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Tricked Into The Blood Test And I Need Resources!

GlutenFreeManna

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Jestgar Rising Star
Jestgar
Posted

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.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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.

Jestgar Rising Star
Jestgar
Posted

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.

tarnalberry Community Regular
tarnalberry
Posted

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.

Tigercat17 Enthusiast
Tigercat17
Posted

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. :)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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. :)

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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. :)

  • 4 weeks later...
GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

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

Marilyn R Community Regular
Marilyn R
Posted

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

ROFLOL :rolleyes:

GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  • Author

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

LOL! I'll let you know if I ever have problems again! ;)

catsmeow Contributor
catsmeow
Posted

This has been an interesting thread!!!

I'm so glad everything worked out for you!

crimbles Newbie
crimbles
Posted

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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    • trents
      Eating gluten before blood test

      By trents · Posted

      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      alright thank your help! 🤍
    • Scott Adams
      Eating gluten before blood test

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
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      By Scott Adams · Posted

      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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