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My Doctor Has My Results

Mnicole1981

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Mnicole1981 Enthusiast
Mnicole1981
Posted

But I have to wait for her call to tell me. Will update as soon as I get the info.

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Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

She said that my lab work was normal.

saintmaybe Collaborator
saintmaybe
Posted

She said that my lab work was normal.

Get copies of all your results. I've many times had things reported as "normal" that were low normal, or even abnormal in the books of other specialists. If they give you a hard time or delay because they "lose" your request, remind them that you are legally entitled to the information. Sometimes threatening legal action is necessary. :angry:

MitziG Enthusiast
MitziG
Posted

Definitely get a copy of your labs. You want to verify which tests they did. Often you don't get exactly what you think you did!

And regardless of the lab tests, if gluten-free makes you feel better, then you have your answer. You don't need a dr to agree with that!

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

saintmaybe Collaborator
saintmaybe
Posted

I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

Unless you are going in for more testing for celiac, you can eat gluten free. There is a physiologically separate condition called non celiac gluten sensitivity. People with this disorder have the same negative physical reaction to gluten, but often don't have positive antibodies or biopsies. This is because the molecular pathways that control NCGS activate different aspects of the immune system than celiac disease. Nonetheless, the only treatment is to be strictly gluten free, although the outlook is generally much more positive. Stop eating gluten, unless you are getting biopsies taken! I know whereof I speak, because I was just diagnosed by a celiac expert with NCGS.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I have an endoscopy scheduled for Thursday morning. I had night sweats like crazy last night. If it is not Celiac, I really hope to find out soon.

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MitziG Enthusiast
MitziG
Posted

At least that is just a few more days! And you don't have to eat any gluten after Wednesday! :D sounds like you definitely are at least NCGI so regardless of the biopsy, ditch the gluten permanently!

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      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
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      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
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