It Took One Week To Be Calm Enough To Write This

[Gemini]

This thread has been a hoot and I couldn't agree with you all more, regarding the medical professions ignorance and denial regarding Celiac Disease.

Recently, I had some bloodwork done and some of the results came back a bit wonky. I have had the same results before, over the years, and just figured it was attributed to having celiac disease. I even did some research on it and found documented research proving that these issues are related to auotimmune diseases. Sooooo, I was referred to a hematologist by my PCP because she is apparantly not up to snuff on this stuff and is doing the AMA thing of panicking and thinking I have some horrible blood disease. I am completely asymptomatic of anything and have made a wonderful recovery on the gluten-free diet.

I called the hemotologist and, unfortunately, they work out of the hospital and are oncology specialists to boot. I gave them a brief account of what the deal was and told them outright I wasn't worried about things because I have celiac disease and felt the low levels were directly a result of that. I also told them I have had these results before and if it were that serious, I would think I would be a goner by now. Do you know what their response was? They asked me to bring any and all test results from my celiac disease diagnosis with me so they could look at them. I got the distinct impression they did not believe me. What I wondered was.....do people with other diseases like diabetes get asked to bring proof of diagnosis with them? I have never heard of that before and was a little miffed to think I have to prove to them I really do have celiac disease. I am going, I guess, to shut my PCP up but don't have a good feeling about this. I think my blood pressure is going to go up that day!

[Judyin Philly]

The dr. at NIH told me they don't like to diagnose people with it because the diet is "too hard."

LOVED ALL THE POSTS BUT HAD TO COMMENT ON lAURA'S--

THE 3rd GI I had told me basicly the same thing................" Gosh, Judy why would you want to live such a hard life going gluten-free if you didn't have too

She saw all my tests results but after 2 1/2 years the endoscop and colonoscopy made that comment. She took a personal leave of absence so...............GI'less again.

better alone and info on here for sure.

judy

[jmd3]

Ok, I think I can write about it now without popping my cork.

Went to a medical meeting last week about constipation, and asked what I thought was a reasonable question about the incidence of celiac disease presenting as constipation in his practice. He asked if the audience believed the incidence in the population was as reported, and too many of them(mostly GI's in the room) said no.....it was more rare than 1 in 133! He's even a native Australian!!!! The speaker said "everyone now thinks they have a 'touch' of sprue" and that it has built up into cult status!! I felt like I needed to be physically restrained !! I carefully took note of the ones nodding their heads to Dr R. McCallum's opinions. He is at the University of Kansas, and is a dept chair for GI motility. I basically decided to "behave".....I can learn more about them and their attitiudes if I keep my cool. But I wanted my "cult" friends to know!!!!!!!!!!!

I get so frustrated when I hear this.... and it recently has happened to me

Given my terrible health history in the last few years...I want to have my children tested for celiac, my childrens pediatrican spent 15+ min telling me that "everyone thinks they have this, and are just jumping on the band wagon to be a part of it" I can't get the ped to examine my children for 15 minutes!! I made another appt with the joint Ped Dr in the office, and he won't test them either, he told me to take them to a GI doc... so I did, and he won't test them either.

Agh, it is a revolving door!

[woolwhippet]

If they had to sh**t 14 times a day those doctors wouldn't be so dissmissive. Sorry, I am bitter. Been told a few too many times that it's all in my head.

[Shotzy1313]

Everyone here seems to be on one side of the argument. Dont get me wrong, Id say I am also on this side but I am trying to see why he would say such a thing. Do you think its possible people go a little overboard? Since the symptoms are so broad it could almost look like people are blaming any negative feeling they have on celiac.

[pickles1]

Everyone here seems to be on one side of the argument. Dont get me wrong, Id say I am also on this side but I am trying to see why he would say such a thing. Do you think its possible people go a little overboard? Since the symptoms are so broad it could almost look like people are blaming any negative feeling they have on celiac.

I am so sorry for all you guys having this trouble! I'm in Perth, Australia, and was diagnosed 2 months ago. Happily, almost everyone (professionals and just friends/family/colleagues) has been very supportive. Only once has someone said something along the lines of making it up or blaming all random symptoms on Celiacs diesease, but since this was my housemate and I quickly pulled up a whole lot of info for him to read, he was an easy convert.

Seems every person I've told knows someone else who is a Celiac, so I guess that's why they accept it. I heard recently that they think 1 in 10 Australians has a gluten intolerance, but only 1 in 100 is being diagnosed. Is it similar figures for the US?

