Frustrated With Doctors Around Here

[Smunkeemom]

When my youngest got diagnosed, she almost died before they found out what was wrong with her, she at a year old had fallen to below her birth weight, she was on a feeding tube, and Celiac was "the last thing" they thought she might have. I know now (2 years later) that she was a classic case of celiac, I read medical journals and she was exactly what they say.

I have been watching a little boy occasionally, and he is always sick, at a year old he has been dx'd with IBS, Eczema, and Reflux. Looking at him I could see that he was in pain, so I talked to his parents about Celiac, and they had to push for the doctor to test him, and I found out yesterday that he indeed does have Celiac.

I asked them how things were going on the diet and they said "what diet?".....after I got over my shock, I started asking them questions, and found out the doctor hadn't ever mentioned the word gluten to them, he just said "keep him away from wheat for a while"

That's basically the response I got, if I hadn't taken it upon myself to find this site and really spend hours researching I know my daughter wouldn't have ever recovered. Why are the doctors here like this?

Even though my oldest and I had pos. blood tests, they told us we didn't have Celiac (and I was dumb enough to believe them for a while) until I questioned it and found out that since we didn't have chronic D and weren't losing a lot of weight they had "decided' the diet was too much work for nothing.

We are all gluten free now, we are all slowly getting better (except for the youngest who is at 100% and feeling great now)

I feel like the crazy Celiac woman a lot of the time, esp. when I see kids like this and it's the first thing that comes to mind, I think "am I trying to make it fit?" and "am I gluten paranoid?" I guess I was right this time, but I feel like a b*tch trying to educate people, I get so annoyed when they don't get it, which most of the time really doesn't matter, get it or don't you can't feed us gluten, but with doctors it's different, they are doing our community a disservice by being so apathetic.

I am thinking of really getting into the scene of showing up at the ped's GI offices with brochures and info for the doctors, I wonder what they will do with me.......the crazy Celiac lady LOL

sorry for the rant.

If anyone has any advice I sure want to hear it

[wolfie]

I don't have much advice, but I can certainly identify with you. I had to practically beg our Ped to test DS and he wouldn't test DD b/c she didn't have any symptoms at all. DS came back with a highly positive ttg (222 when it should be under 20) and I am VERY glad that I forced the issue.

I can't believe that little boy's dr didn't mention a diet change w/o gluten when he diagnosed Celiac!!!! I feel like the crazy Celiac lady as well......my sis and Dad are burying their heads in the sand and DH is right behind them. DH does try to be supportive, but I think he is in denial over DS being +. I go out of my way to educate people as much as I can. The more people that know, the better.

I think going to the drs office with brochures is a great idea!!!

[Guest nini]

Educating Dr.s is a great idea in theory, but in reality, an extremely difficult task if they are not willing to learn. We have had a Dr. from one of the Pediatric GI offices join our local support group just so he could learn from us... I do wish more Dr.s were like him. He is in the same office as the idiot Dr. who refused to consider Celiac in my daughter. When I told him my experience, I didn't name Dr.s, and he actually recommended I take my daughter to the very same idiot that missed it in her! I told him no thanks, I'm not putting her through any more testing, I KNOW what is wrong with her and what to do to fix it. He told me that unfortunately in med school they are taught that this is very rare and they will probably NEVER see it in their practice. Boy are they taught wrong. So they aren't even looking for it, it's not on their radar. They believe it is rare, they believe they will never ever see a case of it, and therefore refuse to even consider it.

If we start to bombard these Dr.s offices en masse with brochures and other information, they can't continue to ignore us, can they?

[tarnalberry]

I think that - since most doctors will never have to be on the diet - it is up to us to educate them, whenever the opportunity arises, that the diet really isn't that big of a deal.

For instance, most people think that quantum physics is hard. It's not really (it's not that it's easy, but basic quantum isn't hard either), but everyone makes jokes about how hard it is, and how only a few people could ever understand it. So everyone thinks that it's this super hard subject and they don't try to learn it and whenever they hear something about it, always think they won't understand, and don't try to encourage other people to learn it because it's so hard.

Doctors think the diet is super hard. Maybe because it was years ago, when all they thought you could have was rice and meat and bananas. And so, what's left in textbooks these days, is "lifelong adherense to a very strict, very restrictive diet that most patients will never follow." They're so busy working on the other 99% of patients, that they don't even think about the changes in foods available to us and how you can eat healthy, happy, and varietally while being gluten free. If we - those who are on the diet - can convince them that it's not really that big of a deal in practice, once you get over that steep learning curve, then I think we'll have fewer doctors making this mistake.

[penguin]

I agree with Tiffany. My doctor told me after I'd been gluten-free for a few months, "well, the gluten-free diet is so hard to follow in America." I said, well, yeah, but not really. One would think that dr's would do anything they could to get their patients to stop eating processed and fast food crap! The gluten-free diet is excellent in that regard!

I try and put the dr in my shoes. Like, "so, why did you go into gastroenterology? Did you have constant D for years and horrific stomach pain as a child?" Empathy is something all doctors need, and very few have.

I'm sure qantum physics isn't as hard as it sounds, but it does require a lot of math. I skipped physics all together in favor of more advanced biology. It's like Greek. It looks like a hard language because it has a different alphabet, but other than having four different ways to say the sound "ee", it's not bad. There are actually a whole lot of cognates.

[2Boys4Me]

I feel like the crazy Celiac woman a lot of the time, esp. when I see kids like this and it's the first thing that comes to mind, I think "am I trying to make it fit?" and "am I gluten paranoid?" I guess I was right this time, but I feel like a b*tch trying to educate people, I get so annoyed when they don't get it, which most of the time really doesn't matter, get it or don't you can't feed us gluten, but with doctors it's different, they are doing our community a disservice by being so apathetic.

