Monday, May 5, 2014

Celiac is stupid

May is Celiac Disease Awareness Month.  Yay! (Unless you are Dr. Davis who believes wheat is a poison so a bad reaction to it cannot be a disease.)

I recently became aware that about 1 percent of people in general have celiac, but that two percent of seniors are diagnosed with it.  Rheumatoid Arthritis is the one people usually think about when they think of old people, and it is in the AI screening panel blood test.

Now the really interesting thing about RA is that while most people associate it with pain, limping and gnarled fingers, it can cause all sorts of other problems, and can look pretty much just like lupus.

So, how do you tell the difference?  Almost all AI diseases are diagnosed on the basis of autoantibody blood tests.  Except celiac, because celiac is stupid.  For celiac, they make you continue to do exactly the thing that makes you sick, and do it long enough for there to be permanent intestinal damage. 

Docs supposedly well-versed in celiac (almost ALWAYS pediatric enterologists - this is why they know so much about celiac in older people!!!!@!) demand that an invasive endoscopy be performed, despite what a silly little blood test does for all the other autoimmune diseases.  That is how they make their money.  Oh, I guess they can use the procedure to rule out other gastrointestinal diseases, but REALLY, if there are no gastro symptoms to go on, the test would be a total waste of time.

Let's go through the math.  Lets start with what we'll call PATHWAY A.  Lets say you are young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway B.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive celiac diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you have celiac and that you need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat.

Pathway C.  Now lets say you are still young and have gastrointestinal symptoms that totally go away a few months after ditching wheat.  You bring back the wheat, and the symptoms return.  You decide you would like a definitive diagnosis and so decide to do the endoscopy and maybe a blood or genetics test.  Your results indicate that you do not have celiac and that you don't need to give up wheat for life.  What would a sane person do with this information?  Answer:  give up wheat anyway.

All pathways lead to the same outcome, giving up wheat.  Therefore, it doesn't really matter what tests you do, the outcome is exactly the same.  But Noooooo, in CeliacLand, they force you through  either Pathway B or C.  This is why celiac is stupid.




12 comments:

  1. I remember watching the show "Second Opinion" on PBS about CD, a moment was interesting - one doctor said (my recollection, not an actual citation) "Could a person suspect that he /she had a CD if he/she felt better after giving up gluten, and worse after the reintroducing?", another doc cried "Absolutely not, everybody would feel better after not eating a gluten - it is the hardest protein to digest"

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  2. I would have concurred if not for the opinion of a celiac confirmed friend of mine. She thinks it is important to know in order to not just simply avoid gluten but be extra-careful avoiding cross-contamination that presumably wouldn't be a problem for a non-celiac person.

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  3. one of those "DUH moments" -- if you feel better not eating something, why the hell should you continue eating it???? only someone with ulterior motives would suggest you should.

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  4. Serdna, I can see her point of view, but I don't think the biopsy is necessary for everyone, in order to be extra careful. In my case, having a positive blood test over a month into removing gluten 100% is enough for me to be extra careful. Unfortunately, I have some other things that are bothering me just as much, but I am not emotionally ready to get on a complete elimination plan this week.

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  5. The reason that people with suspected CD/gluten sensitivity are instructed NOT to give up grains before an official diagnosis is that the medical establishment thinks that giving up wheat is DANGEROUS because doing so means you are not getting IMPORTANT NUTRIENTS--you know, the ones they have to PUT back into processed grains in the first place. According to that logic, your danger of malnutrition is much greater than your danger of unchecked celiac disease and who cares about the side effects of all the drugs they pour into you to treat the symptoms of gluten sensitivity--whether it's from CD or not. (And whether or not you can absorb those nutrients with a seriously impaired gut, in the first place!).

    I was particularly struck by something Dr. Terry Wahls (Wahls Protocol) said in an interview. Once she realized that she needed to get certain micronutrients from foods instead of supplements, her first step was to ask her colleagues--registered clinical dietitians, what foods provided the particular nutrients. She laughed about it but it's not really funny--THEY DIDN'T KNOW! These are the same people who don't know you can get the same nutrients provided in the fortified grain products we eat in other REAL foods.

    So the medical establishment thinks you're better off risking harm from CD and gluten intolerance and the drugs that treat the symptoms than to eliminate grains because of the mistaken belief in malnutrition.

    The other ridiculous thing I've seen is that some doctors complain that CD patients gain weight when they eliminate gluten. Ya think??? These people cannot absorb nutrients, and can't eat because of the ravages of the disease. Once they heal their guts, they can eat and for the first time gain weight from (hopefully) good nutrition! Why is that a problem????

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    1. Oops, I should say "One additional reason" I know it's also to try to get a positive test.

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    2. Oh Lordy. Those dietitians! Don't they know they have SOFTWARE for that sort of thing these days? Gosh, even I could have gone to the hard-copy handbook with all the foods and nutrients. Just look 'em up. Or.....spray the wheat flour with them and make everybody eat it.

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  6. Wheat is a grass and grass is for cows to eat, not humans, unless we can grow our own rumen.

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  7. Good point Lisa.

    Also I'm with Tess when she said "if you feel better not eating something, why the hell should you continue eating it????"

    Thinking of you EB and wishing you .....

    All the best Jan

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  8. There are things I should be eating strictly in a moderation I can't completely stay away from - tomato sauces, smoked meats, fish. If not, I get a reminder from my eczema and my rosacea.

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  9. I am with you, I had the blood test that I can't remember the number but the MD said it was "Off the charts"! By the time I got my GI consult, I had been off gluten for 30 days and actually teared up when the GI doctor told me it would take 4+ WEEKS back on gluten to do an endoscopy! No, thanks! I could not let myself get that sick again! I was in so much pain I couldn't get off the couch! I find it stupid too!!

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