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Jocelyn357

Doc Called Enterolab "quackery"

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Ok. So here's my story. I've had constipation, bloating, acid reflux, severe/quick weight gain, panic, etc for 8 years now. I decided to first start with enterolab. I know my symptoms are not "classic" celiac (weight loss/diarreah, etc), but have been hearing that you CAN be overweight and have my symptoms. SO, all my enterolab results came back positive, and I immediately went gluten-free. I was feeling great until the 6th week, I started getting nausia, and bloating again. So I ended up at the GI for the first time and here is what he said:

"Let's get one thing straight. There is NO such thing as a reliable stool test for sprue. That is pure quackery. Furthermore, looking at your symptoms, I can tell you right now you CLEARLY do not have sprue. In 25 years I have yet to see a celiac patient who has weight gain problems. In fact, if you think you're fat now, and we "fix" your malabsorbtion problems, you can expect to start gaining alot more weight. See, celiac is the disease of the month right now. Everyone wants to have. They want to have something to focus on in life right now, and for them, this is it. In fact, I think all this support group nonsense is really getting out of hand. It's become an obsession with these people! It's like their obsessed with finding every last molecule of gluten on the earth, and sitting around to talk about it. Rediculous. If you ask me, you probably have Irritable Bowel, and you're following this crazy gluten thing for no reason. So let's go ahead and have you return to gluten, and we'll do a biopsy in 2 weeks to put your mind at ease. I have 7 colleagues in this building that will all tell you the same thing. See you in 2 weeks!"

UGH! I am so confused. I thought being overweight was a potential sypmtom. But he says people that are overweight and claim to be celiac have probably never actually been diagnosed, and they are confusing everyone. He says he has lots of REAL sprue patients, none of which are overweight with constipation. Now what do I do if my biopsy/blood work come back negative? Especially since I started feeling bad again?

Jocelyn

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Jocelyn--I'm so sorry that happened to you. What that doctor said has made me so mad--what planet is he living on? 20% of diagnosed Celiacs are obese according to Dr. Green's new book. There are plenty of overweight Celiacs--I being one of them! Nobody WANTS to have Celiac--its just that so many of us have been mis or undiagnosed for so long that when the pieces fit, and we find at long last that this is the cause of our illnesses, we want to do everything we can to regain our health. If you've been gluten-free for 6 weeks now, eating gluten for two weeks will most likely not be enough time to get an accurate biopsy. The result will be negative, and the doctor will proclaim himself "right". IBS is a catch-all diagnosis that doctors use when they can't/won't find out the real cause of a person's symptoms. You do what you need to do--I personally would not go back to this doctor. It is not uncommon for us to feel bad again after a month or two gluten-free. The recovery is often uneven. You may be getting more sensitive to smaller amounts of gluten--I would go back and check on your personal care products, meds and vitamins, your kitchen for CC, etc. Make sure you're 100% gluten-free--it takes time, but it's worth it. I'm 10 months into it, and still having problems at times. But when I look back at this time last year, I am so much better overall. Best of luck :)

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I am sorry to tell you, but I would find a new doctor. Only 40% of Celiacs have the classic symptoms. I believe the overweight or obese people account for 50% and the last 10% are normal weight. Your doctor is way off base and ignorant of what Celiac is. Also by eating gluten for two weeks, might not be enough to give you a positive and you could have a false negative, which is not uncommon. Also is he going to run the full panel, which consists of 4 or 5 separte tests? If he is ignorant on this subject, he will only be running one, possibly two.

You also might consider giving up dairy until your small intestine heals. Dairy gives the same reactions as gluten until we are totally healed. Good Luck.

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Armetta- If that's how your doctor really acted that was rough...but he/she may have also been in a position where they were trying to help you understand that it may be a stress related thing, or something simpler than celiac. Doctors are trained to look for horses and not zebras.

I would go ahead with the gluten challenge, get the biopsy and get a firm diagnosis if you have celiac. You need to know for your longterm health and at least your g.i. is going through with a straightforward, gold standard biopsy.

I feel strongly about getting a firm diagnosis, if you can tell.

AmandaD

Armetta- If that's how your doctor really acted that was rough...but he/she may have also been in a position where they were trying to help you understand that it may be a stress related thing, or something simpler than celiac. Doctors are trained to look for horses and not zebras.