[hathor]

I heard recently that they think 1 in 10 Australians has a gluten intolerance, but only 1 in 100 is being diagnosed. Is it similar figures for the US?

Getting a good figure on gluten intolerance is difficult. I've seen numbers from 10 to 35%, but folks don't say what this is based on. The estimated occurrence is 1 in 100 for celiac (really, a subset of gluten intolerance). But if this figure is accurate, then 97% of celiac in the US is undiagnosed. A study showed that it takes, on average, 11 years to be diagnosed in this country.

So, it seems like the problem is worse in the US.

[mom with gf toddler]

Hey, awesome picture you have there! You should enter in a contest or get a big 8x10 of that one. Thanks for the idea!!!! This helps get my mind off FOOD!

[miles2go]

The next time a doctor implies celiac or gluten intolerance is a "cult" or "all in your head" perhaps someone could gently ask such a doctor how long it would take after holding his (most likely) hand on a hot burner before he knew he felt pain. Or how many times he would need to run his hand through a wood chipper before he decided it wasn't such a good idea. Or after his child was run over by a car how he would quantify the evidence of his broken heart?

I need a doctor near Portland, Me. who understands positive bloodwork and I haven't found one. "Hypocritic" oath is perfect. First, ignore harm?

The truth is out there. Hang in there everyone!

lisa

Hi Lisa,

If you don't mind driving a bit, I would recommend Dirk Vandersloot in Rockland. He's an M.D. who has become a homeopathic consultant and helped me a lot quite a few years back. You're making me want to go back and see him He's at The Center for Health & Healing, 17 Masonic St., Rockland, ME 04841, (207) 596-0991. I didn't see him for celiac at the time, because I didn't know that was my problem - it was all about the allergies and radial tunnel syndrome, if I recall correctly and if he couldn't help you out personally, would be an excellent resource. And as a plus, you can hit the Farnsworth Museum after your appointment.

Best of luck,

Margaret

[bulrush]

If they had to sh**t 14 times a day those doctors wouldn't be so dissmissive. Sorry, I am bitter. Been told a few too many times that it's all in my head.

I got to talking to an Internal Medicine dr about my gluten allergy and asked him what he thought the incidence of this was in our area. He said "oh, it's usually all in their head."

But over the years I have found out that most doctors are good for nothing more than treating bronchitis or a kid's broken arm. It took me 9 years of relying on doctors for their help. When I tried to diagnose myself it only took me 6 months to get a positive on the gluten allergy blood test in 1996.

And so, I rely heavily on groups like this to point me to journal articles relating to my condition and how to treat it. Thank you for your help, all!

[saaa-wheat<3]

Dang Kool-Aid...

It upsets me to hear that there is so much ignorance out there, but as one who is turning a corner in my gluten-free journey (i.e. not worrying about what the Kool-Aid doctor told me, and just listening to my body which says DON'T YOU DARE EAT GLUTEN!!!), somehow it is amost reassuring to know that I didn't get a referral to the only you-know-what out there. I cried like a little girl when he told me to "go have some pizza for lunch"!!!

One of these days, our place in the world will be known and respected.

I'm so sorry honey! the same thing happened to me when i went to the allergist to be tested and i just about bawled when the test results came back negative. He was really good to me though, and patted my arm and said "that doesn't rule out that you have a delayed response though" and drafted a letter to my primary in my presence that he suspected that although the immediate test came back negative he felt that due to my experience with diet that i was most likely gluten sensitive

Funny that someone else also mentioned acid reflux and celiac. I had to have an upper and lower GI and the GI discovered an ulcer in my esophagus and now i have to take meds daily for that because since i've had these symptoms of reflux 'ever since i remember even as a child'. at consult, i told him that i eat a gluten free diet, so while he was in there he decided to perform a couple of biopsies without telling me first that he would. when i woke up from the procedure, he said he did those biopsies and they didn't reveal anything. groggy from the anesthesia, i replied "duh, makes sense since i have been eating a gluten free diet for over 4 years now". and he gave me a funny smile but agreed. lol...I didn't get mad at having to pay out of pocket for the extra test (no insurance) because i was SO appreciative that he actually listened to me!!!

I also have to say that my primary is also one who seems open to my 'listening to what my body says' so, i guess i've been luckier than most. I've accepted the fact that i don't require a 'professional' diagnosis, however, the day that i get one in my hand, i am gonna wave it like a flag and run crazy saying "i told you so!!!" to everyone who was skeptical!

[miles2go]

I also have to say that my primary is also one who seems open to my 'listening to what my body says' so, i guess i've been luckier than most. I've accepted the fact that i don't require a 'professional' diagnosis, however, the day that i get one in my hand, i am gonna wave it like a flag and run crazy saying "i told you so!!!" to everyone who was skeptical!

