Clueless Doctors

[Joe Hoffman]

My brother in law was at a football game yesterday and was sitting next to a doctor. He told him I had Celiac Disease and the Dr said

[kenlove]

A lot I think.

How long did it take them to diagnose you?

Took them 6 months to figure me out including a few weeks of being treated for Parkinsons, three trips to the hospital

and a host of other useless expensive tests.

Finally my old doc in Chicago sent me a list of things for the doc here to do. That solved the problem.

Ken

My brother in law was at a football game yesterday and was sitting next to a doctor. He told him I had Celiac Disease and the Dr said

[ravenwoodglass]

A lot I think.

How long did it take them to diagnose you?

Took them 6 months to figure me out including a few weeks of being treated for Parkinsons, three trips to the hospital

and a host of other useless expensive tests.

Finally my old doc in Chicago sent me a list of things for the doc here to do. That solved the problem.

Ken

6 months, boy were you lucky. Many are like me, it took technically 40 years for me to get diagnosed, although I only had daily D for 15 YEARS of those 40. Unfortunately the mindset and informational level of the doctor mentioned is all to prevelant in our pharmacopic society.

[darlindeb25]

Yeah, I was thinking how lucky to be diagnosed in 6 months--WOW. I am right up there with Raven. My sister had vitamin deficiencies as a young child and had to take special liquid vitamins then and was not diagnosed until age 42, I was 45. I will say, there were years when we were not "as sick" but then the years after the birth of our children, we were very sick and none of the doctors could figure it out. The average diagnosis time is 11 years, 6 months is great.

It's true though Joe, even many doctors who do diagnose celiac, do not understand what a patient needs to do after diagnosis.

[nutralady2001]

Try 47 years of being told you had "IBS" after initial symptoms at age 12 and "ezcema" at age 15 So many things make sense now, the "IBS" is Celiac Disease (diagnosed by positive biopsy October 2007 and subsequent positive antibodies November 2007) and the "Ezcema" I am sure was DH

[hayley3]

Becoming a doctor used to be something you did because you were fascinated by the health field or you yearned to help others.

Now it is just about the prestige and the money.

That's pretty bad though, "he just can't eat bread"!

I've been sick since they took out my gallbladder and that was in 1982. I currently have a dx of IBS.

[Ursa Major]

I had to self-diagnose after 50 years of misery. A bowel cleanse I tried to help me feel better in May 2005 put me over the edge, and I had watery diarrhea for six months, being extremely ill (before that I had on and off D and C my whole life, along with gas and bloating, joint pains, brain fog and other symptoms). My doctor ordered all kinds of tests, which all came back negative. I went to the hospital emergency three times because of dehydration, and was treated like a joke.

When I finally figured it out, and the gluten-free diet brought immediate relief from the D, my doctor said, "I knew you had all the symptoms of celiac disease, but I didn't test you for it, because you are overweight, and so I didn't think you could have it". I gave her a half an hour lecture on many people with celiac disease being overweight, not underweight.

My naturopathic doctor (who I didn't have then) said, when I told him about it, "doesn't she know that unexplained weight gain can be a symptoms of malnutrition, too?" Apparently not. I explained that to her, too (got to educate our doctors, right?).

[Offthegrid]

The comment that I absolutely hate the MOST is "oh, you just can't eat bread, that's not so bad." Yeah, right.

I was lucky that my aunt was already diagnosed. Otherwise I'm convinced no doc would have figured it out, or at least not for a long time. I went to one doctor for about 6 months with various symptoms, and then switched doctors and mentioned it to the new one as a possible reason for my problems.

[loco-ladi]

with my "local Dr" it was "acid reflux" and he kept throwing pills at me left and right that didnt work, I finally gave up as he obviously wasn't looking where he should.....

fast forward a couple years of playing russian roulette at the dinner table.....

Visit a relative they hear about my digestive issues and offer me "the list" but no idea why those things effect her........

