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New Celiac With Questions

KristaleeJane

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KristaleeJane Contributor
KristaleeJane
Posted

So after thinking that I would never find out why I felt like a peice of #*@! for so long

Symptoms including:

Migranines, Fatigue, stomach issues, low blood sugar, puffiness, muscle cramps and spasms, possible arthritus, never diagnosed though, acne, ichyness etc.

I had an upper GI done, came back normal, had some sort of breath test done where they look for a bacteria for ulcers, came back normal. My doctor said she would like to do some blood work on me, I didn't even know what she was testing me for. She called me 2 days later to come back as she would need to do further testing. My results were very high, normal for the antibody is 20, mine was 92, so she gave me a referal to a specialist for the biopsy, now I am just waiting.

Dying to start the gluten free diet, but waiting patiently, first you have to do consultation, and then you get your appointment for the biopsy, could be a while. In the mean time life is on hold I guess, we had plans to have a baby, but looks like that may not be possible for a while.

Does anyone know what other tests I should ask my doctor to do since my levels were so High of the anitbody. What blood work should I have done, to check my vitamin levels, and is there any other tests that I should have done for osteoperosis, since I have been have a lot of muscle pains and spasms.

Any help would be appreciated

thanks

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you have had positive blood work then you have a reaction to gluten. It is your choice whether you want to biopsy or not. The biopsies have also been know to be falsely negative. You have 22 ft of small intestine and if damage is patchy or in an area that the scope can not get to then you will have a false negative. You can also be told the test is negative when preceliac changes are present but not recognized or not yet 'full blown, villi totally destroyed, celiac.'

You should ask your doctor to do a full blood work up on all vitamin and mineral blood levels, do a CBC,a complete blood count to check for anemia and make sure they check folate and B12 levels, they can call sometimes call in the tests to avoid waiting for an appointment. Worth asking. You also should have a bone density scan, another thing that they may just call or send in an order for with your recent bloodwork.

Do be sure to try the diet, strictly even if those biopsies are negative. The blood work is really pretty diagnostic in itself when it is positive. I am sure others will be on with any tests I may have forgotten, I hope you get some relief soon.

KristaleeJane Contributor
KristaleeJane
Posted
  • Author
If you have had positive blood work then you have a reaction to gluten. It is your choice whether you want to biopsy or not. The biopsies have also been know to be falsely negative. You have 22 ft of small intestine and if damage is patchy or in an area that the scope can not get to then you will have a false negative. You can also be told the test is negative when preceliac changes are present but not recognized or not yet 'full blown, villi totally destroyed, celiac.'

You should ask your doctor to do a full blood work up on all vitamin and mineral blood levels, do a CBC,a complete blood count to check for anemia and make sure they check folate and B12 levels, they can call sometimes call in the tests to avoid waiting for an appointment. Worth asking. You also should have a bone density scan, another thing that they may just call or send in an order for with your recent bloodwork.

Do be sure to try the diet, strictly even if those biopsies are negative. The blood work is really pretty diagnostic in itself when it is positive. I am sure others will be on with any tests I may have forgotten, I hope you get some relief soon.

Thank-you so much for your responcse, I will make sure to follow up with the blood work and bone densily scan. I will definalty do a strict gluten free diet starting after the biopsy regardless of the results, considering how high my blood test came back.

Thanks again for your advise, really appreciate it

Wonka Apprentice
Wonka
Posted
Thank-you so much for your responcse, I will make sure to follow up with the blood work and bone densily scan. I will definalty do a strict gluten free diet starting after the biopsy regardless of the results, considering how high my blood test came back.

Thanks again for your advise, really appreciate it

Once I finally had the appointment with the GI specialist (took 3 months) I was in having a biopsy within a week.

MDRB Explorer
MDRB
Posted
So after thinking that I would never find out why I felt like a peice of #*@! for so long

Symptoms including:

Migranines, Fatigue, stomach issues, low blood sugar, puffiness, muscle cramps and spasms, possible arthritus, never diagnosed though, acne, ichyness etc.

I had an upper GI done, came back normal, had some sort of breath test done where they look for a bacteria for ulcers, came back normal. My doctor said she would like to do some blood work on me, I didn't even know what she was testing me for. She called me 2 days later to come back as she would need to do further testing. My results were very high, normal for the antibody is 20, mine was 92, so she gave me a referal to a specialist for the biopsy, now I am just waiting.

Dying to start the gluten free diet, but waiting patiently, first you have to do consultation, and then you get your appointment for the biopsy, could be a while. In the mean time life is on hold I guess, we had plans to have a baby, but looks like that may not be possible for a while.

Does anyone know what other tests I should ask my doctor to do since my levels were so High of the anitbody. What blood work should I have done, to check my vitamin levels, and is there any other tests that I should have done for osteoperosis, since I have been have a lot of muscle pains and spasms.

Any help would be appreciated

thanks

If you have made up your mind to get the biopsy: whatever you do, do NOT go gluten free prior to having the endoscopy! I went gluten free for six months before deciding to get tested. After seeing the gastroenterologist I was told that I needed to go back on the gluten for 4 weeks before the biopsy for it to be accurate. They were the WORST 4 weeks of my life! My body was just starting to heal and reacted quite severly to the gluten being re introduced.

Good luck :)

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