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Diagnosis

gayle

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gayle Newbie
gayle
Posted

I am pretty sure that I have celiac disease, gluten intolerance, or something like that. Unfortunately I have an HMO, which normally I never use, but the testing is expensive and I thought maybe I could convince them to cover for having it done at Enterolab. I went to my assigned doctor to see about getting a referral to have the fecal test done. He made a referral to a gastroenterologist. I am wondering if this is going to be worth the time and trouble or if I should just go ahead and pay for the test myself. I am afraid that their gastroenterologists will not know what they need to know about celiac disease and give me the run around. I don't eat much wheat now because I know it causes me trouble, but I'm not rigid so I'm sure I'm getting exposure I don't know about. It may be at least worth seeing what they have to say if there is a possibility that they will cover for the tests. Or is it more likely that they would refuse to use Enterolab and make me do some testing that won't prove anything since I don't eat much gluten. I live in Southern California, in San bernardino county. Does anyone know a good doctor in that area? If I have to I'll go outside my Hmo, but as I understand that is not necessary as you don't need a doctor's referral if you go to Enterolab. I would appreciate any thoughts on this.

Gayle

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JerryK Community Regular
JerryK
Posted
I am pretty sure that I have celiac disease, gluten intolerance, or something like that. Unfortunately I have an HMO, which normally I never use, but the testing is expensive and I thought maybe I could convince them to cover for having it done at Enterolab.

Hi, how do you get a diagnoses, good question? I belong to Kaiser. In about 2001, I went to them complaining of lethargy and depression. Before I knew it, I'd been prescribed an anti-depressant.

I had severe reactions to the anti-depressant, they gave me tranquilizers (Klonopin). Klonopin made me even more depressed....eventually, I caught on and flushed it all down the toliet. Ended up in the hospital after not sleeping for days(never cold turkey three meds at once).

Fast forward to 2006, I start having gastrointestinal symptoms, consistent with gluten intolerance.

My emotional reaction to gluten is identical to the symptoms that got me prescribed an AD in the first place. Doesn't take a rocket scientist to figure out what likely happened 5 years ago....

Not only do I no longer trust my HMO to do the right thing for me...I paid directly to Enterolab for

testing, which I'm going to take to Kaiser and request blood testing. Now I know that Kaiser can't do anything for Celiac, but I believe they need to know that this type of misdiagnosis happens all the time. It happens because they are too quick to prescribe a pill.....and don't do any of the detective work they should be doing....

If it can happen to me there must be HUNDREDS OF THOUSANDS of undiagnosed gluten intolerant folks out there. I don't know if I'm truely Celiac, but I'm absolutely Gluten Intolerant. If you have it, a few weeks gluten-free and then reintroducing gluten will enlighten you....My mood goes from lovely to suicidal, in about 3 hours.

From what I've read and heard, the biggest problem in the US is that doctors aren't looking for it.

I suspect I have a whole family tree of undiagnosed Celiac's or Gluten Intolerant's.....

What a healthcare system we have in the US. You pay thru the nose for insurance that is basically worthless...unless of course you have stock in a major pharmaceutical company.

I've also got a gene test on order from Enterolab....

CMCM Rising Star
CMCM
Posted

It became pretty obvious to me that going the typical doctor route, HMO or not, was going to be a long, expen$ive road moving from clueless doctor to clueless doctor, and all sorts of expensive tests. You could be traveling along that road too as you try (mostly likely unsuccessfully) to get reimbursed for non-standard testing at places like Enterolab.

My suggestion: Read, read, read. Start with the book "Dangerous Grains" on amazon, and when you look that up you'll see lots of other good books too. For about $50 you can get several really good ones that will educate you about this condition and believe me, all sorts of light bulbs will go on in your head as everything starts to make sense.

THEN....you'll probably want to do what I did, since I realized I was having a LOT of symptoms that could absolutely be related to gluten. I spent $369 for the full panel offered by Enterolab, which included a gene test, a test for antibodies (showing if autoimmune activity is occurring), a test for malabsorption, and a test for casein sensitivity. This test will really tell you what you need to know, and then the next step is to go on a seriously gluten free diet for at least a month and see if your symptoms go away.

I am very negative about the traditional doctor route because then just DON'T KNOW about this, and when you read all the stories about what they tell people, the horrible and unnecessary meds they give people, even the unnecessary surgeries (removal of gall bladder, for example) that are done in an effort to solve the problem. Doctors are NOT trained or oriented to look to nutrition as a solution for anything. This is why it takes on average 11 YEARS to get a celiac diagnosis.

Another unfortunate thing is that while doctors tend to look for CELIAC disease, the most extreme subset of the overall gluten sensitivity syndrome, they are MISSING what gluten sensitivity can do to people and how sick it can make them...often equally sick as with celiac disease. Gluten sensitivity can also lead to organ and tissue damage, as well as certain cancers. It needs to be taken seriously, but is not considered in the general medical community.

Be a pro-active person on your own behalf, and for the price of a few books and a $369 panel of testing which you can do without the involvement of any doctor, you will have the answers you need.

Is it really that simple? In most cases, emphatically YES.

Guest lorlyn
Guest lorlyn
Posted

I guess my daughter and I got lucky. I took her to a GI doctor for tummy problems and 5 days later he called us and told us she probable had celiac and scheduled a biopsy. After the test at the hospital he said everything looked fine but would have to wait for the biopsy results to come back from the lab. When the results came back he said the hair in her intestine had just started to turn red and he said it was the start of celiac. So it only took us a couple of weeks to find out. Our doctor is the one who knew about celiac. I thing the one thing that helped us was he was young. We are lucky because we live by UAB in Birmingham and it is one of the best research hospital in the world.

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