[miles2go]

Everyone here seems to be on one side of the argument. Dont get me wrong, Id say I am also on this side but I am trying to see why he would say such a thing. Do you think its possible people go a little overboard? Since the symptoms are so broad it could almost look like people are blaming any negative feeling they have on celiac.

A big part of that is the relative lack of research in the field of so many patients presenting with such a variety of symptoms. That said, I'm one who comes down on the side of finding a good doctor to treat those ailments that aren't celiac-related, but even if you can't, be knowledgable enough about the condition so that you can maintain your own health regardless. Cancer indications? No problem... Celiac, huh, what is that?

Ya know?

[saaa-wheat<3]

WE do, but apparently THEY do not.

love your avatar M2G!

[miles2go]

WE do, but apparently THEY do not.

love your avatar M2G!

Hey, thanks!

Should probably change it once in a while.

[Nuala]

This attitude of the medical community about celiac "touch of sprue" is very similar to how the medical community views thyroid disease. Maybe some of you, like me, have thyroid disease too, and know from first hand experience how hard it is to get a diagnosis, and what reaction you received from medical professionals when you told them that you might have a thyroid problem..."yes, these days everyone thinks they have a thyroid problem" (patronizing smile or laugh).

The problem with both celiac and thyroid diseases is that the symptoms are so diffuse that drs are very unwilling to attribute them to a real physical problem rather than some somatic complaint ("its all in your head", "you are depressed", you need to reduce your stress", etc). Also, many are under edcuated about these diseases and are looking for classical signs - which are in actuality the most severe forms of celiac and thyroid diseases, when the literature (if gps and other drs would read it!!!) says otherwise - that the classical forms of these diseases are rarely seen nowadays, but nevertheless the diseases can be present.

I always wondered after I had a bad appointment with a dr, who was arrogant, patronising and made me feel like I was crazy, what these same drs would do if these were sick like I am/was? Somehow I imagine they would do anything and everything to find relief ...just as we all have.

As far as I am concerned, the proof is in the improvement of the quality of life.

[Offthegrid]

I second the idea in the last post ...

For me, the problem was my symptoms were SO diverse. And to this day I'm convinced I receive the Dx only because I mentioned to a new doctor that my aunt is gluten intolerant and I wondered if I had it, too. When I go back to my primary for my annual checkup, I plan to do a good deal of education to him. (: (He's very, very, very nice, just obviously did not know a lot about the neurological symptoms gluten can cause.)

In diabetes, it takes one blood test and you get the answer. Here, you could have a blood test, endoscopy and have it all come back OK and STILL not be able to tolerate gluten. So in their minds, it may not be real the way other medical conditions are real.

[JNBunnie1]

Everyone here seems to be on one side of the argument. Dont get me wrong, Id say I am also on this side but I am trying to see why he would say such a thing. Do you think its possible people go a little overboard? Since the symptoms are so broad it could almost look like people are blaming any negative feeling they have on celiac.

Yes, but think about WHY a doctor wouldn't want o diagnose Celiac disease. There's no drug to treat, there's no office visits required to manage, for the most part. A Celiac diagnosis means money out of THEIR pockets, and of course they wouldn't like that. See, my doctor said, oh, you feel better? Good, I hope I never see you again! But my doctor's a pretty rare breed, he actually cares about my health!

[rinne]

Thanks for your rant, clearly your feelings are shared.

I got to talking to an Internal Medicine dr about my gluten allergy and asked him what he thought the incidence of this was in our area. He said "oh, it's usually all in their head."

But over the years I have found out that most doctors are good for nothing more than treating bronchitis or a kid's broken arm. It took me 9 years of relying on doctors for their help. When I tried to diagnose myself it only took me 6 months to get a positive on the gluten allergy blood test in 1996.

And so, I rely heavily on groups like this to point me to journal articles relating to my condition and how to treat it. Thank you for your help, all!

I'm with you.

Also, I think we are part of a revolution. We are turning away from the "authorities" that are sponsored by drug companies and finding out for ourselves just what is making us sick.

The day I started trusting myself was the day I started to get better.

I am grateful though to a doctor who raised the issue of celiac with me and because of that I found out that my sister had been diagnosed with celiac. She was told by her doctor to "avoid" wheat, no mention of gluten. My brother was also diagnosed with celiac. My endoscopy was scheduled for five months after I quit eating gluten and I didn't go through with it as I saw no point.

