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Familliar Symptoms?

dave316d

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dave316d Newbie
dave316d
Posted

Hi all,

sorry for asking what is maybe the most asked question, last few years been feeling very tired on and off had loads of bloods done etc all ok apart from on 3 occasions low ferritin, one other occasion low folate (no cause found) had celiac screen came back negative......

hers a list of my symptoms.....

 

burning tingly hands and feet sometimes legs

fatigue/tiredness

migraine (with auras) started about same time.

anxiety / panic attacks

neck and back pain.

acid reflux but got a hiatus hernia which I take lansoprazole for

loose stools but I blame this on lansoprazole??

 

Tempted to go gluten free to see if any change.

 

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ravenwoodglass Mentor
ravenwoodglass
Posted

How long ago did you have the celiac tests done? Which ones did they do? If you post the results we can tell you if they did a complete panel or not. If the test was a few years ago then you could ask them to rerun it. 

You need to finish all celiac related testing before you start a trial of the diet. Meanwhile read as much as you can here and ask any questions needed. 

You may want to get some Sublingual B12 in the meantime. That may help the tingling you are getting and won't have any impact on celiac testing. 

nvsmom Community Regular
nvsmom
Posted

Ditto everything Ravenwoodglass said.  Get all the celiac disease tests done because each test can have a false negative rate as high as 1 in 4.  The tests you want are tTG IgA and IgG, DGP IgA and IgG, EMA IgA, total serum IgA and maybe the old AGA IgA and IgG tests. You need to be eating gluten in the 2-3 months prior to testing so don't go gluten-free unless you are sure testing is done.

 

Good luck with whatever you decide to do. And welcome to the board.  :)

dave316d Newbie
dave316d
Posted
  • Author

Blood tests done last April....Just said celiac screen on nhs form which he said was negative.

cyclinglady Grand Master
cyclinglady
Posted

You still have the right to obtain actual lab copies. I tested negative on all but one on the complete celiac panel. If my doc had just chosen just two of the most frequently ordered, I would not have been diagnosed.

You could go gluten free, but you need to be on the diet for at least six months. Personally, I needed that confirmation to be gluten free and watch for cross contamination.

I wish you well!

nvsmom Community Regular
nvsmom
Posted

As Cyclinglady said, it is a good idea to get your lab reports so you can judge if they enough was done or if they were interpreted correctly.  Many celiac screens are just the ttG IgA, and total serum IgA and that's not enough for many celiacs to be found.

 

Best wishes.

  • 3 months later...
dave316d Newbie
dave316d
Posted
  • Author

Just had a call from doctors had more bloods done and my "IGA" is high all the rest ok apparantly.....

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cyclinglady Grand Master
cyclinglady
Posted

Hey, Dave!

What exactly was "all the rest?" Did you confirm that you took the complete celiac panel (see NVSMOM's list)?

My IGA was high but only one of the DPG tests was positve. Both my TTG tests were negative and those are the used the most. If my doc had not order the complete panel, then I would still be searching for a diagnosis.

dave316d Newbie
dave316d
Posted
  • Author

hi ... Thanks for reply... said "coeliac panel" on blood form, they said antibodies negative but IGA was abnormally high

frieze Community Regular
frieze
Posted

by your use of the term "bloods" i am thinking you are in the UK?  they will have not done all the tests, you may need to get them done privately.  

nvsmom Community Regular
nvsmom
Posted

If you can, find out what tests were in that celiac panel.  In my city, the "celiac panel" consists of only the tTG IgA, total serum IgA (control test) and the EMA IgA only if the tTG IgA was high... They would have missed Cyclinglady too.

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