Testing Frustrations

[pookybean]

At her check up 2 weeks ago I asked my daughter's dr to do the lab for Celiac.  I explained my results and that I am still waiting for my apt to get the endoscopy done but would like to get testing started for the kids just in case.

 

Well I get the results back today (she is iron deficient, just like me) and they only tested for the TTG igA.  That's it.  Nothing else, not even the total serum.  She is 15, so I understand that it is probably not as  big a deal  as if she was very little....but still...why???

 

I call the doctors office and spoke to the dr that was in today who basically told me that since she is overweight for her age, she doesn't have celiac.  She also said a few other things that I felt were rude.  Bottom line is she said they won't order anything else because they have no reason to and that if I want to pursue it to take her to the GI.   She doesn't have any GI issues, if anything it will be the DH. 

 

I guess I am just wondering if or how to proceed.  Should I just let it go for now until I see what's going on with myself?  I am more concerned with my 7 y/o who has more of the symptoms than my older daughter but they won't talk to me about testing her until her check up in Feb, which does it matter if they are only going to do one test anyway? 

 

So frustrated with this whole thing.  How can there be so much information out there and the doctors seem to know nothing? 

 

Thanks for listening.

 

Megan

[Bttrfly62]

There are people on here much more knowledgeable than I, but I, too, am overweight and Celiac positive, and affected to the point that I have malabsorption of meds. I know weight loss is one of those "typical" symptoms- but it's not a universal symptom. Seems like a very ignorant response to me. 

[bartfull]

If you're thinking it is DH you should find a GOOD dermatologist who is experienced in the DH biopsy. It needs to be taken while she is still eating gluten, and it needs to be taken on CLEAR skin right NEXT TO and ACTIVE lesion. Maybe print out some of this info from a reputable website such as cureceliac.com and show it to the doctor. Same thing with your other daughter when she goes for her checkup. If the doctor pooh-poohs this info, find another doctor.