Last winter was very difficult, so painful that I decided that if it got much worse that I would go winter camping and freeze to death, that is how strongly I feel about doctors and hospitals.

To quote Leonard Cohen, "I will decide for myself what is rotten and what is fresh." From where I am, what passes for "healthcare" stinks.

[hathor]

Yes, but think about WHY a doctor wouldn't want o diagnose Celiac disease. There's no drug to treat, there's no office visits required to manage, for the most part. A Celiac diagnosis means money out of THEIR pockets, and of course they wouldn't like that. See, my doctor said, oh, you feel better? Good, I hope I never see you again! But my doctor's a pretty rare breed, he actually cares about my health!

Lucky for you!

I think part of the problem may be that doctors don't get complete continuing education. Do they have time to keep up with every article in every journal? In this country at least, they have the drug company reps visiting them, sponsoring the new research, showing up at medical conferences, etc. Something like celiac or anything related to diet -- little money to do research.

In the limited time they have to read, I imagine they gravitate to articles that will give them treatments that are lucrative or otherwise sexy. Telling someone not to eat gluten and that's it?

I often wonder about why the awareness level of gluten problems is so low in this country compared with the rest of the developed world. I have to think our health care system and the incentives involved must have something to do with it.

I recently listened to a podcast made from a radio interview with the researcher who found that mammograms, at least for a particular age group, are useless. He couldn't get published in the US. He had to go to the Lancet (the premier medical journal in Britain), which published him immediately. He said he had radiologists coming up to him at conferences after that, sneering, "Why are you trying to take money out of our pockets?"

I compare Britain, where studies were done and the standard of care developed that impacted wisdom teeth that are causing no symptoms are best left in place, to the US, where dentists assume that the teeth have to come out. (OK, I'm bringing a continuing argument I'm having with our dentist about my daughter's teeth. I think we were first told that the teeth should come out "soon" about 6 years ago and the topic never gets dropped. My daughter continues to be fine.)

I'm also reminded of Dr. McDougall's experience at a California hospital, where he had 12 day diet programs for those with weight or other health problems. The cardiologists, when they or their loved ones had problems, came to him. But those same doctors wouldn't refer patients to him. It would be money out of their pockets.

And all those heart surgeries that undergird the profitability of many hospitals, most of which lack any studies demonstrating that they increase longevity.

It is so nice we have each other for information, and the occasional doctor who is different, tries to stay up with the literature, and actually cares.

OK, now I've had my second rant of the day on the board. Perhaps I need to go do something constructive with my day

[Deputy1079]

I am not going to try to defend the doctors here that have been extremely dismissive with your diagnoses/treatments, however, I want to share a story. My GI (who I think is fabulous! - I'm very lucky) told me that I would have to go on the gluten free diet. I was diagnosed after I was having weird food cravings (ice, chalk, etc.) and knew that meant nutritional deficiencies. I went to donate blood to get a 'free hemoglobin' check. My hemoglobin was so low that I was nearly to the point of needing a blood transfusion. I went to the doctor who referred me to hematologist who referred me to GI. They thought I had GI bleeding and found I had celiac disease after endoscopy and bloodwork. I continue to go to the cancer center every other month for IV therapy - medicine to kick-start my bone-marrow to keep my blood counts up and attempt to maintain a gluten free diet. My GI told me the following:"you are 32 years old and I doubt you will stick to the diet. It is a hard diet to keep up with but all I ask is that you are honest with me. If you tell me you are gluten free when you are not and I do all this testing on you then the results are going to appear inaccurate and we will have this big 'chasing our tail' issue." I truly appreciated his honesty. I see him once a year and I tell him that I cheat all the time. He encourages me but is a realist! I have little will power and because I have very little symptoms it's hard for me to not cheat every now and then! I occasionally have a brownie or sandwich or something and I feel some bloating and whatnot. it's strange that I never felt bad until I felt good. Now I sometimes recognize the symptoms but they are slight. I am fortunate to not have the discomfort but I know physiologically - the process going on inside my body is not good. So, I guess what i'm saying is that although my doctor told me he didn't think i would stick to the diet he said it with the intention of maintaining an open relationship and not putting me in the position of being 'bad' if I do tell him that I am eating gluten every now and again. I think the honesty is better than having guilt and better than lying and having tests unnecessary. He wont even test me anymore - he said if I stay gluten free for 6 months let him know and he will test me to see if my antibodies have come down but otherwise it's useless. He doesn't even require me to have an appointment - he says call me anytime and I will see you. He really is a great doctor and I am grateful that I have him after hearing so many horror stories. Good luck to all of you with your gluten free diets. I know it's hard and I really do try!!

