How Come It Took So Long To Diagnose Me?

[SillyYakMom]

yes, we should keep emailing her. I have emailed her and same thing, no reply.

I already e-mailed Oprah about doing a show about celiac disease. I told her I wouldn't be a candidate to be on her show as I'm still in testing and have only been sick a year. But I said she could find MANY people that took well over ten years to get diagnosed and we need to get the word out about this disease so more people will not have to suffer needlessly. Her producers/assistants (or whoever reads her show ideas section didn't respond and it's been over a week. I'm wondering if we should all start e-mailing them once a week. I'm telling you that would be the best publicity we could ever dream of getting.

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[CMCM]

I don't expect every doctor to know everything. However, what I DO expect is for a doctor to have learned to be a diagnostician, and furthermore, to actually have an interest in solving a patient's problem. If a doctor doesn't know how to diagnose something, if a patient comes in thinking he/she might have celiac disease and the doctor doesn't know about celiac disease, he should at least know where to research this and either learn about it at that point OR point the patient to another doctor who does know.

My mom (now 84) came down with full blown celiac disease at around 44 or so and nearly died from it while doctors kept telling her it was all in her head. One doctor told her, "Well, I'll just have to call it Dorothy's disease." It took a good 8 years and her normal 120 lbs. was down to about 85 lbs. before she finally saw a doctor who DID know about celiac disease and who tested her for it.

I'm wondering if it's even worth going to a doctor for his. If you think you may have it, I guess the proof is in the gluten-free diet: if you feel better on it, that tells you something. That's the only "cure" anyway, right?

Given the lack of knowledge of most doctors about celiac disease, you could waste thousands of $$ doing tests,and then in the end, the solution is to eat gluten-free.

[CeliacMe]

My overall disregard for the medical profession, is due to the fact that the vast majority do not seem to care about solving their patient's health problems and they are very quick to "diagnose" people like us as hypochondriacs far before exploring another diagnosis. I cannot count the times that I have had unexplained illness, all of which symptoms of celiac disease and the doctor started their "diagnosis" with the phrase "i guess..." or "it looks like..." or "it might be..." or "i think its..." You are right, the gluten-free diet is the solution, I suspect it will be for more people other than just those who are "like us". Its funny, throughout these message boards many people have just gone on the gluten-free diet and when they tell their doctors, the doctors become upset that they did so without the supervision of a physician. Why is this? Because the vast majority of doctors reccomend that patients follow that horrible "food pyramid".

Why are people obesssed with eating wheat? Something needs to be done about this food pyramid. For example, liquor and smoking are legal, but people know its bad for them and choose to put those substances into their bodies. People know that McDonald's isn't good for you, but they don't know how bad. People think one of the most terrible toxins around today, gluten, is good for them. These people have it coming out of their ears and the more they eat, the more seeds and grains in their bread, the healthier they think they will be. Not to get political, but how come marijuana is illegal, but things like McDonald's and bread are not? In my view, marijuana is no more harmful than McDonalds and bread. Re McDonalds: Has anyone seen supersize me? Re bread: please read any of the boards.

So who makes this food pyramid? The FDA? Does that wheat farmers association have people who lobby to bribe officials in our government in order to have their products as the "most important"? Should we get lobbiests for our cause? The gluten is bad cause?

I refuse to think that I am just "weird" for having celiac disease, in fact, I hate the term celiac disease. Celiac Disease- a disease, like MS, cancer, or aids. An autoimmune disease that cannot be cured, only treated with a "special" diet. Every particle of gluten that enters my body causes me to die, piece by piece until I get some other terminal health problem as a result which will only kill me sooner.

I don't like the sound of that, in fact there is a big part of me that does not want to think that it is at all true. Instead, I prefer to think that gluten is bad for everyone and my immune system is advanced enough to recognise the exact substance that is destroying my body. Therefore, I have a reaction to gluten and choose not to eat it because the reactions are not pleasant. and I am one of the enlightened, who know how truly terrible gluten is.

I don't expect every doctor to know everything.  However, what I DO expect is for a doctor to have learned to be a diagnostician, and furthermore, to actually have an interest in solving a patient's problem.  If a doctor doesn't know how to diagnose something, if a patient comes in thinking he/she might have celiac disease and the doctor doesn't know about celiac disease, he should at least know where to research this and either learn about it at that point OR point the patient to another doctor who does know. 

