Gastro?

[Solandra]

Ugh. So, I emailed my GP last week asking about my old test results and if I should get retested and get my son tested. Someone at the office wrote me back saying that because I didn't have intestinal symptoms, I didn't need to bother being gluten free. I did have eye tics, aches, anxiety and tingling in my legs sometimes that's stopped since going gluten free, so I think my symptoms might be neurological? They also said I could get a referral to a Gastroenterologist if I had more questions. This GP was the one that told me I should be gluten free based on my slightly positive AGA test a couple of years ago, and my Endo told me not to bother. Now I'm just like... what the hell! I don't really want to start eating gluten again to see a Gastro and get biopsied, but I wonder if I should.

[cyclinglady]

Ugh! I can not believe it!

You do not have to have intestinal symptoms to have celiac disease!!!!! I had pretty severe anemia that was attributed to Thalassemia (a genetic anemia), hypo thyroid (true.....) and my last year of perimenopause ( 30 day periods). But I also had celiac disease which was discover by my GI when I went in for a routine colonoscopy.

You should get the copies of your lab and present them to your son's doctor. He should be tested. If you share the same lame GP, time to shop for another.

Please go to the University of Chicago's celiac website to download testing and symptom information and share with your GP if you think he is willing to learn. You have to advocate for your own health!

You could go to the GI and try to get a firm dx. I would personally hate to do a gluten challenge for an endoscopy, but it might help your son in the long run.

Good luck!

[Solandra]

We have the same doctor. He's always been pretty good, I don't know if it was him who wrote me back or someone else at the office, though, because he's always told me to be gluten free. Maybe I should make an appointment and get my son the blood test and go from there, he's still eating gluten.

[cyclinglady]

I would. My daughter tested negative, but with both parents having gluten issues and an entire family diagnosed with tons of autoimmune diseases, chances are she is doomed and she knows it. At least she will not have to suffer needlessly for years. My dx has helped others in my extended family too.

[Solandra]

I emailed him back and reminded him that he told me a "weak positive was still a positive" a couple of years ago and that I'd like to see what else I can do. I'll probably see if I can find a doctor who knows more, and a GI as well.

[BlessedMommy]

If your symptoms are neurological, be careful about gluten challenging. I can attest that gluten challenging and neuro symptoms can be brutal!

[Solandra]

Yeah I'm worried about that! Not really sure I want to even mess with it, maybe I'll just continue operating under the assumption that I need to be gluten free.

[BlessedMommy]

Sounds like a good plan! (admittedly I'm a little biased, though, because of my very negative experience with gluten challenging myself. My daughter's gluten challenge went fine, but she ultimately tested negative, so that's probably why)

 

 Isn't Hashi's helped by a gluten free diet as well?

[Solandra]

I've read that, some say Paleo, even. But my Endocrinologist didn't say anything about it. She said also if I didn't have tummy problems to keep eating gluten. SIGH.