Feeling Discouraged In Asia

[BelleVie]

Hi everyone. I'm feeling so bummed after today. I've been gluten free for 9 months, and in those 9 months saw several ailments that I've lived with my whole life heal, including migraines, chronic yeast infections, chronic fatigue, severe acne, and constipation/diarrhea (among many other symptoms and ailments.) I'm only 25, so dealing with all of these things certainly hasn't made for an ideal "twentysomething" period.

 

It should have occurred to me to do celiac testing before removing gluten from my diet, but it didn't, and I wasn't really in a position to have testing done anyway. In another post that I made, I mentioned that it only occurred to me that I might be positive for celiac several months after I stopped eating gluten and saw such remarkable improvements in my health. 

 

Recently I decided that I should do testing, mostly to figure out if I'm at risk for other diseases/complications (should I be positive for celiac) as well as for leverage to encourage my family to get tested. I e-mailed a clinic for foreigners and was told that they did offer a CBP for 150.00.

 

 Having been on a gluten free diet for nine months, I was prepared to have some sort of consultation with the doctor and to then begin a gluten challenge, and to plan to return for testing at the end of the determined time frame. 

 

I was very disappointed to find out today that they stopped doing the CBP at most labs in the country that I live in TWO WEEKS AGO due to the rarity of celiac in Asia and the cost of the lab work involved. If I want to do the blood test now, it will cost me upwards of 1,000.00. 

 

I'm just so bummed out. I was so ready to begin a challenge, to get through it, and to move forward with my health and my life. I know that the longer I am gluten free, the healthier I am. But it is also true that the longer I am gluten free, the further away I am from a clear diagnosis. 

 

It's time to move forward, I guess. Maybe I'll pursue testing when I move back to the U.S. But I'm still so upset to not have any clear answers. I guess I'm just so frustrated with the difficulty in nailing this thing down. I wish there were a simple, definitive test. Blood work and BOOM...diagnosis. No gluten required.

 

Thank you for listening to my little rant.  

[kareng]

I have seen that they are working on some tests that wouldn't require the eating of gluten. I can't put my finger on any links right now. One where they do an endoscopy and take samples and somehow expose them to gluten in a Petri dish? Not real clear on it right now. Maybe in few years that will be available. .

I usually like people to get tested, but it sounds like being gluten-free and calling yourself gluten intolerant is the right thing for your circumstances.

[BelleVie]

Oh, that's great news. I certainly hope that it's available someday! Thank you so much for the quick reply.  

 

[kareng]

Oh, that's great news. I certainly hope that it's available someday! Thank you so much for the quick reply.

I'm going to the big Celiac conference in Sept in Chicago. I hope to hear more about these things and then I can be more helpful.

[cyclinglady]

I'm newly diagnosed with celiac disease, but my husband has been gluten-free for 12 years.  Docs told him to try giving up wheat/gluten to help with sinus congestion, body aches, etc. The first year was a learning curve (bouts of cheating), but he realized that he felt so much better without gluten.  He's been adhering to the gluten-free diet since that first year only getting ill when he's been glutened outside of the home.  He has not been officially diagnosed and refuses to do the challenge because 1) he doesn't want to be sick for months, and 2) he already knows he needs to stay off gluten.  I was only diagnosed during a routine colonoscopy and the doc noticed that I was habitually anemic and had hashi's.  Was I shocked!  Bummed too, since I already have many food allergies.  But, feeling much better now!