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The 3 Year Saga And A Life Time Of Symptoms

DaDarth

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DaDarth Newbie
DaDarth
Posted

Hello all,

I'm two months today into a Gluten challenge and still wondering if I should go to 3 months to ensure an accurate blood test result.

It started for me over 10 years ago when I was just out of college and feeling so run down and tired that my doctor thought I might have Mono and ended up testing me for everything including HIV. At the same time I was suffering from reoccurring mouth sores, heart palpitations and generalized joint pain. My tests showed nothing and no one could connect the dots. Fast forward to 3 years ago, I awoke in the night with horrible nausea. At the same time I was having urinary pain and generalized aches and pains with no sign of infection. Still no one connected the dots. I ended up on heart burn meds and nothing worked to treat my issue.

On the advice of a friend I went and saw a naturopath. I was desperate and faling apart. She told me to go Gluten free and in a month most of my symtoms were gone. I did cheat from time to time and never noticed a direct reaction. It always seemed to be more elusive then that. Things would manifest days later. It has been such a frustrating thing for me. I could never tell if gluten was the real cause but everyone around me told me it was. They could see the mood change and the signs even before I could. So here I sit waiting to be tested, almost hoping for a positive test so that I can go on with my new lifestyle. The mouth sores are back and the back / hip pain is there. I'm tired and foggy and have reflux.

I'm looking for my diagnosis because I have two little kids and I want to ensure that their risk is taken seriously by doctors etc.

Should I wait the extra month?

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Skylark Collaborator
Skylark
Posted

Hi and welcome to the board. You do sound like you have gluten issues. Even if you don't get a positive test, you already have a positive response to the diet which is huge.

You could see if your doctor will do TTG now, and retest in a month if it's still negative! If that's not an option I would tough it out I think.

DaDarth Newbie
DaDarth
Posted
  • Author

Hi and welcome to the board. You do sound like you have gluten issues. Even if you don't get a positive test, you already have a positive response to the diet which is huge.

You could see if your doctor will do TTG now, and retest in a month if it's still negative! If that's not an option I would tough it out I think.

Hi Skylark, Thanks for the response. I think I will tough it out an extra month. In Canada the test isn't covered and I will pay for it out of pocket. I want to maximize my chance at a positive result.

stanleymonkey Explorer
stanleymonkey
Posted

where are you in Canada? In bc It is covered, I'm stunned it's not covered elsewhere, especially as there are more Europeans out east

DaDarth Newbie
DaDarth
Posted
  • Author

where are you in Canada? In bc It is covered, I'm stunned it's not covered elsewhere, especially as there are more Europeans out east

I'm in Ontario and they charge around $120 for it. I'm looking into seeing if my insurance will pay for it. I wouldn't mind taking it now and then in a month or so if it comes back negative.

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