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Mummyto3

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Mummyto3 Contributor
Mummyto3
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

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kareng Grand Master
kareng
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Sounds like they just gave you the results of the other tests, twice.

Write down what you want to say when they call or you call for the results. Ask if they can send them to you, or email, or you can pick up a copy - whatever works for you. Write this down so you don't forget. Get a Copy even if they are positive.

Ask them to read you the name of the test, the test result (number) & the range it falls into. Like Test ABC is 220 the range for positive is >150. Write on your paper ahead of time - Test name: ____ Result: ______ Range: ____________

Do at least 5 of these lines.

Ask if any other tests were ordered but not back yet. Sometimes one page is still sitting on the doctor's desk to be read.

No matter what the results, ask what you should do next. Even if negative, insist that you are still "sick" and what is our next step.

Get a big piece of paper & write all these things down & leave a space to put the answer. IF its results from 2 of you, 2 pages. Tell the nurse to slow down (nicely) you are a bit confused with all the numbers & letters.

Good luck. The Celiac tests can take longer because not every lab can run them & some only run them once a week on Tuesday.

JenHarris Apprentice
JenHarris
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Just remember, you can have pretty much all of the outward symptoms of Coeliac (except for DH) and be gluten intolerant/sensitive. Me and my son both have symptoms and I'm going to go through my second round of testing later this year because according to my new doctor, the testing I had two months ago wasn't done right and therefore can't be deemed conclusive, so I encourage you to make sure they are doing the right testing on you. And you might see if they will do genetic testing as well.

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I assume it was in my genes for my daughter to get it, don't know if I'm right. I say it's from me because of family history of bowel problems. I rang today to check what was actually tested, thats when I found out they weren't back. I did consider asking for a copy :)

thanks for advice x

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I spoke to a dr today and she said mine and hubbys test were neg but it doesn't exclude that we don't have coeliac. My levels were 0.3 and his just over 1. She said to ask more about it when my daughter has her biopsy tomorrow. I have the symptoms so not sure now... I don't think I'd bother with a biopsy, I may just go gluten free and see if I feel any better.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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