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Yesterday, Ant sent me a link to a thread on a celiac board, that fits right in with all the recent discussions on our own board about GI specialists who can't make up their confused minds about whether or not a patient has MC, and GI docs who decide to "undiagnose" a patient because of their confusion. It's not just MC. Obviously, some of these guys can't even diagnose plain old celiac disease. This whole gluten-sensitivity issue really has many of them totally confused. Imagine how inadequate they must feel, to have all that professional training, and a certificate on the office wall proclaiming them to be a specialist in GI issues, and they can't even decide how to diagnose celiac disease or microscopic colitis. Consider this quote from a post at the following site:
Hi I had a positive biospy in oct 10 but my bloodtest were negative so the GI said it was prob not likley celiac. I was still have probs going the bath C&D so he did a colonoscopy and that came back with microscopic colitis. So I told him though that I was still having problems so he said well microscopic colitis could from celiac lets do another endoscopy. So that has brought me to Last monday and I have another endoscopy done. I went today for the results and it doesnt show villious blunting like my previous one did. So now my doc said I most likly dont have celiac that whatever cause the villious blunting before is going away. I told him I dont think so becuase I still fell like crap all the time. I went gluten free for 4 days and I ate gluten on fri and I felt like crap all weekend he said well maybe thats in your head feeling better.
Is that pathetic, or what. The GI medical community really needs to get their act together, and decide how to handle gluten-sensitivity, and the diseases that result from it, because this is rapidly becoming a major issue.
Thanks Ant.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
That's truly pathetic, but also pathetic that the patient wouldn't take the news of the positive biopsy and assume he's got Celiac regardless. My MIL is getting celiac bloodwork this week. She has every classic symptom, but I'm fearful the bloodwork will be negative, and she'll say "I told you so," go back to poisoning herself, and go on complaining of her laundry-list of gluten-induced ailments!!
IMHO, they don't want to deal with it because they don't have a drug to treat it with. After I had C. diff., when I was trying to figure out what was still going on, I literally had every test in the book: ultrasound, CT scan, gall bladder test, C. diff drugs again, etc. He would tell me to point to where is was hurting, and then laugh at me, saying there was nothing there to hurt. He was finally about to put me on a "black box" drug for IBS, when I insisted on another colonoscopy. Guess what? CC and LC. He put me on Asacol, as I can't take steroids. They only thing Asacol did for me was to make half of my hair fall out. His answer? "You're not bald yet." Nothing about diet, triggers, etc. He told me to go to a pain clinic if it hurt. It was only when I came here that I realized I wasn't a "freak of nature", in his words.
I am only a little mad, because I realize now that he really does not know any better. He and his associates have one of the best practices in GA, and they do remarkable things.
Somehow I wish that the celiacs and the MC folks could come together and push for a re-education of the GI community. Wishful thinking, I know.
Exactly. People have a right to trust their doctor, after all, that's why they're paying for professional advice, instead of listening to free advice from a non-professional. It's just a crying shame that so many doctors are too insecure to use their common sense in a situation such as that, and so they blindly rely on a near-worthless test, instead, to make their decisions for them. Thanks to an oversupply of lawyers, and free training by pharma reps, doctors are afraid to think for themselves, these days, and they quickly learn that they can "get by", and stay out of trouble, if they don't think for themselves. About the time that doctors stopped making house calls, the next generation began to stop thinking for themselves, IMO. I guess that's natural evolution, FWIW.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
On a dutch celiac board I read message like this one so now and than too. I am not 100% sure, but I think the policy in the Netherlands is, positive blood test, negative biopsy means no celiac disease, so no diet. The other way around negative blood test, positive biopsy means celiac disease and a life long diet.
Also in the Netherlands only a march 3a of higher (I hope a 3a exists, other wise it is 3b and/or 3c) is official celiac disease. A march 1 or 2 is official no celiac disease. Some GI's will advice to go on a diet, others will say, keep on eating gluten. But I am sure they will monitored (at least I hope).
With celiac you can end up with to types of doctors here, a GI (in dutch called a stomach, liver, bowel physician) or a doctor specialized in internal medicine (don't know the right word for it and google translator is not really helping me). If you end up with one out of the last category, well quite often you better go and look for another doctor (read a GI), it is sometimes really amazing what some patients here. "it is okay to gluten so now and than, wouldn't do much harm" "no it is not needed to have family members tested for the disease too" "a dexa scan, why?"
another stupid mistake quite a view GP make is, after a positive blood test put patient on a diet and refer them to a GI. Since here it always takes 3 tot 6 weeks to get your first app, it is for a GI very difficult to say if and how big the small bowel damage is.