[debmidge]

In 1994 my husband's GI was so dismissive it was downright medical negligence.

However, I have been noticing that some GI's as of late are getting with the "program" on celiac disease more than before and that's a good sign.

[ravenwoodglass]

I am not going to try to defend the doctors here that have been extremely dismissive with your diagnoses/treatments, however, I want to share a story. My GI (who I think is fabulous! - I'm very lucky) told me that I would have to go on the gluten free diet. I was diagnosed after I was having weird food cravings (ice, chalk, etc.) and knew that meant nutritional deficiencies. I went to donate blood to get a 'free hemoglobin' check. My hemoglobin was so low that I was nearly to the point of needing a blood transfusion. I went to the doctor who referred me to hematologist who referred me to GI. They thought I had GI bleeding and found I had celiac disease after endoscopy and bloodwork. I continue to go to the cancer center every other month for IV therapy - medicine to kick-start my bone-marrow to keep my blood counts up and attempt to maintain a gluten free diet. My GI told me the following:"you are 32 years old and I doubt you will stick to the diet. It is a hard diet to keep up with but all I ask is that you are honest with me. If you tell me you are gluten free when you are not and I do all this testing on you then the results are going to appear inaccurate and we will have this big 'chasing our tail' issue." I truly appreciated his honesty. I see him once a year and I tell him that I cheat all the time. He encourages me but is a realist! I have little will power and because I have very little symptoms it's hard for me to not cheat every now and then! I occasionally have a brownie or sandwich or something and I feel some bloating and whatnot. it's strange that I never felt bad until I felt good. Now I sometimes recognize the symptoms but they are slight. I am fortunate to not have the discomfort but I know physiologically - the process going on inside my body is not good. So, I guess what i'm saying is that although my doctor told me he didn't think i would stick to the diet he said it with the intention of maintaining an open relationship and not putting me in the position of being 'bad' if I do tell him that I am eating gluten every now and again. I think the honesty is better than having guilt and better than lying and having tests unnecessary. He wont even test me anymore - he said if I stay gluten free for 6 months let him know and he will test me to see if my antibodies have come down but otherwise it's useless. He doesn't even require me to have an appointment - he says call me anytime and I will see you. He really is a great doctor and I am grateful that I have him after hearing so many horror stories. Good luck to all of you with your gluten free diets. I know it's hard and I really do try!!

I do so hope that your doctor has stressed to you the diseases that not being totally gluten free lead up to. With your being so anemic you really need to be strict with the diet. I know it is hard but your life may depend on it. Please revisit the idea that the diet is too hard, it may be hard to get used but your life depends on it. Ignored celiac and the bodies reaction to the toxin can lead to cancers, lymphoma and GI, it has been linked to Alzhemiers and dementia, mental health issues and the list goes on.

[Fiddle-Faddle]

Deputy, I am worried that you took your doctor's request for honesty as a license to cheat.

I, too, have practically no symptoms--but I don't cheat. EVER.

I know too many people with fibromyalgia, crippling rheumatoid arthritis, lupus, MS, and a friend who recently died of lymphoma. All these are at the very least exacerbated if not downright CAUSED by continued gluten ingestion on top of celiac.

If you could remain gluten-free, REALLY gluten-free (no cheating, no CC), for one month, your urge to cheat will greatly diminish. If you could stay off gluten for several months, it'll go away entirely. Bread won't even look appealing.

What is keeping you cheating is--the cheating. It's like a drug--every time you cheat, you are setting off your immune system all over again, and then you crave it. It's poison.

Wouldn't it be nice if you had the self-control and the self-respect to prove your doctor wrong?

[JNBunnie1]

I have something to add, Deputy. I'm not sure which side of the family my Celiac came from. Regardless, my father died this past April from a virulent form of leukemia. I'm not sure it's possible to describe how awful it is to lose your Daddy when you're only 22 (he died two days before my birthday, I'm 23 now) and he's only 54. There are lots of books and stories and writing by people who have lost people to cancer. The uncertainty and fear you live with every day they're dying. I'm sure they alll describe it better than I can. All I can tell you is that someday, you don't want your children to miss you because it wasn't worth it to eat the right food. Every time I get even a little tiny bitty urge to eat something I can't have, I play a little movie in my head. I picture myself dying in my 50's, and my young children and grandchildren asking me why it wasn't worth it to me to stay alive for them. Why I couldn't be bothered to give something up so that I could be around longer for them. Maybe it hits me that way because of my relatively recent loss, and I'm sure that sounds kind of harsh. That's just how I feel about it.