30 replies to this topic

[SarahJimMarcy]

Recently, I got my genetic testing back for celiac. It was positive. I wasn't surprised, and since I don't know my family history, it was nice to have that piece of the puzzle in place.

I had gone gluten free last April with my daughter, and after 2 days, I started to feel better.

But, in 14 years, I went to see probably 8 to 10 different doctors - MDs, NDs, nutritionists. In all cases, they told me I was sick because I had had my gall bladder out. One of the doctors even had a record of me being there 6 years earlier asking the same question. Back then, they wanted to do a colonoscopy. I didn't take them up on this offer!

Shouldn't doctors, specifically GI doctors, know about celiac? No one in all that time mentioned it. And to prove I had it, they wanted me back on gluten for two months. Another offer I turned down.

What frustrates me is that a.) I feel better off gluten and b.) I have the gene for celiac and c.) my daughter has celiac -- but the doctors won't say it's celiac because I won't do the endoscopy. Arg!

[ravenwoodglass]

It is frustrating, to put it mildly, when we have been sick for so long and no doctor even thinks to test us or opens their mouth and tells us that many times the tests have false negative rates. Even when we go gluten free and the hordes of health issues resolve they still want to poison us for months to give us the 'official' diagnosis that is obvious in our return to health.
I don't know why doctors are not more up to speed on how many celiacs are out there. I don't know why doctors still think of celiac as a GI disorder either since it can impact so many body systems. I wish they would wake up and realize that their patients are not stupid, nor do we want to be sick, celiac is not just nerves, and yes we are capable and willing to go through all the trouble of keeping ourselves safe. We don't want pills to control symptoms we want to be well.
I feel I have gotten the best revenge possible. I rarely need doctors anymore and certainly am not keeping the immodium and pharmacutical companies in business any longer.

[GlutenDude]

Laziness. That's what I attribute it mostly to. I was unbelievably lucky to have a GI that diagnosed me immediately. It helped that I kept a food journal for a few weeks beforehand (pasta, bagels, pasta, bagels, LOL). But the more I go see doctors, the more I'm convinced the majority of them (not all) are too dang lazy to put the effort in to get an accurate diagnoses.

Point in case: I've had a sore throat for about five weeks. Normally, not a big deal, but with my celiac and other medical issues, I went to see our family doctor. What does she do? Sends me to get an CAT scan. Really? For a sore throat? Needless to say, it showed nothing, but can't wait to get my bill for that one. Two weeks later, my sore throat is gone. Ugh.

I'm with you Raven. The less time and money spent on doctors and drugs, the better.

Gluten Dude

[NateJ]

I've had better luck with teaching Dr.s or hospitals. They students are a lot more likely to pay closer attention to your history and symptoms. At least in my experience. I saw numerous Dr.s over 10+ years, so many symptoms and issues. It wasn't until I went to a Uni Dr. that they finally diagnosed me. They actually used the slides from a previous biopsy and made the diagnosis. One that another Dr. or lab had said was negative.

[saintmaybe]

The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue is!

[Robert16]

To me it's easy Just follow the MONEY the only way to feel better is to quit eating the food's that botter you there is know medicine to fix it so then they can't make any money from you having to keep coming back to see them, Also the drug company pay for all or most of there schooling after they become doctor's and when i was seesing my GI doc you sit in his waiting room and everybody that came out of his office came out with a free sample pack of nexiuam.

[melikamaui]

The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue is!

I love the way you phrased that! "How the doctors make their gold." I was shocked when a pediatric gastroenterologist wouldn't diagnosis my son after positive blood tests and a positive genetic test. He said the diet was "too hard" to do for the rest of his life and he would "only diagnosis with a positive endoscopy even though he was totally positive that my son had celiac disease." When I didn't show up for our next appointment he called to ask why and I told him that I found a doctor who didn't feel it was medically necessary to do an additional (and invasive) test when we already knew my son was celiac!

[SarahJimMarcy]

I've met with an MD/ND here in the Twin Cities, MN, area who I wish I would have seen sooner. He thinks everyone has celiac, to some degree, and he called our local GI doctor franchise "a colonoscopy factory". I appreciate his irreverence! He also recommends the paleo diet. I'm starting to investigate...

[Austin Guy]

There is also a vacuum regarding knowledge of celiac and other food intolerances in the psychiatric field. I was treated for ADD, depression and anxiety and nobody ever asked a question that could have suggested gluten. They are unbelievably uninformed.

[Chad Sines]

The vast symptoms make it hard to diagnose without the biopsy. I get why they want it, but no way I want to regluten just for the test. Still, why bother having them put it in writing? it just goes on your insurance and if you lose it and need new insurance, it might cause issues. Since there is no surgery or meds for it, my decision was not to bother with it. I do not even mention it to a doctor unless i have to.

[beebs]

Some of us are from countries where we have medicare/NHS and they still won't diag without a biopsy. Actually here you need a biopsy no matter what. The paed GI was saying today that it takes so long for anything to change in the medical community - partly because noone ever agrees about anything. I wonder how long it'll be before we start seeing the new biopsy testing where you don't have to do the challenge- a decade probably

[mushroom]

Yes, this is definitely one disease where the patients are country miles ahead of the medical professionals when it comes to diagnosis. It is really a pity that some folks absolutely have to have the dignosis because we know that we have to be gluten free. It is only those who are going to be impacted by the educational systems that really need the piece of paper to get them special dispensation from "the authorities", or those who can't do it without someone telling them to, that need the official imprimatur.

But there are still diseases out there that no-one knows anything about. I was asked by a physical therapist this summer, has anyone ever told you that you have ____x____ and I said :unsure:No??? Turns out i do and it explains so much that I never even knew how to ask about and it just blows my mind. Blasts celiac into a cocked hat Maybe there is just too much to know to be a doctor????

[bonnie blue]

I agree most folks in the medical community are pretty clueless. It took me almost a year to find a good gastro. He actually told me that I know more about Celiac then medical students, scary huh. We have to be advocates for our own health, and keep looking for doctors who will take proper care of us. Take care.

[srall]

I've met with an MD/ND here in the Twin Cities, MN, area who I wish I would have seen sooner. He thinks everyone has celiac, to some degree, and he called our local GI doctor franchise "a colonoscopy factory". I appreciate his irreverence! He also recommends the paleo diet. I'm starting to investigate...

Can you tell me who this doctor is? My doctors (mine and daughter's pedi) have been very supportive, but still misinformed...I'm the one with all the information. If you don't want to post his name, can you send me a message. TIA.

[ravenwoodglass]

Maybe there is just too much to know to be a doctor????

There is a lot to that statement. I think one of the problems is that celiac can be so multisystemic. Many doctors when stumped will send us off to this specialist and that specialist and each on only looks at symptoms related to their specialty. They never get together and realize that all the different syptoms they are looking at all are related to the same disease.