No advice, but I hear you. On Ty's U8 soccer (under 8 years old) there is an eight year old boy who is barely an inch taller than Ty, and maybe 3lbs heavier. He's playing on U8 because they thought he'd get slaughtered on the U10 teams because he's so small. The mom is tiny (5'1") and the dad is about 5'10", both the boys are waaaay undersized for their ages. I thought the 13 year old was 9. Anyway, the mom said that he's been tested for everything. I said that I didn't want to be one of those mom's who was "my kid has it so yours must, too" but that maybe she should get him tested for celiac or at least check out a gluten-free or gluten-free/CF diet on the internet, see if anything seemed to fit. I don't think she ever followed it up, but I put a bug in her ear anyway.

On the bright side, any time anyone at work hears anything about gluten-free or celiac, I get approached about it, so I'm doing my part slowly but surely.

[Jennas-auntie]

I think bombarding offices with brochures is a great idea. I've actually considered this with our local doctor's office, since one thing I found (used to clean for a clinic) was that people will read almost ANYTHING left in the break room. Now, the docs themselves might not eat there, since they often eat at their offices, but I've thought about bringing in some brochures with some gluten-free foods I know are good and giving it to "Dr. X and staff" which means they'll probably put it in the break room, and tell the docs about it so they too come in and eat it. It's true, one frustrating thing is seeing people you think might have it, have them mention it to their doctor, and have the doctor say "yeah...but the diet is so hard" as if that means they shouldn't bother testing for it. I mean, chemotherapy is hard too, but they recommend that. Doctors recommend lots of things that aren't simple. At least around here they don't seem to say "that's so rare" but still have a major problem with "that's so hard". Maybe the next time the doc here I know of who said to one teen who went in after finally convincing her to get checked out for celiac "you know what you can't eat? pizza, bread, cake, cookies.." (and didn't test her) will choke on his own words as he recalls that, actually, last week he ate a gluten-free bagel or cookie. If you do get the nurses educated too, then they can help promote it to the docs. Plus in a break room, often the secretaries eat there, the janitors, the nurses, the pharmacists, the social worker. In the US at least, one of the major barriers to celiac testing appears to be health provider resistance, rather than actual fact.

I recall how everyone in the medical community was absolutely convinced that ulcers were caused by stress, acid, and spicy foods, and should be treated with antiacid drugs. Barry Marshall who was an Australian researcher, thought they were caused by bacteria. He was made fun of, since all of medical science "knew" that was ridiculous. He teamed up with J. Warren and together they did research and found evidence for it, but still no one believed them. Finally he swallowed a vial of the stuff at a conference, I believe, and lo and behold he comes down with an ulcer. They treated it with antibiotics and he recovered. They won the 2005 Nobel Prize in Physiology/Medicine.

[Smunkeemom]

I just got back from Vacation Bible School, and one of my helpers has Celiac, and the other doesn't. The one without Celiac starts asking me questions about it, like "will they go into shock if they get some?" and "what happened that you knew they were sick?" and so I take it as an oppertunity to educate, since she is going to school to be a teacher, and the helper of mine with Celiac says "it's more of a nuisence than anything, they won't die, it's not too serious, it just gives you a stomache ache"

I couldn't decide whether to smack her upside the head, or laugh at the amount of misinformation she had, then I got really worried about her.....I asked "when did you get your diagnosis?" and she said "about a year ago"

I asked who told her it was "just annoying" and "not too serious" and she said "my doctor"

apparently it's ALL the doctors around here

I am going to print up brochures this weekend and start my crusade tomorrow, maybe my friend who's hubby works at the news station can get me on air if for no other reason than to wake up some people who believe the crap their doctors told them.

[Ursa Major]

Well, I am so mad with doctors today after seeing my idiot dermatologist, that I almost wished I wouldn't have read this thread until I simmered down a little! It is absolutely unbelievable, that a doctor will diagnose a child with celiac disease and fail to tell his parents about the only cure there is. I say, shoot him!

Seriously, it's about time some of us started a real crusade of educating those dumb doctors, since the medical schools are doing such a poor job of it. Of course, medical schools are pretty much run by the pharmaceutical companies these days, and since celiac disease won't make them any money, since diet is the only cure, they don't LIKE to teach it! If they can't sell drugs to cover up symptoms (cures aren't what they want, how would they make their billions of dollars a year if everybody got cured?), they aren't interested.

Most of what they teach in medical schools these days is how to diagnose problems, and which drugs to use to treat the symptoms. Let's not find and treat the cause, we like people to be on drugs indefinitely!

So, the doctors aren't really to blame, they're purposely misinformed in med school.

Smunkeemom, the radio station idea sounds great.

[eKatherine]

I don't think we can lay the blame solely on the medical schools, even if they are responsible for overreliance on drugs. The fact is that doctors are human, they are typical Americans, and Americans believe that life isn't worth living without a steady consumption of processed junk food containing wheat.

He's made the judgment that a celiac is better off deathly ill than without pizza, bread, cookies, crackers, sandwiches...

Nobody would fail to test a suspected diabetic, or after diagnosing them, tell them the diet is too hard to follow, would they? Why then with wheat?

[Jennas-auntie]

Yeah, it's pretty crazy...but I agree with Tiffany in that I think things will get better as we educate them. After all, they eventually came around to H. pylori causing ulcers instead of stress. Also it would help if there was a bit more credit given to the patient, as in, "This might not be the easiest thing, but you can do it" vs. "nobody can stay on this diet so why try?" (are they living in the bananas/rice-treatment-only era for dietary treatment also? Do the gluten-free food companies need to start marketing to doctors like the drug companies do?) Anyhow, I do hope for the future, at least there's been progress, though sometimes it seems it can't happen fast enough.