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Where Do I Start?

djmom

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djmom Newbie
djmom
Posted

Hi-

I have a strong suspicion that my daughter(s) and I may have celiac disease. My mother has it.

One of my daughters and I were tested about 4 years ago and we were both negative. (antibody test)

She has a defect in the enamel of her permanent teeth which I know is very rare and often linked to celiac disease.

Here are my symptoms that "match" what I have read (I guess atypical in that I do not have the GI symptoms my mother has)

depression, extreme fatigue, frequent migraines, edema in legs, tingling in hands, gas, there may have been more that matched too, that is all I remember off the top of my head.

My question. Does it sound like I might have it? My mom thinks I do, but she thinks everyone does ;)

Do I go back and go thru the antibody testing or just bite the bullet and pay for genetic out of pocket? And if so, who would I test first?

If I test my daughter and she is positive, then I am positive, right? (pretty much sure since my mom is and my husband probably isn't). So then that is only having to pay out of pocket for one test.

But if she is negative, I have to test me.

If I test me first, if I am negative, do I need to test her?

Or is this one of these things where I will probably have at least some degree of a genetic possibility and I will need to test her anyways?

Which lab is the cheapest?

Or do I just go back to the primary care with my complaints and ask about celiac disease (again?) It is a new doctor now as my insurance has changed.

I do have two daughters so if this all starts coming out positive I guess she will need it too.

Any help in getting started would be appreciated. My mom is helpful, but I kind of want to deal with this on my own because I don't want her to know how crappy I feel.

Thanks so much in advance. Sorry this is so long, answers to all or part of the message are appreciated!

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happygirl Collaborator
happygirl
Posted

Go to your doctor, explain your concerns (i.e., the things you told us here), and ask for all to be tested using the Celiac panel.

AGA IgA

AGA IgG

EMA IgA

tTG IgA

total IgA

Your doctor can also order the genetic testing through their office as well.

Mtndog Collaborator
Mtndog
Posted

Uh...where to start. Well, if your mom has it then there is a 50/50 chance that you do. The genetic testing (I did mine through Prometheus) is about $400 but all that will tell you is if you have the genes.

You could go back and have the antibody tests again or ask for the biopsy (for you) or you could both go gluten-free, see how you respond and have the genetic test. I basically accepted I had it with a positive response to the diet and having one of the genes.

Since my doctor ordered it, my insurance covered the gene testing.

Either way, welcome to the board!

ShayFL Enthusiast
ShayFL
Posted

happygirl is right! Go to this new doctor. Might as well get as much as you can paid for through insurance. You pay your premiums so dont pay out of pocket unless you have to.

Just tell this new doctor your symptoms, your daughter's symptoms and your family history. Ask for complete Celiac panels for you and your two daughters. Also ask for genetic tests for everyone. All the doctor can say is no. You have nothing to lose by asking for EVERYTHING.

djmom Newbie
djmom
Posted
  • Author

Great idea to ask for everything. Isn't it funny how managed care has beaten me down so much that I pretty much give up before even trying!!!

Thanks so much. I hope I don't become a permanent member by necessity, but if so, seems like I have found the right place!

For genetic testing, is it just a standard test, or is there something specific I ask for also? (certain gene testing)

Again, thanks.

ShayFL Enthusiast
ShayFL
Posted

Just Celiac gene testing.

imagine22 Contributor
imagine22
Posted

I have celiac disease (no gastro symptoms either) so for testing my daughters (baby & 3yrs) I went with the saliva gene test first as its less invasive and then if they didnt have the genes I could not worry about testing ever again.

unfortunately they had the genes (but no surprise!) so now i will have them do a blood test each year to check, even if they are asymptomatic (as they have a higher than 1 in 10 chance of it developing at some point); but if they were sympomatic I would consider endoscopy even if bloods were negative.

You may be gluten sensitive or intollerant rather than actual celiac though. My mother is gluten sensitive but not celiac (bloating, reflux, depression, fatigue) but she wont give up the gluten permanently - just long enough to feel better then she gradually starts again and feels awful again!

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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