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someday

Do I Need A New Doctor?

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Hello. I have been nagging my doctor for months about all of my problems and I think I might need a new one. He is a really nice guy though so I hate to just find someone in a phone book to change to. Way back in Jan, I started to lose a lot of hair. I had been sick forever of course. My doctor found out I was anemic and started injections. Long story, but now I'm diagnosed and gluten-free. My hair stopped falling out for about a month after I went gluten free and now is falling out faster than ever. I have gone back to him and asked him about it. There are other symptoms that I think are related to the celiac, but none quite as noticeable as the pile of hair every morning. He did blood tests and said I'm fine so don't worry about it.

Then my husband went in just for a regular check-up and my doctor started telling my husband that I must not be serious about the diet. (HELLO!) He also told my husband that things like budweiser are fine for me. (A point of contention between me and my husband.) Doesn't all beer have gluten? Why is he talking to my husband about my visit with him anyway? Is he allowed to do that without permission? The doctor also talks about my celiac and bloodwork when my mother goes to see him. I thought it would be good to have her doctor because she has lupus and I wanted my doctor to know about it in case I had it too. Now I'm not sure if having the same doctor is good or not!

Anyway, I'm not sure what to do now. If all my bloodwork is fine, why am I losing so much hair? I am more than a little frustrated with the doctor for all of his comments to my husband, but I really hate to have to switch doctor's since I don't know of anyone better anyway. Any ideas???

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A second opinion wouldn't hurt. See if you can find a local Celiac group that might have suggestions on a reputable dr. Hope you get feeling better soon.

Stephanie


Positive for dermatitis herpetiformis via skin biopsy and blood tests 6/21/07

Gluten free since 6/25/07

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I would ask him, to his face, why he is discussing your case with other people you have not given him permission to discuss it with. That breaks doctor/patient confidentiality.

How did he diagnose you? How long have you been gluten-free? What are your symptoms?

Budweiser is NOT okay. Budweiser does make a gluten-free beer, however, called Redbridge.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I would ask him, to his face, why he is discussing your case with other people you have not given him permission to discuss it with. That breaks doctor/patient confidentiality.

Not only is it unethical, it is illegial under federal law(HIPPA) to disclose your private info UNLESS you specifically give permission. When you ask him, tell him that you did not give him permission and you are specifically asking him under HIPPA to cease violating your privacy.

Oh, and good luck. I don't have any advice about the hair but I hope you find the cause.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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My opinion on the question you ask in the thread title: "Yes." I would advise your husband and mother to go to someone else also. If it were me, I would tell him flat out that what he has been doing is unethical and illegal.

I know it is tough to find someone else. But he doesn't even seem to know much about being gluten free (recovery can take time and beer obviously isn't gluten-free if made with barley) and his cavalier dismissal of a symptom like significant hair loss is disturbing. If he doesn't know what he's doing AND he talks about you behind your back, I see no reason to continue to see him.

I hope you can find out what is causing the hair loss and correct that. I wonder if it is due to a nutritional deficiency of some sort or another food intolerance. You aren't going to find an answer from a doctor who says you are fine & don't worry about it.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Hello. I have been nagging my doctor for months about all of my problems and I think I might need a new one. He is a really nice guy though so I hate to just find someone in a phone book to change to. Way back in Jan, I started to lose a lot of hair. I had been sick forever of course. My doctor found out I was anemic and started injections. Long story, but now I'm diagnosed and gluten-free. My hair stopped falling out for about a month after I went gluten free and now is falling out faster than ever. I have gone back to him and asked him about it. There are other symptoms that I think are related to the celiac, but none quite as noticeable as the pile of hair every morning. He did blood tests and said I'm fine so don't worry about it.

Then my husband went in just for a regular check-up and my doctor started telling my husband that I must not be serious about the diet. (HELLO!) He also told my husband that things like budweiser are fine for me. (A point of contention between me and my husband.) Doesn't all beer have gluten? Why is he talking to my husband about my visit with him anyway? Is he allowed to do that without permission? The doctor also talks about my celiac and bloodwork when my mother goes to see him. I thought it would be good to have her doctor because she has lupus and I wanted my doctor to know about it in case I had it too. Now I'm not sure if having the same doctor is good or not!

Anyway, I'm not sure what to do now. If all my bloodwork is fine, why am I losing so much hair? I am more than a little frustrated with the doctor for all of his comments to my husband, but I really hate to have to switch doctor's since I don't know of anyone better anyway. Any ideas???

Alopecia is the medical term for hair loss and it can be an autoimmune problem. If you have celiac disease, then you would be at higher risk for alopecia. It's another one of those things doctors do not connect the dots on! I would go to an immunologist and see if there is a test for it.....I'm sure there must be.

Your doctor is a jerk for discussing your medical issues with anyone, without your permission. You need to find a new one who knows what he is talking about. Also, did you know lupus is concurrent with celiac disease? It's autoimmune in nature and listed as one of the diseases that's linked to celiac disease. If your mother has lupus, she could have celiac disease.

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