I copy "the list" take it to the dr who SWEARS I am talking out my behind and its all in my head cause i have acid reflux (now stop laughing I know its funny NOW)

I take my "list" to a dietician she is confused about many of the items on the list but "quite a few" have wheat in them.....

I took it from there, dr refused to do any tests, told him to take a long walk off a short pier did more research started my wheat free diet........ NOT cause they hide it everywhere.....

Officailly gluten free for almost 1 year (WOW it seems like just yesterday, lol) seeing a diff dr who says she doesn't care if I eat gluten or not my symptoms are gone close enough for her!

[kenlove]

All of the comments show how important it is to keep celiac in the media. Having never heard of it until I got it,I was surprised at the numbers of people I know who do have it or have a relative who suffers.

The more I read here the more I believe it's a disease caused by civilization if you will. Big Agribusiness with their changed wheats in the 60s etc. Would be interesting to see a graph comparing wheat use and consumption from 1960 along side of one showing the increase of celiac, parkinsons, lupus and so on..

Ken

[Tim-n-VA]

A half-hearted defense of the doctor. It isn't clear what the situation is but why would anyone solicite medical advice from a person trying to watch a football game?

[hayley3]

I have wondered many times whether something changed with the wheat or what? Wasn't celiac disease discovered before the 60's? My aunt is 83 and I ask her all the time about what she ate. She has diverticulosis and has nausea quite often lately, so she has had her share of stomach troubles, but she has made it this far and she is healthier in some respects than I am. She is Irish too. She lived on a farm where they baked their own bread, but she didn't eat alot of bread, she only ate biscuits. I sometimes wonder if it isn't the yeast along with the gluten flours that irritated the intestines which then set off the immune system because on the prairie they used sourdough. I know that some say they have tried sourdough and it still makes them sick. I wonder if they have tried it after their intestines healed?

The more I read here the more I believe it's a disease caused by civilization if you will. Big Agribusiness with their changed wheats in the 60s etc. Would be interesting to see a graph comparing wheat use and consumption from 1960 along side of one showing the increase of celiac, parkinsons, lupus and so on..

Ken

[kenlove]

Its a good question. I think in general people were much closer to their agricultural roots in the 50s. Growing up in the 50s were were the first generation to eat a lot of the additives, fast foods, tv dinners and such, at least in the US and in other countries affected by US agribusiness. In the 60s with the change in wheats it further removed us from the farm. It was simply easier to buy bread rather than make it. If we did make it, we used commercial flour made from the new wheats.

Although celiac has been around since way before the 60s the rapid increase in people affected in the past 10 years seems to be related. I've had an office in Japan for 30 years where people seldom ate bread -- 15 years ago it was even hard to find in many grocery stores. There were only a handful of cases reported until a few years ago. Now it's a growing concern because of children with severe wheat allergies and increases in other food allergies. There seems to be a growing correlation between that and the increased western diet. ie: McD's etc.

I hope someone can figure it all out one of these days...

Ken

I have wondered many times whether something changed with the wheat or what? Wasn't celiac disease discovered before the 60's? My aunt is 83 and I ask her all the time about what she ate. She has diverticulosis and has nausea quite often lately, so she has had her share of stomach troubles, but she has made it this far and she is healthier in some respects than I am. She is Irish too. She lived on a farm where they baked their own bread, but she didn't eat alot of bread, she only ate biscuits. I sometimes wonder if it isn't the yeast along with the gluten flours that irritated the intestines which then set off the immune system because on the prairie they used sourdough. I know that some say they have tried sourdough and it still makes them sick. I wonder if they have tried it after their intestines healed?

[hathor]

I think with the increase in processed food, the amount of gluten consumed has also probably gone up. The average diet has also gotten worse, which may make it harder for bodies to cope with something that is hard to digest. Add to that, you have the gluten content of wheat being deliberately and substantially increased in the last 200 years. My theory anyway ... I don't know if anyone knows for sure or can possibly know.

