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I Sure Can Pick 'em !
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4 posts in this topic

I'll try and keep this short :) I will start by saying I am totally symptom-free from celiac disease since going gluten-free seven months ago! One of the very lucky ones, and I know it. I saw my first GI after I had been gluten-free for six weeks. He was certain I had celiac disease. He didn't see a point in doing a biopsy since I was off gluten already and was not up for a challenge. After a few months, I wanted to see a doctor who was a little more experienced with celiac disease (he only had a few celiac disease patients) to do a biopsy to be sure my gut was clean, so I found a guy who claimed to be an "expert". Well, this doctor (very handsome, charming guy) said, "I will prove whether or not you have celiac disease!" Then he said that while my daughter has celiac disease, I don't because I was constipated, and celiacs are NEVER constipated, they only have diarrhea. (Check page seven of the NIH consensus. It clearly lists constipation as a symptom) Then he ran a celiac disease panel on me--AFTER I was gluten-free for SEVEN MONTHS. (Check page four of consensus--tests MUST be done while patient is eating gluten.) He said the blood tests would show whether or not I had celiac disease! HUH? Then he spoke the magic words: IBS! Do you not LOVE this story?! I told him that I know of celiacs with constipation. I told him the tests would come back negative because I was gluten-free. I told him no gluten=no symptoms. I should have told him he was a horse's hiney. But of course he's an EXPERT, you see. So I am bringing a copy of the 21-page NIH consensus to him next week (after he gets back from vacation (experts need their rest) and I am going to tell him to study it. And that I am the expert! :)

Dana, Gloriously gluten-free

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I'm sorry...but what a dork!

I wouldn't go back to that doctor. Especially after the "IBS" thing! :P

Deanna

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Oh my gosh...I'm sorry you have had to go through so much trying to get a diagnosis. You're absolutely right about constipation being a celiac disease symptom...reflux and constipation were my primary symptoms before diagnosis, never diarrhea. Out of fairness to doctors, I do have to say that it must be nearly impossible to keep up with the latest information about every single possible disease/affliction. However, I also think it's inexcusable for a doctor to ignore a patient who is trying to give him information on a disease that he obviously doesn't know much about. I hope he reads that NIH consensus statement thoroughly and starts taking your Celiac suspicions more seriously!

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The only reason I'm going back to him is to give him the NIH Consensus; he's NOT my doctor anymore! I thought it would be irresponsible for me not to give him the information he so desperately needs. What he does with it is up to him.

Dana, Gloriously gluten-free

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    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
    • I have Common variable immune deficiency (CVID) which has impaired my IgA and my IgG. I have infusions monthly for immunoglobulins. I had a blood test for celiac which showed negative however, I have nearly every celiac symptom. Everything else I have been tested for and believe me I have been tested. Kidneys, Gallbladder, emptying studies, and on and on have all been o.k.    I did go partially gluten free once a long while ago and I did feel better. I wonder if I just go gluten free if it would make a big difference. 
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