I would go ahead with the gluten challenge, get the biopsy and get a firm diagnosis if you have celiac. You need to know for your longterm health and at least your g.i. is going through with a straightforward, gold standard biopsy.

I feel strongly about getting a firm diagnosis, if you can tell.

AmandaD

WOOPS i MEANT THAT FOR JOCELYN

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wow that is just crazy. Sorry to say but I hate having Celiac. I wish I didn't have it and could eat anything in the world that I want :o In my opinion go see another doctor or just go gluten free and see what happens. If you feel better stick with it if not see if there is another culprit.

I was always underweight my whole life then in one year I gained 30 pounds and got really sick. (I had been sick the 10 years prior but I got really sick) Turns out it was celiac all along. It caused me to retain water and now I am back to normal. Not over or under just normal. So symptoms can be different for sure. I wouldn't go back to that doctor find a new one though.

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Armetta- If that's how your doctor really acted that was rough...but he/she may have also been in a position where they were trying to help you understand that it may be a stress related thing, or something simpler than celiac. Doctors are trained to look for horses and not zebras.

I would go ahead with the gluten challenge, get the biopsy and get a firm diagnosis if you have celiac. You need to know for your longterm health and at least your g.i. is going through with a straightforward, gold standard biopsy.

I feel strongly about getting a firm diagnosis, if you can tell.

AmandaD

WOOPS i MEANT THAT FOR JOCELYN

I think that if your Enterolab results came back positive and you find gluten makes you sick, then you can safely assume you at least have a gluten intolerance. Therefore, don't eat gluten! :D I think a lot of doctors entirely ignore the concept of non-celiac gluten intolerance, because they just don't have a way to firmly diagnose it (that's not to say you definitely don't have celiac). I don't have a firm diagnosis (I was never tested). However, when I eat gluten, I get stomach pain, D, C, depression, bloating, headaches, itchy skin etc. etc. etc....When I don't eat gluten, those things go away. That's reason enough for me to not eat gluten. Sorry your doctor was so unhelpful!

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Here are some links that you might want to show him. They don't all address weight gain, but they do all talk about how prevalent and underdiagnosed Celiac is.

http://www.uchospitals.edu/pdf/uch_002799.pdf

http://www.celiaccenter.org/facts.asp

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#2

http://gidiv.ucsf.edu/course/things/fasano.pdf

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I think you may have been gluten free too long for a two week gluten challenge to show any accurate test results. I'm so sorry that a doctor isn't knowledgeable enough on Celiac or gluten intolerance to help you. I wouldn't waste any more time or money in this office when the doctor seems to be convinced what it is before he even looked at test results.

L.

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I think a lot of doctors do require some sort of "proof" aka a medically valid diagnosis (aka from a lab they respect and a liscenced MD) before they'll take a patients "word" for it. Which is why I spent an entire year trying to "prove" that I was indeed allergic to corn.

It is very possible to be "fat" and celiac. Just because you've got malabsorbtion problems does not mean you haven't adapted to it and started eating things that were more easily absorbed. (Usually sugars) Also its been proven that several overweight people can eat 1000 calories a day (which if you're eating 3000, you might only be absorbing 1000) and still gain weight as their bodies have gone into starvation mode. Once they start injesting (or absorbing) more calories then their bodies start shedding the excess weight as it signals a time of plenty and no more need to keep excess fat stores.

I'm also not sure on this Enterolab .. the stool sample? I'm not familiar with it so who knows. But if the diet was working for you, it could mean you are in fact celiac. I'm a bit concerned on your 6 week relapse? It could be that you weren't as gluten-free as you thought or there is something else going on as well.. or something else entirely different. The symptoms you mentioned..

Ok. So here's my story. I've had constipation, bloating, acid reflux, severe/quick weight gain, panic, etc for 8 years now.

Can also be caused by food intolerances and food allergies. It would probably be worth it for you to get tested for these as well.

"Let's get one thing straight. There is NO such thing as a reliable stool test for sprue. That is pure quackery. Furthermore, looking at your symptoms, I can tell you right now you CLEARLY do not have sprue. In 25 years I have yet to see a celiac patient who has weight gain problems. In fact, if you think you're fat now, and we "fix" your malabsorbtion problems, you can expect to start gaining alot more weight. See, celiac is the disease of the month right now. Everyone wants to have. They want to have something to focus on in life right now, and for them, this is it. In fact, I think all this support group nonsense is really getting out of hand. It's become an obsession with these people! It's like their obsessed with finding every last molecule of gluten on the earth, and sitting around to talk about it. Rediculous. If you ask me, you probably have Irritable Bowel, and you're following this crazy gluten thing for no reason. So let's go ahead and have you return to gluten, and we'll do a biopsy in 2 weeks to put your mind at ease. I have 7 colleagues in this building that will all tell you the same thing. See you in 2 weeks!"