For instance, a month ago or so I saw a study showing that the prevalence of celiac has gone up in Finland in the past few years. The researchers saw no increase in testing and said it had to be due to something else. But they had no idea of what. The only thing distinctive I can find about the Finnish diet is that they are at the top for dairy consumption. They also have among the highest Type 1 diabetes rates in the world. All related?

Anyway, doctors sometimes are clueless. I don't mind that so much by itself. It would be impossible to be an expert in everything medical. But some doctors seem to be incapable of admitting that they don't know or aren't familiar with something. Heaven forbid they would say that they would have to look into something. My husband's father was a doctor, and so my MIL dealt with lots of them socially. She said many had a God complex -- they are always all-knowing and aren't to be questioned by patients, nurses, or anyone else.

Fortunately, there are exceptions. I don't mean that all doctors are like this.

[sneezydiva]

I have wondered many times whether something changed with the wheat or what? Wasn't celiac disease discovered before the 60's? My aunt is 83 and I ask her all the time about what she ate. She has diverticulosis and has nausea quite often lately, so she has had her share of stomach troubles, but she has made it this far and she is healthier in some respects than I am. She is Irish too. She lived on a farm where they baked their own bread, but she didn't eat alot of bread, she only ate biscuits. I sometimes wonder if it isn't the yeast along with the gluten flours that irritated the intestines which then set off the immune system because on the prairie they used sourdough. I know that some say they have tried sourdough and it still makes them sick. I wonder if they have tried it after their intestines healed?

Shari Lieberman's book "The Gluten Connection" actually explains this very well. She very effectively presents evidence that when man first started growing wheat, their health suffered. Then the industrial revolution brought about more abundant wheat, and man's health suffered, and then the boom of prepackaged foods starting in the 1930s, Wheat with more gluten in the middle of the century, the low fat craze of the 1980s, which caused people to eat more grains all correlate with increased health problems. It is very compelling. It had me convinced even before my all my testing was done that everyone in the world needs to eat less gluten.

[kenlove]

Thanks, just ordered the book on Amazon. I have to wonder how the modified wheats of the 60s have affected our health as well as wheat in general.

Shari Lieberman's book "The Gluten Connection" actually explains this very well. She very effectively presents evidence that when man first started growing wheat, their health suffered. Then the industrial revolution brought about more abundant wheat, and man's health suffered, and then the boom of prepackaged foods starting in the 1930s, Wheat with more gluten in the middle of the century, the low fat craze of the 1980s, which caused people to eat more grains all correlate with increased health problems. It is very compelling. It had me convinced even before my all my testing was done that everyone in the world needs to eat less gluten.

[tallfran]

I agree that Agri-Business and modifying wheat to add more gluten has a lot to do with our troubles.

But again, in defense of the doctor, he at least knew that celiac has something to do with gluten intolerance. It was not a clinical setting and we have no idea what kind of doctor he is.

And he is right, if somewhat simplified! We can't eat gluten. When you see some of the truly horrible things out there (I work in the healthcare field), we are so lucky. We simply stick to a diet that excludes gluten, and sometims other things, and that's it. We don't have to take multiple medications, we don't have to have surgery, we don't need to give ourselves injections several times a day like my dad did for almost 60 years (Class 1 diabetes). We don't have cancer, like the 26 year old sister of one of my co-workers who was just diagnosed with Stage 3 ovarian cancer. We aren't paralyzed. We don't have a disease that continually progresses like Parkinson's or Alzeimers. We aren't limited in our mobility.

We are just so lucky. I think for some the glass is always half empty...

[ravenwoodglass]

And he is right, if somewhat simplified! We can't eat gluten. When you see some of the truly horrible things out there (I work in the healthcare field), we are so lucky. We simply stick to a diet that excludes gluten, and sometims other things, and that's it. We don't have to take multiple medications, we don't have to have surgery, we don't need to give ourselves injections several times a day like my dad did for almost 60 years (Class 1 diabetes). We don't have cancer, like the 26 year old sister of one of my co-workers who was just diagnosed with Stage 3 ovarian cancer. We aren't paralyzed. We don't have a disease that continually progresses like Parkinson's or Alzeimers. We aren't limited in our mobility.

