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Update...and Very Scared Now!

Pandoranitemare

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Pandoranitemare Apprentice
Pandoranitemare
Posted

After suffering form symptoms for a long time, I finally spoke to my GP who decided to do the blood test for celiac following my taking a 6 week gluten challenge (as I had chosen to go gluten free for a couple of weeks about 3 weeks prior to seeing her - it was the fact that I had some improvement that made me decide to get tested).

So following a hellish 6 weeks of gluten filled meals, I had the blood test done on the 29th March.

I was told by the nurse, the results would take 4-5 days, and that they would phone if there was a problem, and if the test was clear I would not hear anything. However, if I needed confirmation I should phone the following week.

I was away visiting family, so was unable to do anything about it, and did not return until the bank holiday Friday.

When I came home had a missed call on my home phone from a withheld number, but no message (which I think may have been the doctor), as today I received a letter asking me to make an appointment to see my doctor to "discuss my results".

My stomach flipped and I started to shake...I sort of had it in my head that I would not hear anything...that the test would show nothing, and they would not pursue it...but now it seems there is something to "discuss".

Being a bank holiday weekend I can't even make the appointment until Tuesday! I am tying myself in knots about what I am going to be told.

I mean, she said she was testing for celiac, so if she wants to see me, does that mean the test is positive?... I can't think why else she would want to talk to me...

Help!! I am totally freaked out now....

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ravenwoodglass Mentor
ravenwoodglass
Posted

You stated you had some improvement during the short time you were gluten-free. You felt worse when you did the challenge. Don't be afraid of the test results. If they were positive you have your answer and can now start to heal. Even if the tests were not positive your feeling better on the diet and worse when you added gluten back in so that really gives you your answer whether the tests are positive or negative.

If you are going to persue an endo then do stay on gluten. Otherwise you can go gluten free today and start to heal.

I hope you are feeling better soon.

curlyfries Contributor
curlyfries
Posted

Lucky you on 2 counts!

One....if the test was positive, you have you're answer. No doubts, no second guessing. You know what you need to do.

Two....since she actually wants to talk to you,you may have a doctor who will be of some help, not one who gives a diagnosis and pushes you out the door.

Pandoranitemare Apprentice
Pandoranitemare
Posted
  • Author

Thanks ravenwoodglass, I definitely felt better when I cut the gluten out, even for a short time, which is why I decided to see my GP about getting tested...I am looking forward to getting off the gluten again, although I can't cut the gluten until I have seen the doctor (in case I need to have gluten in my system for any further tests).

The fact that I have been called up to see the doctor means that something has flagged up with the test results. I don't know yet what that is, or if I will need any more tests yet.

Right now though I am thinking the test must have come up positive...I can't think why else she would want to see me. As she only mentioned checking for celiac.

I know it will be good to have an answer, and good to go back to being gluten free, but part of me was not expecting an answer from the blood test. I guess I just has it in my head that the blood test would not show anything (I don't know why really..I just did, maybe because I heard a lot of blood tests come back negative even with people who are celiac). I just feel a bit shocked that I may actually have 'proof' that this is real and not just me being 'picky' with food!

kareng Grand Master
kareng
Posted

My thoughts :

The test is positive but you knew that deep inside. I knew it would be, too but wished it wasn't. She wants to discuss where to go from here. To a GI, maybe some blood tests for vitamin deficiencies. If she tested for those, she may want to discuss you taking supplements and re- testing in 6 months to make sure they are returning to normal. She may want to schedule a bone scan to see if the inability to take in calcium and vitamins has effected your bones. Maybe she is like my OB/ GYN nurse and used the time to look stuff up so she can tell you something helpful.

Or: the test is negative but she wants to explore more options. Refer you to a GI, get more blood work, etc. this is the time to mention you feel better gluten-free and could you be non- celiac gluten intolerant? That's just if you want the diagnosis on paper. You don't need a doctors permission to not eat a food.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Don't be scared of the follow up visit. At least the Dr. didn't pat you on the head, give you an RX for anti-depressants, and send you on your way.

You're getting follow up! :D

Skylark Collaborator
Skylark
Posted

I just feel a bit shocked that I may actually have 'proof' that this is real and not just me being 'picky' with food!

That sounds more exciting that scary! You have already been gluten-free so you know what it will be like. :)

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      By knitty kitty · Posted

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    • Wheatwacked
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    • Scott Adams
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      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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