As for this doc.. you can either do the gluten-challenge and cross your fingers on the results.. or you can find a different doc and start over. And IBS.. is not a diagnosis, its a doctor's copout - aka I don't know what it is.. so it must be IBS.

It's become an obsession with these people! It's like their obsessed with finding every last molecule of gluten on the earth, and sitting around to talk about it. Rediculous.

Yep.. its only rediculous to those who don't live in our bodies. My reply to that is usually "You come live in this body, then you tell me how rediculous I'm being."

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Get that "quack" of a doctor a copy of the book, "Dangerous Grains" -- maybe he will learn something.

Also, email him a link to this thread.

GI's are often so ignorant of the celiac disease world, it often takes some dialogue with knowledgeable and vetran celiac disease sufferers to help them "see the light"

Good luck and Stay gluten-free!

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Guest nini

I am absolutely steamin hopping pissed off at that ignorant ass of a Dr. right now... OMG!!!

First of all I WAS DX BY A GI DR... I did not make this up for sympathy or any other BS.

Second, I was classified as morbidly obese by all my Dr.s prior to my DX... I weighed 260 pounds at 5 foot 2 inches tall... (or short)...

Third, I could not lose weight no matter what diet I tried prior to the gluten-free diet

Fourth, Since being dx'ed and going gluten-free 3 years ago, I HAVE LOST 105 pounds! And this is by eating whatever I want as long as it's gluten free.

Fifth, Find yourself another Dr. or just stick with the Enterolab dx (which IS valid and NOT quackery) and forget that jerk.

I'm sorry you were treated that way, but unfortunately that is fairly typical of the ignorance we see out there. These idiots are stuck in the box of "classic sprue" and are unwilling to consider this as a dx. It only appears to be the fad disease to have right now because it is finally getting the recognition it needs.

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I am another former celiac induced heavyweight and your doctor is the quack. I lost the weight when I went gluten free. It seems that a lot of doctors are going to do everything they can to discredit celiac. The reason is that they can't write prescriptions for it and they don't make money if they don't push pills. Dump the stupid quack and go gluten free, you won't regret it.

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You should print all of these off for that quack of a doctor. I had a dermatologist say the same thing to me about weight and Celiac so, I had him do a skin biopsy for Dh well, the end result was him eating crow. He didn't think an overweight person could be celiac, he also didn't believe dh was anywhere but on knees and elbows. Boy are doctors lame. Needless to say because of this disease I gained well over a 100 lbs in less than eight years. May that jerk of a doctor get what he deserves.

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If I were you, I would never see this guy again and let him know why. I told the the celiac "expert" I've consulted that no one would consider celiac or any type of malabsorption condition for me as I was not underweight. She thought it was absurd - of all the hundreds of celiacs she has seen, she said that only 5% are the supposed "classic" type with wasting, etc. and the majority were normal or overweight.

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Argh, I'm so outraged for you that I had to literally walk away from my computer before I could come back and add my support! He is wrong, you are PROBABLY right (see, I'm even allowing for the scientific uncertainty about the stool testing procedure, since it's not widely accepted at this time). This is no FAD. That's like saying... okay, every time I come up with an example I think how awful I'd feel if I were one of the population in the example so I won't give an example.

As far as being overweight and having celiac disease, NIH disagrees with your supposed expert doctor:

"Gastrointestinal manifestations may include diarrhea, weight loss, failure to grow, vomiting, abdominal pain, bloating and distension, anorexia, and constipation. The presence of obesity does not exclude the diagnosis. It is very common for celiac disease to present with extraintestinal manifestations, sometimes with little or no gastrointestinal symptoms." Section 3, paragraph 2, consensus statement (http://consensus.nih.gov/2004/2004CeliacDisease118html.htm).

Your doctor said, "In 25 years I have yet to see a celiac patient who has weight gain problems." I think what he meant to say was "In 25 years I have yet to CORRECTLY DIAGNOSE a celiac patient who has weight gain problems."