My mom (now 84) came down with full blown celiac disease at around 44 or so and nearly died from it while doctors kept telling her it was all in her head.  One doctor told her, "Well, I'll just have to call it Dorothy's disease."  It took a good 8 years and her normal 120 lbs. was down to about 85 lbs. before she finally saw a doctor who DID know about celiac disease and who tested her for it. 

I'm wondering if it's even worth going to a doctor for his.  If you think you may have it, I guess the proof is in the gluten-free diet:  if you feel better on it, that tells you something.  That's the only "cure" anyway, right?

Given the lack of knowledge of most doctors about celiac disease, you could waste thousands of $$ doing tests,and then in the end, the solution is to eat gluten-free.

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[Guest nini]

I don't like the sound of that, in fact there is a big part of me that does not want to think that it is at all true.  Instead, I prefer to think that gluten is bad for everyone and my immune system is advanced enough to recognise the exact substance that is destroying my body.  Therefore, I have a reaction to gluten and choose not to eat it because the reactions are not pleasant.  and I am one of the enlightened, who know how truly terrible gluten is.

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I completely agree with this statement. Gluten isn't healthy for anyone. There is a Wheat Farmers Association and they are in cahoots with the FDA, not kidding.

[Guest nini]

Open Original Shared Link

[debbiewil]

So who makes this food pyramid?  The FDA? 

Actually, the food pyramid was designed by the USDA. Yep, that's right. The US Department of AGRICULTURE is the one who came up with the pyramid. And what do you think the USDA supports and gets support from? Farmers, maybe? When the pyramid was originally designed about 30 years ago, it was promoted by the USDA to encourage people to eat more farm products. It had NO medical or scientific basis. Funny how doctors forget that.

Debbie

[chad from fla]

I was talking to my psychiatrist yesterday -- I see her for depression and ADD -- and I mentioned that I had recently discovered that I most likely suffer from celiac...and that would explain the ADD, depression, leg pain, digestive problems, skin problems etc.

It was funny, she looked at her notes, saw that indeed I had mentioned suffering from diarreah, leg pain skin problems etc. in addition to the mental problems I see her for and she went "Whoa! Whoever put all of those symptoms together and figured that out that you had Celiac must be one sharp doctor! Who diagnosed you? An allergist?"

I replied that I had figured this out all by myself from my own research and that I hadn't gotten an official diagnosis yet.

Anyway, she wasn't very surprised that I had to "diagnose myself". Apparently, celiac is a really tricky disease to detect.

[pokerprincess]

Actually, the food pyramid was designed by the USDA. Yep, that's right. The US Department of AGRICULTURE is the one who came up with the pyramid. And what do you think the USDA supports and gets support from? Farmers, maybe? When the pyramid was originally designed about 30 years ago, it was promoted by the USDA to encourage people to eat more farm products. It had NO medical or scientific basis. Funny how doctors forget that.

Debbie

and what is the cheapest and easiest thing to grow

besides beans? Wheat. Promote more, sell more,

grow more. I know this because ironically I grew

up running thru wheat feilds!

p.p.

[CeliaCruz]

I'm probably in the minority here, but I think wheat is a good thing...if you're lucky enough to be able to eat it. Sure, the USDA probably has inflated it's importance, but it's been around forever and there are even plenty of cultures that survive on nothing but bread. It's in the Bible. (Not that the Bible is the last word on everything, but still...)

For millenia, people have thrived on wheat and sayings like "the staff of life" and "Man cannot live on bread alone" seem to indicate that wheat has always been a trusted food...long before the USDA existed. Back when I could eat wheat, I just thought it was so good. The smell of freshly baked bread is AMAZING. The texture, the taste? Delicious. Gluten free bread doesn't compare. The way I see it? This disease sucks. I should be able to eat wheat just like everyone else and that's the tragedy. Maybe someday modern science will find a cure for this affliction and I'll be able to eat Pepperidge Farm cookies.

I wonder if Celiac is the recent result of the modern processing methods that most wheat goes through these days.

