in that proactive way, but I don't know about the follow-up stuff. Like yearly work-ups. Do you know what extra stuff I should be looking into? I'm in Canada, and it's a bit tough here to get in to see specialists, but maybe I'll ask my doc for a referral...

How old is your daughter? What made you decide to look into celiac testing for her?

[beth01]

Yearly you should be tested for B12, Folate, Vitamin D, Iron, a Complete Blood Count, a Comprehensive Metabolic Panel ( which needs to include calcium and magnesium), and you should also have your thyroid checked every year.

 

I can tell you that a lot of people with celiac also get migraines.  I have had them my whole life except for the last two months, I was diagnosed two months ago and haven't had a true migraine since going gluten free.  I was getting 4 a week on bad weeks.

 

I had my children tested when I was diagnosed with celiac.  It's hereditary so family members should get tested.  She was positive and my son was not. You will want to get your children tested.  My doctor didn't want to test them even though my daughter was having unexplained fainting episodes but I pushed for it. Sure am glad I did.

 

I know Canada is different for health care but I know that there are people on here that are also from Canada and more knowledgeable than I am.  Hopefully one of them comments.  You definitely need follow up care for this disease though.

[RMJ]

Here's how I think about it. I was tested because of migraines. No GI issues. I didn't have a biopsy due to an unrelated medical reason. But my feeling is - I had a positive blood test that said my body was attacking itself (TTG IgA is an antibody against a normal protein). I was willing to go on a gluten free diet to keep my body from attacking itself. My antibody levels went way down, which tells me that the gluten free diet is working. And I have far fewer migraines!

[hannely]

Thanks for the info. I was so focused on pregnancy and the crazy newborn period that I honestly haven't done anything beyond "okay, now I'm living without gluten." Now that my baby is four months old and I've got a bit of mental space for something past the basics, it's time I got some stuff figured out! And I'm driving my husband nuts with the should I or shouldn't I waffling re: endoscopy.

I'm glad to hear your stories about migraines! Gives me hope.