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GlutenFreeManna

Tricked Into The Blood Test And I Need Resources!

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Well, I wish I had known about things like this when I was 18 or 19. We will wait to see how much the bill is for the celiac test. I DID sign something at the doctor's office giving my husband permission to recieve medical information about me if I'm in an accident or something like that. But I don't think it gave him permision to make medical decisions for me.

Your doctor works for you. Don't let her push you around.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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No it doesn't give him permission to agree to treatment. That is part of HIPPA. It just says that if they call your house to give the results, they can tell him. Or if he calls with a question, they could talk to him about it. When we starting writing this law 20 years ago, we intended it to be more protective of your medical info. For some reason, this is the main thing that's come out of it. Federal Gov't! :angry:

That's what I thought it was. Thanks.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Your doctor works for you. Don't let her push you around.

I know, but finding one that ACTUALLY believes they work for me is a challenge. This one actually was not very pushy. She was nicer and more attentive than many that I have dealt with over the years. She just doesn't seem to know anything about celiac testing. I will be bringing her the resources posted above to read in hopes she will educate herself. Maybe I can save some future celiac patient of hers from going through the same misunderstanding.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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I know, but finding one that ACTUALLY believes they work for me is a challenge. This one actually was not very pushy. She was nicer and more attentive than many that I have dealt with over the years. She just doesn't seem to know anything about celiac testing. I will be bringing her the resources posted above to read in hopes she will educate herself. Maybe I can save some future celiac patient of hers from going through the same misunderstanding.

If you are willing to make the effort, teaching a doctor benefits everyone. If she's willing to learn then you may be able to create the perfect doc for you.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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If I ever had a doc suggest that testing while off gluten would be worthwhile for a diagnosis, I'd literally say "well, explain that. what do the tests look for?" (doc answers) "and if I'm celiac and not eating gluten, they will show what?" (doc answers) "and if I'm not celiac and not eating gluten, they will show what?" (doc answers) presuming they get those right, I say "ok, so what is the only way for me to test positive?" I'd make them step right through the whole darn process.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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HI Glutenfreemama,

I'm really curious what your test results are going to be. I actually had positive results on my blood work after a year being gluten free. My symptoms were not very noticeable during this time, but I finally figured out that I was still getting a small amount of gluten by "gluten free" vitamins even though I was on a strict gluten free diet. After I stopped taking the vitamins my last test was lower -finally 29. Under 20 is normal. I'm due to have my bloodwork done again next month. Hopefully it will be negative. :) And I've been gluten free for 17 months. :blink:

It will be good news if your test is negative! But like you said, I would bring all your documentation about celiac testing with you to your next appointment. Some of these doctors are crazy! It's so scary that they know so little about this disease. If your doctor still fights you on your diagnosis, I would just find a new doctor. It's not your responsibility to teach your doctor about this disease. That's her job! B)

Good Luck on your next appointment! Please let us know how it goes. :)


Lisa

Infertility since 1995/Endometriosis

Hasimoto Thyroid disease 1998

Enlarged Abdominal Lymph nodes since 2003 - Stable

Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008

Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet

Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet

Celiac disease - positive upper endoscopy & Blood Test 9-2009

Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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HI Glutenfreemama,

I'm really curious what your test results are going to be. I actually had positive results on my blood work after a year being gluten free. My symptoms were not very noticeable during this time, but I finally figured out that I was still getting a small amount of gluten by "gluten free" vitamins even though I was on a strict gluten free diet. After I stopped taking the vitamins my last test was lower -finally 29. Under 20 is normal. I'm due to have my bloodwork done again next month. Hopefully it will be negative. :) And I've been gluten free for 17 months. :blink:

It will be good news if your test is negative! But like you said, I would bring all your documentation about celiac testing with you to your next appointment. Some of these doctors are crazy! It's so scary that they know so little about this disease. If your doctor still fights you on your diagnosis, I would just find a new doctor. It's not your responsibility to teach your doctor about this disease. That's her job! B)

Good Luck on your next appointment! Please let us know how it goes. :)

That's very interesting! I would be very happy to get a positive celiac test but I don't think it will happen because I have been very careful. I have checked all my vitamins and even changed lotions, shampoos, etc to gluten free. I bought all new cookware, cutting boards, etc and my home is gluten free. I take my own food pretty much everywhere and don't eat out very often. Actually if gluten were the only food I needed to avoid I probably would not be as safe as I am. Because I also have to avoid soy and I have allergies to milk, mushrooms, pork and shellfish, it's pretty hard to eat out. At most places that have gluten free menus I am lucky if there is ONE thing on it I can eat and sometimes I have to special order without cheese or something. It's too much trouble and too much risk to get to pay to sit in a restaurant eating iceberg lettuce with olive oil on it. I would much rather cook at home or bring my own snacks everywhere. :)