[Rikki Tikki]

I ahve to agree with you Celia, there is nothing like the smell of fresh baked bread. I believe that more people are diagnosed now because of the processed food. Celiac itself I believe was first diagnosed in the 1800.'s, correct me if I am wrong.

Anyway, it pretty much sucks but there are many worse things we could have. This time of year is the hardest for me, so many people bring baked goodies to work.

[Guest Viola]

Actually ... one book I read said that they first discovered what Celiac disease was in Holland after the war when all the important grains went to feed the soldiers (mostly German) at the time and the poor people of Holland was stuck eating what they could find, including tulip bulbs. Then they discovered that all the people that had been very sick with a disease they couldn't figure out suddenly got better.

Now they might have recognized this disease before, but didn't find a treatment for it until then.

I agree. I don't think there is anything wrong with grains if you have the digestive system that handles it. I don't believe it's up to us to tell perfectly healthy people that they shouldn't eat wheat, anymore than they should be telling us that a little won't hurt us.

[Rachel--24]

I'm probably in the minority here, but I think wheat is a good thing...if you're lucky enough to be able to eat it. Sure, the USDA probably has inflated it's importance, but it's been around forever and there are even plenty of cultures that survive on nothing but bread. It's in the Bible. (Not that the Bible is the last word on everything, but still...)

Actually in the whole "scheme" of things....grains havent really been in our diet for all that long. If you read Dangerous Grains it explains all this. After humans introduced grains into their diet their brain size diminished, their bones were smaller and they became shorter and less robust. I really dont think that wheat is healthy at all...even if you can eat it and not feel sick.

[Guest Viola]

I realize that a good many people live by the 'Dangerous Grains' book ... And that's fine, and healthy "for us". However. If you were totally healthy and never had any problems while you were on the old gluten diet ... would you honestly take everything in this book as gosple without questioning whether or not 'all' scientists and doctors agreed with it and why not? As with every thing, there are two sides to almost every story and each and every book, video, movie etc. is basically the authors research and opinion. And until it's been proven in a widely accepted way, it should "in my opinion" be questioned.

Every life style doesn't suit "every body". If that were true, we should all be back picking nuts off the trees and eating fish. And let me tell you ... I know some people that both nuts and sea food would kill.

I'm really not trying to knock "Dangerous Grains" It has many good points for people who are ill and "have" digestive problems. But there is a huge percentage of the human population that doesn't, and I'm just saying that we don't have the right to preach our diet to anyone who is not having a problem, or to knock anyone who wishes they could be back on the old diet. A gluten free diet might be healthy "for us" but it isn't easy.

[Rachel--24]

I realize that a good many people live by the 'Dangerous Grains' book ... And that's fine, and healthy "for us". However. If you were totally healthy and never had any problems while you were on the old gluten diet ... would you honestly take everything in this book as gosple without questioning whether or not 'all' scientists and doctors agreed with it and why not? As with every thing, there are two sides to almost every story and each and every book, video, movie etc. is basically the authors research and opinion. And until it's been proven in a widely accepted way, it should "in my opinion" be questioned.

Every life style doesn't suit "every body". If that were true, we should all be back picking nuts off the trees and eating fish. And let me tell you ... I know some people that both nuts and sea food would kill.

I'm really not trying to knock "Dangerous Grains" It has many good points for people who are ill and "have" digestive problems. But there is a huge percentage of the human population that doesn't, and I'm just saying that we don't have the right to preach our diet to anyone who is not having a problem, or to knock anyone who wishes they could be back on the old diet. A gluten free diet might be healthy "for us" but it isn't easy.

Yeah...if I was healthy I would still be eating wheat and I still wouldnt even know that pasta was made from wheat because I had no reason to care before. I dont think I've *ever* told a healthy person not to eat wheat. I dont preach to anyone and I really could care less what other people eat. I was simply stating that wheat wasnt in our diets forever and I personally think its unhealthy. I'm entitled to that opinion. Everyday I notice "healthy" people having digestive problems after eating wheat. I'm not one to believe anything I read unless I *see* evidence to back it up. I dont feel the need to tell anyone what they should or shouldnt eat but I do notice things that I never would have noticed previously. What I see around me reaffirms what I read in the book and I am tending to believe much of it. I dont discuss peoples food intake other than here on this forum....where it is applicable. Where you got the idea I was *preaching* my diet I have no idea.

