Greater Los Angeles Area - Need Competent Physician

[nanoatzin]

Looking for a competent gastrointerologist so I can avoid being hospitalized again. Have been to over a dozen physicians in Ventura county, Los Angeles county, and Orange county. All of the gastrointerologists in southern California insist that genetic testing and blood tests are junk science and are useless to diagnose disease. I have brought medical records to gastroenterologists that show elevated immune globuline for gluten and physicians that insist no celiac (DGA, EGA, tissue teansgluramate, ...). An immunologist and a toxicologist told me blood tests show celiac disease and gastrointerologists say this is a lie after being hospitalized when they told me it would be safe to eat wedding cake. There appear to be no competent gastrointerologists within hundreds of square miles, but all the other kinds of doctors appear to be competent.

[Skylark]

If you're willing to drive a bit you might like Warren Celiac Center at UCSD. I'm a little confused by your post, though. If you have positive celiac tests and get sick to the point of being hospitalized eating gluten, what's the issue? You do not need a doctor's help to stick to a gluten-free diet.

You cannot be tested for celiac without eating gluten for about three months, and genetic testing only stratifies risk. There are healthy folks with the so-called celiac genes, and celiacs with no so-called celiac genes at all.

[mamaupupup]

Dr. Gregory Harmon at UCLA 310-825-1597 (he was at UCSD and opened a Celiac Center at UCLA recently).

Good luck!

[nanoatzin]

The issue is that a toxicologist at UC Irvine said "you might have celiac" after running a broad series immune globuline panel for hundreds of things after I got poisoned at work. Shell fish, dairy, nuts and many other things also showed up. Kind of like telling me "you might be a redneck" after hearing an okie accent. Not her specialty.

Multiple gastrointerologists in ventura refused to do blood tests and told me I had to do an endoscope test, then said I didn't have celiac. Unfortunately, it's not like walking into a doctor and saying saying "I need to know if I'm pregnant" and figuring out what the problem is 9 months later no mater what anyone has to say. My upper GI is not involved, which is probably because I've been on a gluten free diet for 7 years. I know some kind of food substance is making me sick and all the doctors know how to do is prescribe "goof ball pills" when I get sick. I need the name of ONE competent gastrointerologist that will cooperate with a blood panel and gene tests. All of the symptoms say celiac but the biopsy says no. I know I get sick with wheat, barley, rye, and oats so I already avoid them.

My right leg has been paralyzed for a month. I'm getting addicted to strong pain killers that I don't want this week. I've got skin ulcers that go away with steroids and antibiotics. Blood tests say no infection.

If it's celiac, then I'm so sensitive that I'm going off on vapors. I haven't had a crumb of anything with gliadin for years. I'm beginning to think I go off when my wife toasts bread.

The doctors I've gone to so far don't seem to care about anything but the money and what will happen to their medical licenses if the keep giving me narcotics for the pain.

Thanks for the info. I appreciate that. Ow! This really hurts.

I hope this finds everyone well.

[mamaupupup]

Thinking of you. I'm a newbie--and I think it IS possible to get sick from having any gluten in the house/being around toasted bread. There is a section in the forums for people who are highly sensitive. Perhaps folks in that forum could give you additional support and insight!?! Wishing you better health!

[Skylark]

Your doctors are correct to refuse serum testing and only offer endoscopy. You cannot be tested for celiac disease on a gluten-free diet. After seven years the antibodies would be long gone and most people have normal biopsies. An abnormal biopsy after seven years off gluten means you're either being exposed to gluten or have refractory celiac. You could consider getting the panel yourself at Open Original Shared Link but I think you would be wasting your money. It's hard enough to get a positive celiac test while you're eating gluten.

If you had the negative biopsy while you were still eating gluten you may be non-celiac gluten intolerant. It can cause very celiac-like symptoms. There is no diagnostic test for it other than trying the diet and nothing in particular a GI can do.

As far as sensitivity, you may need a gluten-free home. Not everyone can tolerate having wheat around the kitchen.