Sigh. I'm still too mad to write coherently. I'm sorry and I feel bad for you. I hope you report the jerk to the medical board, because anyone who says that a person WANTS this disease because it's popular is clearly biased to the extent that his ability to diagnose correctly is compromised.

LOL he's probably just jealous that you have it and he doesn't. (KIDDING!)

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Well I not a voilent confrontationalist like many ppl here, but I would definitly find a new doc. I would have just said "I am sorry you lack the education and training on this condtion, and simply time to keep up with current research. Since your so busy I will not take up anymore of your time." And leave. :)

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"Let's get one thing straight. There is NO such thing as a reliable stool test for sprue. That is pure quackery. Furthermore, looking at your symptoms, I can tell you right now you CLEARLY do not have sprue. In 25 years I have yet to see a celiac patient who has weight gain problems. In fact, if you think you're fat now, and we "fix" your malabsorbtion problems, you can expect to start gaining alot more weight. See, celiac is the disease of the month right now. Everyone wants to have. They want to have something to focus on in life right now, and for them, this is it. In fact, I think all this support group nonsense is really getting out of hand. It's become an obsession with these people! It's like their obsessed with finding every last molecule of gluten on the earth, and sitting around to talk about it. Rediculous. If you ask me, you probably have Irritable Bowel, and you're following this crazy gluten thing for no reason. So let's go ahead and have you return to gluten, and we'll do a biopsy in 2 weeks to put your mind at ease. I have 7 colleagues in this building that will all tell you the same thing. See you in 2 weeks!"

You must live in Florida... that sounds like my experience. Doc did a colonoscopy I asked for a biospy. He [never performed] the biospy; DX'ed with IBS. They say if you get sick in Florida, where do you go? To the airport!

My darling Auntie that was on a feeding tube (her pic is blogged), she was obese. The doctors and the hospital staff botched the tests on purpose to hide the fact I demanded answers why they were poisoning her with gluten & dairy & etc. For years I fought with them about her diet and they inserted a feeding tube against Auntie's wishes. Then ultimately what was in the feeding tube was poisoning her body. I no longer trust the medical community!

Jocelyn -- Save your money, go gluten & dairy free...take it a step further...I had too, I removed a few other things and for me it wasn't the in the begining. It was 5 years after 'thinking' I'm getting better. I developed secondary allergies. Try to eliminate CORN, LEGUMES, SOY (a no-no) maybe RICE, and NIGHT SHADE VEGGIES too. Go basic. Real basic. Get the book mentioned in this thread. Also THE PAILO DIET is good to start. Do a simple diet, and slowly introuduce the foods back into your diet. If you become symptomatic you'll know whats happening. You will be able to 'read' your body.

Know there is love and support here. Forget that doc.

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I would definitely recommend reading Dr. Green's book-"celiac disease-A hidden epidemic" --- would be good for you to educate yourself for when you have dumb dr's. I am bringing mine with me to my app't on Thursday! Hope that it helps.

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I'm so sorry that you were treated so horribly :( . It appears as if this so-called expert doesn't know much (if anything) about celiac. I would find another dr asap.

Danielle

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Your doctor is misinformed. While I do not fall into the "overweight" category, I am most definitley not underweight, and I'd sure like to shed about 20lb. I have, no doubt at all, celiac disease. My doctor told me very openly that she had never had a patient test positive for celiac disease before without having any symptoms. Not that she doubted my test results, it was just a new thing for her. Luckily, I have a good dr who is willing to be educated herself on this condition.

Find a new doc. Good luck.

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Sounds like the doctor I had as well. Are you from the Binghamton area? I am fighting with his office to get the images from a capsule endoscopy that he performed. Wonder why? My advise, get a new GI.

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I just got furious reading your comments. Get a new doctor...don't waste another minute or another dollar on this ignoramus. A doctor is someone you HIRE to help you, and you can just as well FIRE him/her if he doesn't have the knowledge. The sad fact is that many many, probably most U.S. doctors are sadly ignorant about the facts of celiac disease and gluten sensitivity, and of nutritional issues in general. This doctor is of no help to you now, and will be of zero help in the future. Jettison him right away.

Call around until you find a doctor who knows some real facts about celiac disease. You will probably have to make a boatload of phone calls to find this knowledgeable doctor, by the way. Good luck, and don't give up.

By the way....why don't you email Enterolab with your doctor's pathetically ignorant comments and get a response from them. Should be interesting! ;)

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