[Guest Viola]

Sorry Rachel ... I didn't mean to affend. You just see so many posts on here that say "Grains aren't good for anybody" But whole grains are still on both the Canadian and U.S. Food guides, they are still recomended by diaticians and doctors, and still poven by many scientists to keep "the body moving" properly. I see most of my friends and a good many relatives that have no digestive problems and are eating a healthy diet of whole grains.

I really wasn't pointing out your post so much as many of the posts I have been reading lately ... some of the oat posts etc.

My appologies if you took it personally

[CeliaCruz]

I certainly don't feel that anyone has been preaching anything to me, but I do feel that the whole "wheat is bad for everyone" argument smacks of sour grapes. Literally, the fox can't reach the grapevine so he assumes that the grapes that evade him are probably sour anyway. And I sympathize: this disease is very isolating and it's very tempting to start thinking that, instead of suffering from a rare and unfortunate disease, we are actually part of a vanguard. I'm not sick, I'm special!

I haven't read "Dangerous Grains" so I can't refute any of its arguments, but I would like to point out that for every single food category -- nuts, meat, corn, soy, lettuce, you name it -- someone somewhere has published a book that claims it's unhealthy, unecological and needs to be removed from our diets. (And in these books there's always some featured villain handy promoting this food like "the US government" or "the Catholic church") I'm not saying that this proves that "Dangerous Grains" is a piece of quackery. I'm just saying...

[Rusla]

I don't find this diet particularily hard, except in the sense that I have to read every level and ask every question but that is nothing. I also don't believe now days that there is a lot of things that are good for us to eat. I haven't ate red meat for over twenty years because of my allergy to what is in it, I only buy organic, free range, no antibiotics, wheat/gluten free chicken from the farms that are certified. I may pay more but it tastes like chicken and turkey. I also don't get the fake seafood if I have seafood.

I believe that if a person suffers no ill effects or it endangers their health then go for it and if they don't care then that is their perrogative. Who is to say what is good for another, most certainly not I. I will do what is right by me and they can do what is right by them. This is the same idea I stick to for practically everything except if it involves child porn or bestiality. I feel know one has the right to tell another adult what they should and shouldn't eat as long it does not hurt someone else.

Unfortunately I suffer from numerous allergies and many have to do with scents, unfortunately my job does not ban those and many refuse to not wear them at work. Therefore many of us suffer here from that and we get sick. That is a case where someone has the right to say,"wearing perfume is not allowed because it endangers others health." The answer to the question that is likely going to be asked is, I rarely go out anywhere for that reason. I try to go to the mall when the least amount of people are there because of that.

[Rachel--24]

Sorry Rachel ... I didn't mean to affend. You just see so many posts on here that say "Grains aren't good for anybody" But whole grains are still on both the Canadian and U.S. Food guides, they are still recomended by diaticians and doctors, and still poven by many scientists to keep "the body moving" properly. I see most of my friends and a good many relatives that have no digestive problems and are eating a healthy diet of whole grains.

I really wasn't pointing out your post so much as many of the posts I have been reading lately ... some of the oat posts etc.

My appologies if you took it personally

I guess I felt a little "attacked" by your post.

I'm over it now.

[CeliacMe]

Celia:

I am VERY VERY DISTURBED by your notion that "wheat is a good thing." Firstly, the wheat that was in existence during biblical times is not the same strains of wheat that we eat and grow today. Secondly, lets forget what the bible says, let's use a little thing that I like to call logic. If you believe what the bible says, please do not take it literally (ie word by word). Don't forget it was translated several times over hundreds of years. It was also written in pieces over a period of decades by more than one person. It was written by people in a foreign language. As many of us may know, things in different languages don't always translate into another language seamlessly leaving room for error. Not to mention the fact that over this long, long course of time it was written and changed by man. So the term "wheat" does not mean the same thing that is in your beloved wonder bread.