This is quite accurate but ONLY when we are diagnosed in time. There are links between dementias and undiagnosed celiac, there is also a strong corelationship between undiagnosed celiac and cancers of the GI tract and lymphomas. The chronic inflamation can damage our hearts and other organs. Undiagnosed we do live off medications that do no good and are many times toxic. I don't even want to think of the drugs that I was given that are now pulled from the market. I don't even want to think about the impact the failure to diagnose had on my mobility and continence. Yes the treatment is simple and very effective. But a great deal of damage is done to our systems while the clueless pharmacopic medical community searches for drug treatable parts of this disease while failing to even look for the cause. It took me over 40 years to get diagnosed and a great deal of damage was caused because US doctors didn't even look for it for 35 years and then they relied on just the blood test to confirm whether I was celiac or not.

Undiagnosed celiac keeps our medical professionals very busy and runs up health care costs. The year before I was diagnosed we spent 17 thousand dollars on just co-pays for doctors, tests and drugs. We now barely meet our deductable. The most important thing is though that I am alive, myself and my family are pretty certain I would not be if not for a very savvy allergist who finally diagnosed me.

[darlindeb25]

Raven has a good point--yes, I am very happy that celiac disease is what I have and not Parkinsons or MS, or cancer, yet years and years of misdiagnosis has also stressed my body in a way that it will never recover from. Just the stress from all those years alone, caused damage, then there is the physical damage. As, I am so sorry, names fail me at times (another celiac symptom), her name will come to me as soon as I post, the wonderful lady from Canada who is German, as she has said, so many people who are malnorished, so often do, I became very overweight, that was a great stress on my body and I could never understand how I could be so sick, have diarrhea all the time and still be overweight. When I was my sickest, I was also my heaviest! So doctors, of course, would think I was just eating myself to dead. Even now, I am overweight and have gained 25# in the last yr, and I know I am malnorished as I write this, my doctors are still telling me I am healthy, yet I know something is not right and I eat an average of 900-1200 calories daily and it's not junk food either. I walk 25 mins most days--it's very aggravating, something is wrong. when I gain, I know something is off.

From my years of misdiagnosis, I have peripheral neuropathy, small fiber neuropathy, raynauds, and now, I am sure I am suffering from adrenal fatigue, the doctors just have not figure it out. One thing celiac disease did give me, is my daughter. I was taking birth control pills and because of undiagnosed celiac disease, I was not absorbing them, so I did get pregnant with a girl, I had 4 sons at the time, so I do have to be grateful to celiac disease for her. I do love her and I always wanted a daughter too. I did lose 40# while pregnant though, and she was born with no hip socket on the left side and had to have major surgery at 2 1/2 yrs of age, and to this day, (she is 25) she has so much pain in that hip--I blame myself for her pain, even though I know it's not my fault I have celiac disease and not my fault I didn't know I had it then.

So yes, I do blame doctors, yes, I do not think they look hard enough sometimes. We give them all the clues they need and so often, they ignore us. Two of my sons asked their doctors to be tested for celiac disease and both doctors told them they didn't need to be tested because, "You don't look like a celiac!" Now, what exactly do we look like?

[hayley3]

Agree 100% with ravenwoodglass!

I have thyroid disease, osteoporosis, sacroilitiis, and I have cracks in my feet that bleed and are painful, etc., etc. And I am very bitter toward doctors. Not because they didn't diagnose me, but because of the humiliation that I experienced from being told it was all in my head, from the looks of disgust they gave me, and even the anxiety diagnosis they wrote on my chart. I will never look at doctors the same way again. I can still see the eyes of that first doctor that just shook his head and said, "You're just fine, maybe there's something else that's not right in your life, so take these antidepressants".