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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HI Glutenfreemama,

I'm really curious what your test results are going to be. I actually had positive results on my blood work after a year being gluten free. My symptoms were not very noticeable during this time, but I finally figured out that I was still getting a small amount of gluten by "gluten free" vitamins even though I was on a strict gluten free diet. After I stopped taking the vitamins my last test was lower -finally 29. Under 20 is normal. I'm due to have my bloodwork done again next month. Hopefully it will be negative. :) And I've been gluten free for 17 months. :blink:

It will be good news if your test is negative! But like you said, I would bring all your documentation about celiac testing with you to your next appointment. Some of these doctors are crazy! It's so scary that they know so little about this disease. If your doctor still fights you on your diagnosis, I would just find a new doctor. It's not your responsibility to teach your doctor about this disease. That's her job! B)

Good Luck on your next appointment! Please let us know how it goes. :)

That's very interesting! I would be very happy to get a positive celiac test but I don't think it will happen because I have been very careful. I have checked all my vitamins and even changed lotions, shampoos, etc to gluten free. I bought all new cookware, cutting boards, etc and my home is gluten free. I take my own food pretty much everywhere and don't eat out very often. Actually if gluten were the only food I needed to avoid I probably would not be as safe as I am. Because I also have to avoid soy and I have allergies to milk, mushrooms, pork and shellfish, it's pretty hard to eat out. At most places that have gluten free menus I am lucky if there is ONE thing on it I can eat and sometimes I have to special order without cheese or something. It's too much trouble and too much risk to get to pay to sit in a restaurant eating iceberg lettuce with olive oil on it. I would much rather cook at home or bring my own snacks everywhere. :)


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Update: I had a second appointment today to discuss my blood tests. My husband was not invited to come along. ;)

As it turns out she did NOT do the celiac panel testing. My husband requested it but she did not run it. She agreed with me that if I didn't want a diagnosis and my symptoms resolved gluten free then I should just keep doing what I'm doing. Success!

My thyroid tests were normal also and my vitamin levels all look good. We also think we figure dout that I was being cc'd by my husband. He had been doubting how careful he needed to be and was kissing me without brushing his teeth after eating oatmeal. I didn't know this was goign on becaus emy husband leaves for work at 3 AM and he comes to the bedroom to kiss me goodbye while I'm still asleep. About half the tiem I don't even wake up when he kisses me. So he agreed to start brushign his teeth before kissing me. We also got him his own bowls for oatmeal that he will wash by hand and then put the washcloth right in the dirty dish towel pile so it doesn't get used again. About a week after he started being more careful with the oatmeal I started to feel better. I got my energy back about a week ago and I feel great again, like I can actually think clearly now!

Thank you for the support on this board. I felt so loved by your responses ready to go to bat for me against a bully dr and husband. As it turns out my husband was just uneducated--he read the links y'all posted and then pomptly apologized to me for being a bonehead. My dr was not at all trying to go behind my back and did not test me for celiac at all. So I am happy and sticking with this new dr for now.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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What else can we nag & insult your Hub about since it worked so well? ;)

ROFLOL :rolleyes:


Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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This has been an interesting thread!!!

I'm so glad everything worked out for you!


You've cat to be kitten me right meow

Wheat Allergy-April 2010

Gluten Intolerant-April 2010

Dairy/casien intolerant-Aug 2012

Lactose intolerant- Aug 2012

Soy Intolerant-November 2012

October 2012- I learned that I am 1/2 Irish with a strong family history of Gluten Intolerance/Celiacs. I will never know If I am Celiac because I will never eat gluten again in order to test postive, it's poison and I do not ever want to feel the way I felt before implementing the gluten free diet EVER again!!!

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Oh my that's terrible! It's like he was just ordering tests to say he did them. The doctor I saw was asking me all these question like "do you have bloting, gas, diarhea, etc." Everytime my answer was "Only if I have accidental gluten." As long as I'm gluten free I don't have any celiac symptoms. Imagine that! :D

I was lucky enough to get a colonoscopy and an upper endoscopy when I had those symptoms... turns out a 4 dollar prescription would have fixed the bacterial imbalance cause by international travel... And I wouldn't have a herniated trachea and increased acid reflux.

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