Did you know that the first "modern" strain of wheat was introduced less than 100 years prior to the pinnacle of the PLAGUE outbreak? Don't you find it kind of odd that they never have a difinitive answer as to the cause of plague? Did you know what while slavetraders were bringing people from Africa to the Americas that they estimated about 40% would die of "dysentary"? AKA DIARRHEA. Gluten grains are not a part of the African diet, they eat gluten free grains such as sorghum.

Again, I don't want to get religous which I suppose translates into a political subject today, BUT hear me out. If you look into the theory of evolution - we evolved from other homo sapiens- homo erectus, homo habilis, etc. in Africa. Where coincidentally, there is no modern wheat. People in Africa do not eat wheat, unless of course we generous Americans send it to them along with cows milk, all of which I am sure they cannot digest. Back to the subject- we, humans, then migrated across continents over hundreds of years to the indus valley civilation (where iraq now is). And we migrated throughout the middle east. As we started farming and domesticating thigns, we (humans) brought various grains with us as we migrated so that we would have food. Being the creative and engineering people that we are, we decided to cross breed those grains. Some of the grains we cross bread had protein complexes similar to gluten. We cross breed them.

We get gluten around the "midevil" times in europe. Where people have terrible bouts with diseases such as TB and "PLAGUE". Which, by the way, went on for centuries and a fraction of that still goes on today, with little or no explanation.

I think that the overwhelming health crisis that happened during these times was greatly contributed and possibly caused by the human lack of immunity for this unnatural gluten protein. Lowered immunity creates opportunity for so called "opportunistic" infections, that most people with a normal immune system can normally fight on their own. I believe that PLAGUE and TB are such infections. As you can observe today since TB is practically extinct and are considered to be a "3rd world" illness. Another coincidence: most "poor" or "3rd world" countries recieve aid from other countries that comes many times in the form of grain (wheat) and milk.

Then again gluten must have been good, it had a good texture and was sticky so it made yummy and attractive looking pastries. So, according to your logic, or lack there of, it must have been a good thing.

Sure, wheat might taste good, but that which tastes good is not necessarily good for you. There is a big difference. Fried Chicken nuggets, bread crumbs, beer, etc. are all "yummy." Does that make any of those things "good" for you? ABSOLUTELY NOT!

Please if you have trouble digesting what I have said, look at yourself as proof. If you think I am making it up, please read dangrous grains.

I'm probably in the minority here, but I think wheat is a good thing...if you're lucky enough to be able to eat it. Sure, the USDA probably has inflated it's importance, but it's been around forever and there are even plenty of cultures that survive on nothing but bread. It's in the Bible. (Not that the Bible is the last word on everything, but still...)

For millenia, people have thrived on wheat and sayings like "the staff of life" and "Man cannot live on bread alone" seem to indicate that wheat has always been a trusted food...long before the USDA existed. Back when I could eat wheat, I just thought it was so good. The smell of freshly baked bread is AMAZING. The texture, the taste? Delicious. Gluten free bread doesn't compare. The way I see it? This disease sucks. I should be able to eat wheat just like everyone else and that's the tragedy. Maybe someday modern science will find a cure for this affliction and I'll be able to eat Pepperidge Farm cookies.

I wonder if Celiac is the recent result of the modern processing methods that most wheat goes through these days.

[debmidge]

My husband is celiac, I am not; after reading Dangerous Grains I felt like I didn't think eating wheat was good for me. I don't avoid wheat entirely, but I do eat it less than ever now. I believe the authors of this book point out why wheat isn't good for anyone, not only celiacs. They back up their viewpoint with data. A few years ago if someone told me that they didn't eat wheat/oat/barley or rye for health reasons I would have thought they were nuts, neurotic and hypocondriacs: how can wheat be bad for you? But I have learned so much about food intolerances (which I never thought really existed) and Dangerous Grains just added another dimension to that knowledge.

[CeliaCruz]

Firstly, the wheat that was in existence during biblical times is not the same strains of wheat that we eat and grow today. Secondly, lets forget what the bible says, let's use a little thing that I like to call logic.

Okay, then. Let's use logic: There are millions of perfectly healthy people on this earth that eat this new "dangerous" strain of wheat on a regular basis and aren't getting sick.

I wish I were one of them, but I'm not.