But what also keeps amazing me from members of my dutch celiac board (not all but some of them), that when they don't have an official gluten diagnosis, there blood work and biopsy is negative, but doing so well on a gluten free diet. But than still they keep on looking for proof and start after a while eating gluten again, feel like crap.Than I think how much more prove do you need?? I read this quite often about mothers with young children. Really the stories are so said, and they really don't know what to do anymore. They try out gluten free and their children feel so much better. But since they have no official diagnosis, they start feeding them bread and muesli again.
So yes it is the doctors that have sometimes no idea what they are talking about. But your health is not only a responsibility of your doctor. We can also make our own choices and thanks god we don't need a doctor to do a gluten free diet.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Zizzle wrote: My MIL is getting celiac bloodwork this week. She has every classic symptom, but I'm fearful the bloodwork will be negative, and she'll say "I told you so," go back to poisoning herself, and go on complaining of her laundry-list of gluten-induced ailments!!
Zizzle, that is exactly what I mean!!!
and by the way MIL means mother in law (just a random guess)?
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
man, exactly and how is this for the GIs, I had my colonoscopy, afterward he reviewed the photos with me and said everything was fine, came back a month later and saw (little did I know) a student who said the colonoscopy was fine, and after 7 months of agony went back to learn that I had Microscopic colitis!
That is disgraceful! Honestly, that doctor should be reported to the medical board for stupidity. Their oath is "First, do no harm". How on earth can they be doing no harm to a patient who is improving on a gluten-free diet when they tell them to go ahead and eat gluten because he doesn't see damage anymore after they have been gluten-free? I'm not one for running to a lawyer, but someone needs to wake that GI up!
My husband works with a man who has celiac disease. He has been gluten-free for 3 years. His doctor recently told him that is would probably be ok to cheat once in while. What??? There's another guy who needs a visit from a process server, IMO.
But as Harma said, your health is not ONLY your doctor's responsibility. You are (or should be) an active participant in your own health.
The more I hear the more I like my GI, who diagnosed me with non-celiac gluten sensitivity (actually he called it intolerance) just by hearing how well I am doing gluten-free. I am thankful.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
This reminds me...my father-in-law told me his colonoscopy was normal. His doc said there was "just a little inflammation" and sent him on his way. Whaa!?!? I tried to tell him it was probably MC caused by his virtual addiction to ibuprofen, and woukd explain his incessant gut gurgles and mornings spent in the bathroom, but he blew me off because doctor knows best!
I told him he'd be calling me when the big D hits!
Your doc was right when he said everything looked OK to his eyes and in the photos right after the colonoscopy.
That is the hallmark of MC - it looks OK to most GI docs during the actual colonoscopy and is only picked up under the microscope by the pathologist (hence, the name microscopic colitis). In the case of "major" IBDs like Crohn's or ulcerative colitis, the inflammation is seen right away during the scoping and is often severe.
Where the system failed was not getting back to you with the results of the patholgist's report immediately. That is indeed sad.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
All of these posts just brings back too many memories of so many visits w/ Dr's. pertaining to me & members of my family. Question: Why waste time trying to diagnose Celiac when one knows that GF diets work on them? Since I'm new, just wondering, as I don't think I want to go through all of that testing, had rather keep trying this GF diet first, get tested at Enterolab, etc. What would make a difference if one knew? I may be missing something here about knowing for sure.
Tex, I read the links concerning the Neurological link w/ gluten intolerance. Boy, what mind boggling information, at least for me. However, I don't think it would make any difference to even tell the Dr's. They just don't seem to get it about diet.
When my husband got the pancreatitis after getting the gallstone in the pancreatic bile duct, we had a consultation w/ a gastro Dr. who told him it made no difference whatsoever how much sugar he ate, said just to watch his fat intake. He later bought the house next door to us. I can hardly stand to look at him. He was so arrogant discussing this with us, and when my mother had a colonoscopy, she said he just about killed her, he was so rough & she would never use him again, yet he is so revered here, mostly because he supposedly has the intellect to use some machine that the rest of them don't know how to yet.
You can't change the wind, but you can adjust the sails.
I was diagnosed 3 years ago with Celiac disease by endoscopy. I had every classic symptom, abdominal pain, cramps, D after eating anything that contained gluten. However, my blood tests came back negative. I know I def have it and there is NO way I would go and do an experiment "just to see what happens" if I ate a piece of regular bread. It's not worth it to me, I'm perfectly happy with my GF Udi's bread and NO more stomach pains! well except for my LC..
Visit the Microscopic Colitis Foundation Website
What??? There's another guy who needs a visit from a process server, IMO.
