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Coinkey

I Feel Like I'm Trying Too Extract Teeth With A Spoon While Hitting My Head Against A Brick Wall.

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So, I got my lab results back. The first walk-in doctor I saw ordered a Celiac panel, he didn't talk much but at least he listened and considered what i said. then he went on holiday and won't be back till the end of the summer. :( My results came back and they called me to go in and discuss the results. New doctor, he talks more and listens less. My results are negative for TtG but everything else is normal except ferritin and vitamin D. He says "if you feel better when you don't eat gluten then keep that up. It's not worth bothering with a biopsy at this point because most of the time tests for celiac are negative." okay, so true. Except for the fact that he tells me all of this as he is backing out of the room and walking away. Thanks dude. So, I walked out of the room with him and kept asking some questions, "so if all those test are negative, why does it hurt so much when I eat gluten? What does the slightly low ferritin level mean?" Then he says, "just keep eating gluten free, maybe the problem with gluten will go away eventually" and walks away. I walked out rather frustrated. So, yeah, I'll keep eating gluten free because I am a totally awesome person without it but it's frustrating that the doctors don't answer questions and that the tests are negative. It's all in my head then. One day I'll wake up and eat toast for breakfast and be absolutely fine, that's what the doctor seems to think. I just need someone to tell me I'm not insane, it's not all in my head and also what those ferritin and vitamin D levels are (both "low").


Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010

Suspecting soy and milk as of June 2011

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You're the opposite of insane. Sounds like you're doing a really good job of taking care of yourself, despite the obstacles. Did you know that on average it takes 9 years in the U.S. for a celiac to be diagnosed after getting symptoms? The American medical community is simply not very good at dealing with celiac - diagnosing it or treating it. I suggest reading this article focused on Dr. Peter Green who is an expert on celiac at Columbia University Medical School. He's pretty great. Here is a relevant section of the article.

Celiac disease is a master of disguise because it may strike any section of the small intestine, with each section being responsible for the absorption of different vitamins and minerals and associated with different biochemical changes in the body. Even the most diligent doctors have difficulty spotting it.

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So, I got my lab results back. The first walk-in doctor I saw ordered a Celiac panel, he didn't talk much but at least he listened and considered what i said. then he went on holiday and won't be back till the end of the summer. :( My results came back and they called me to go in and discuss the results. New doctor, he talks more and listens less. My results are negative for TtG but everything else is normal except ferritin and vitamin D. He says "if you feel better when you don't eat gluten then keep that up. It's not worth bothering with a biopsy at this point because most of the time tests for celiac are negative." okay, so true. Except for the fact that he tells me all of this as he is backing out of the room and walking away. Thanks dude. So, I walked out of the room with him and kept asking some questions, "so if all those test are negative, why does it hurt so much when I eat gluten? What does the slightly low ferritin level mean?" Then he says, "just keep eating gluten free, maybe the problem with gluten will go away eventually" and walks away. I walked out rather frustrated. So, yeah, I'll keep eating gluten free because I am a totally awesome person without it but it's frustrating that the doctors don't answer questions and that the tests are negative. It's all in my head then. One day I'll wake up and eat toast for breakfast and be absolutely fine, that's what the doctor seems to think. I just need someone to tell me I'm not insane, it's not all in my head and also what those ferritin and vitamin D levels are (both "low").

Low "ferritin" (iron) and vitamin D levels are common in Celiac disease, the iron suggests anemia. Actually low D is common in the general populace. I caught the flu last Sept and a couple of weeks later had bad reactions to bread, such as stiff joints, muscle aches, D, lethargy, brain fog, etc. I went off gluten in November, and then had the Celiac Panel in Jan. It was negative (due to gluten-free probably), as well as a panel two years ago (because of a rash like DH that is now gone after 6 month gluten-free). I had a endoscopy and biopsy that were also negative, these were probably also false negatives because there was only 1 biopsy and I was gluten-full for only 1 week. As the previous poster indicated, even GIs have poor knowledge of gluten enteropathy and they tend to dismiss symptoms as something else. Mine said I only (only!) have a 10% chance of Celiac because I am HLA-DQ8 positive. He dismissed ALL of my symptoms as due to diverticulitis (infected pockets in colon). Needless to say my colon was fine. He never gave me a diagnosis for the gluten problem. You have to do what is best for you. If gluten makes you sick, then listen to that. Doctors spend too much time believing test results and not enough listening to patients and their symptoms. Getting used to gluten-free is a huge life change. I went into a big grocery store today to see if they had frozen dinners I could buy for lunches. Strange experience wandering the aisles and knowing that there is little that I can eat without getting sick. Once you are over the grieving process and frustrations, gluten-free is a much better life change. We're eating much better than when we ate breads and processed foods. Try to find a doctor that listens to you; they are like every other profession in terms of their abilities and not.

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boy, i guess i really got off easy with my doc, then. i have been having digestive problems for years and was misdiagnosed by other doctors. i had been feeling progressively worse to the point of not eating very much because it was such a pain in the butt (lol - sry couldn't resist) i didn't even go in to complain about my intestinal issues. i have high blood pressure and had to go for my six-month check. i was down to 110 lbs (am 5'8" always been thin but my weight hung right around 125 or so. my dr. (he is a D.O. not even a GI dr.!) asked me what was going on. i said same old, same old. i have sucky guts. so he looks at the rash on my scalp and asked me exactly what happens when i eat. i said sometimes i'm ok and sometimes the meal moves through me like a freight train. he writes down "celiac disease. gluten-free diet. align" on a prescription pad and hands it to me. i said, dude. that's not happening! i am making my annual trip to nj where i am eating nothing but pizza. and drinking many beers. he just looked at me a little sideways and told me to pay attention to what i am eating/drinking when i get sick. well, whattayaknow. there it was. it took me a few months of denying it but last weekend i was really, really sick. and really, really tired of being sick. i feel 1000% better!! and pretty glad my doc is a smart guy. especially after reading on here that so many have been misdiagnosed!


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Maybe your doctor didn't know enough about the gluten intolerances to answer your questions and this was his quick escape. Find a doctor that specializes in Celiac Disease, maybe you won't feel so neglected as you did this time and he/she will feel more confident answering your questions...

Wenmin

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