The basic truth of the matter is, there are lots of foods out there that not EVERYONE can eat. Wheat is one of these foods. Celiac is a pretty rare disease. I don't eat wheat because my body can't handle it but if someone I know is eating a sandwich and he's enjoying it and not getting sick: good for him. I spend enough time worrying about what I'M eating to get into someone else's face and lecture him on slave traders and the USDA.

[Rachel--24]

Celiac is a pretty rare disease.

Not trying to get into a debate or anything but Celiac isn't "rare" by any means. Its probably the most common genetic disease there is. I don't think 1 out of every 133 people is very rare at all. I believe I read that in Italy they test all children before the age of 12. At least over there they realize the prevelance of this disease and are not "ignoring" it like here in the U.S. If you include all of the people who are intolerant to gluten *without* Celiac Disease...well then the amount of people negatively affected by wheat is actually astounding...in my opinion.

My Mom's husband is what anyone would call the picture of perfect health. HE thinks he's perfectly healthy and as far as I can tell he has tons of energy...works two jobs and looks just fine. The man pretty much ONLY eats gluten...he eats cereal for dinner. Nobody would know that he has "D" after nearly every meal and sometimes before he's even done with his meal. He's spends quite alot of his time in the restroom. For him this is perfectly normal. My mom told me he was lactose intolerant for 2 years but now he's just fine with milk. He also has bad excema where apparantly his hands crack and bleed. Nobody else would ever know these things about him though. He does appear perfectly healthy. I really dont think it's normal to have "d" after every meal but I've never said a word about it. I believe its highly possible he could have celiac. My point is that even those who *seem* perfectly healthy may have issues you know nothing about. Just because so few people are actually diagnosed with celiac doesnt mean very few people have it.

[CeliaCruz]

1 in every 133 people? Less than 1% of the population? That's rare. Sorry.

And if your mom's husband has eczema and diarreah after every meal, he obviously has a problem. Those were my exact symptoms. Just because your mom's husband doesn't identify himself as celiac or gluten intolerant, doesn't mean that there aren't plenty of people in this world who honestly don't have these diseases. Sure, lots of people are in denial, but that doesn't mean that everyone who claims not to have celiac actually has celiac. Lots of people deny that they're alcoholics. That doesn't mean that every single person is an alcoholic. Some people handle their liquor just fine. Some people merely claim to.

[jerseyangel]

I don't want to be confrontational, but 1 in 133 people to me is common. I've read more than one article (one in Prevention Mag.) that describes Celiac as once thought to be rare, but is much more common. Maybe you saw an older article?

[Rachel--24]

1 in every 133 people? Less than 1% of the population? That's rare. Sorry.

And if your mom's husband has eczema and diarreah after every meal, he obviously has a problem. Those were my exact symptoms. Just because your mom's husband doesn't identify himself as celiac or gluten intolerant, doesn't mean that there aren't plenty of people in this world who honestly don't have these diseases. Sure, lots of people are in denial, but that doesn't mean that everyone who claims not to have celiac actually has celiac. Lots of people deny that they're alcoholics. That doesn't mean that every single person is an alcoholic. Some people handle their liquor just fine. Some people merely claim to.

OH...I'm not saying that everyone has Celiac. Celiacs arent the only people who have problems with gluten. Just from reading the threads on this forum you can see that the majority test negative even though they have the symptoms and the symptoms clear up on the diet. So yes...if you want to talk about individuals who are "oficially" diagnosed with celiac then...yes...it is a rare disease here in the U.S. Nobody's even heard of it. If you want to talk about people who test negative for Celiac or never even get tested but *still* benefit greatly from removing gluten in their diets. Well...thats another story.

I don't want to be confrontational, but 1 in 133 people to me is common. I've read more than one article (one in Prevention Mag.) that describes Celiac as once thought to be rare, but is much more common. Maybe you saw an older article?

Jersey,

This is my understanding as well. I've seen articles in 3 major newspapers which addressed Celiac and referred to it as common but yet "grossly underdiagnosed". The San Francisco Chronicle (in my area) had a 3 page article about Celiac and the gluten-free diet. "Rare" diseases generally dont get that kind of recognition but I think there is still a LONG way to go before people really learn about this disease. Yes...if you read up on it...it usually states that it *used* to be considered rare but is now believed to be quite common.