Looking For A Good Gi Doctor In San Diego

[katbird]

I have tested negatively for Celiac twice, although the blood tests were sketchy. 3 out of four of my kids tetsted positive in the last year. I have been having symptoms for the last 3 years. I was sent to a GI and he did an endoscopy , looking at my throat and stomach primarily because at that time I was had been complaining of throat issues. I had asked him to check me for celiac and he insured he would. When I got the report back, it said that they had biopsied only my throat, but it said I was negative for celiac based upon "looking". I have been back to my GP countless times, the last time having a CT scan for stomach difficulties. Of course, that was negative for anything, so now my GP thinks it is all in my head. I still feel like crud most of the time, low energy, stomach issues, memory problems, etc. And this all started before my kids were diagnosed. The only reason we found out about my kids was my then 7 year old was diagnosed with type 1 Diabetes and they checked her for celiac. She had a very severe case. My other two were less severe.

I have been doing lots of research and have come to the conclusion that not a lot of doctors know what they are talking about when it comes to celiac. So I am at a standstill. Should I go back to my GP and demand that they do another blood test, this time at a reliable lab? Do I get a second opinion?

Should I have that Gi doctor look at the "biopsy again? My kids' GI doctor is a celiac specialist and is wonderful. Of course, she can't really tell me anything about my dilemma, but she did say there is a adult celiac specialist in SD.

Anyway, I was just wondering if there is anyone out there who can give me some advice.

[mslee]

Hi!

Your in my home town! I was recently dxed but in Texas so I am unsure about a good GI in San Diego but here is some info I have passed on to my family out there maybe some will be of help....

UCSD Has a Celiac research center:

Open Original Shared Link

San Diego has it's very own gluten free website:

Open Original Shared Link

This is another link for UCSD..Not sure if it is the same center

(this is the Dr listed at the bottom of the page... Dr. Greg Harmon at the Adult Celiac Center, call (619) 543-2347)

Open Original Shared Link

If you contact any of these groups they should be able to send you a list of Drs who know about celiac:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Wish I had a good name to give you, maybe someone in SD will get you a name. Another option is to have entrolab Open Original Shared Link or prometheus labs Open Original Shared Link do a genetic test...prometheus looks like it can only be ordered by a Dr. but they have forms you can print out for your Dr to fill out &they are in CA. Entrolab you can order yourself.

Also if you get D.H. blisters I have heard they can be biopsied & tested for celiac.

Hope that helps!

Good luck!

[mslee]

also if your kids have tested positive, and you have symptoms there is a very good chance you are celiac too...you could just go Gluten Free.

..sounds like you have had you stomach looked over pretty good, they could do colonoscopy to make sure there is not colitis or anything caused by celiac...have they checked your liver, thyroid, ana, or for malnutrition to see if anything else is coming up suspicious? My liver & thyroid being off helped to lead to my dx, after dx they tested my vitamin levels & I was low in B12 & D. Some are low in Iron.

good luck!!!

[katbird]

Thanks for all your info! I have thought about going gluten free without the diagnosis, but I find it hard to do when I don't know for sure if I have it. Plus I keep thinking that if I test again, I need to be on a gluten diet.

I have had my liver and thyroid and iron checked out and apparently they were all fine. I haven't had vitamin levels done.

I am aware of most of the info you gave me regarding the caliac center inSD and Dr. Harmon. San Diego does have good resources for celiac. I guess I should ask my doctor to request a Prometheus test. If they do it, and it comes back negative, then at least I know a reliable lab did it. And perhahs I can have them test for the gene as well. I think that is where I will start. Your journey looks like it was a pretty rough one. I am glad you are feeling better now! My kids feel a lot better now and are growing much more!

Thanks again!