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Going Round In Circle With My Dr, Can Anyone Help Me?

ninconpoop

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ninconpoop Newbie
ninconpoop
Posted

Hey there all, im a new member of this formum and i wonder if any u guys can help me as im terribly confused. I have been suffereing from fatigue a very very long time, ive been tested for iron deficiency im normal, my thyroid is also normal, and i just was getting nowhere.

Then my symptoms got worse and i got terrible stomach aches and nasty wind, and i started to wonder if it was my food that was making me ill, since i was getting nowhere with the drs i paid to have the first step intollerance test with York Laboratories in England which tells u positive or negative if you have a food intollerance.

My results came back as positive so i went to my drs and they tested my blood again for iron a full blood count and Transglutaminase antibodies and Endomysial tests as he said my symtoms were like Celiac, the bloods all came back as normal, as did the Transglutamines.

I went on an exclusion diet when waiting for the results as advised by my Dr to help the diagnosis and I felt much better, now today when i got my results I have await the endomysials and until then I have been told to eat as normal and take peppermint oil, she thinks I have IBS, how the hell do you get diagnosed correctly? I have proof im intollerant to something and they wash it off as ibs?! do i stay gluten free awaiting the results or do i eat as normal and risk feeling terrible again??

Has anyone else had issues getting diagnosed, as i could be wheat intollerant or just gluten intollerant and not coeliac, but until my results im a little confused and in the dark, and it seems im back square 1.

Any helps greatly appreciated.

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darlindeb25 Collaborator
darlindeb25
Posted

When you exhaust all testing, and you do not get a diagnosis of celiac, that does not mean you aren't gluten intolerant. They do not know how to test for gluten intolerance yet, and it's much bigger than celiac. They are only concentrating on celiac for now. gluten damages much more than just villi. gluten can attack your brain, it depletes you of vitamin and minerals, whether you have celiac, or not.

Have they tested your B12 level? A B12 level lower than 500, needs to be supplemented. Gluten depletes many of us of B12.

Once you have all the testing done you feel is necessary, then go gluten free, if you feel better, then you have your answer.

ninconpoop Newbie
ninconpoop
Posted
  • Author

thank you, he tested a full blood screen and said everything was normal, but they didnt tell me the levels, but do have confusion sometimes and say stuff i dont mean to, which my friends call my blonde moments lol! i ate a gluten containing cake last night, and today my symptoms are back, ill see what happens with my results in 2 weeks, the endo tests seem to take quite a long time to come back, its just irritating, after months trying get better you get knowhere!! but reading on this forum it seems to be rather mis-diagnosed and hard to diagnose

ang1e0251 Contributor
ang1e0251
Posted

It can be hard to dx. Testing really isn't up to par yet. If you've exhausted all the tests you want, then you can just eat gluten-free and the heck with the rest. If you feel you must have the dr's gold stamp, then you are going to have to keep going on with the testing and eating gluten. That's a very personal choice that only you can make. Either way is fine.

Keep reading here and asking questions. We're thinking of you.

ninconpoop Newbie
ninconpoop
Posted
  • Author

thanks for the help both of you, i seem to have gotten a little further in figuring things out, i contacted the lab who did my food intollerance scan and they said the test for IgG antibodies, so i am showing as having a food intollerance. So i think it looks like my Dr is testing for the wrong thing by testing celiac, as thats TGA and EMA antibodies. im getting there, you show the Dr something and he completely ignores it and tests for something else anyway!! Drs eh!

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