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Help please!

Tash

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Tash Newbie
Tash
Posted

Hi, 

Would really appreciate any advice - 

I've just received a negative blood test for celiac.  I was actually hoping that it would have come up positive as then I'd have an explanation for all my problems. 

For 2 + years I've struggled with bloating and tiredness.  It's now reached the point that I bloat even after water.  Multiple blood food intolerance tests have shown intolerances to gluten, dairy and a range of other foods that I now avoid.  But bloating continues unfortunately.  I'm a personal trainer but don't have the energy to train myself, and have had to cancel work recently as I'm just so tired and feel really heavy.  I initially got a anaemic blood test showing positive (two weeks ago with a private GP), but now with a new GP (NHS) the result is showing that my levels are fine.  The only result they have flagged up is that my folic acid is quite high and I should stop taking any supplements.  I don't understand how in one week my iron could go from 6.0 to fine in one week, after taking just 5 days of Feroglobin.  

About a month ago, prior to the iron test, I had burning skin on my back and face but no blisters.  I initially thought I had slipped a disc as the pain was that bad, but my physio couldn't see anything wrong. This burning comes and goes now, but I have a daily numbness and tingling in my face, hands and feet.  

I have arthritis in my hip and have always managed that (I'm 29 yrs old), but now my muscles and joints hurt all the time; like I've done a heavy workout every day, but I haven't! 

Before the blood test my GP advised me to eat gluten and I managed 5 days of gluten with every meal.  She told me 2 weeks worth but I honestly felt like I had flu (sore throat, headache) and couldn't manage it without sacrificing all of my work.  

What's my next step?? I'm scared that my GP is just going to say that nothing is wrong with me.  Do I push for another celiac test? Do I explore bacterial infections? I shouldn't have to feel like the forever! 

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Ennis-TX Grand Master
Ennis-TX
Posted
36 minutes ago, Tash said:

Hi, 

Would really appreciate any advice - 

I've just received a negative blood test for celiac.  I was actually hoping that it would have come up positive as then I'd have an explanation for all my problems. 

For 2 + years I've struggled with bloating and tiredness.  It's now reached the point that I bloat even after water.  Multiple blood food intolerance tests have shown intolerances to gluten, dairy and a range of other foods that I now avoid.  But bloating continues unfortunately.  I'm a personal trainer but don't have the energy to train myself, and have had to cancel work recently as I'm just so tired and feel really heavy.  I initially got a anaemic blood test showing positive (two weeks ago with a private GP), but now with a new GP (NHS) the result is showing that my levels are fine.  The only result they have flagged up is that my folic acid is quite high and I should stop taking any supplements.  I don't understand how in one week my iron could go from 6.0 to fine in one week, after taking just 5 days of Feroglobin.  

About a month ago, prior to the iron test, I had burning skin on my back and face but no blisters.  I initially thought I had slipped a disc as the pain was that bad, but my physio couldn't see anything wrong. This burning comes and goes now, but I have a daily numbness and tingling in my face, hands and feet.  

I have arthritis in my hip and have always managed that (I'm 29 yrs old), but now my muscles and joints hurt all the time; like I've done a heavy workout every day, but I haven't! 

Before the blood test my GP advised me to eat gluten and I managed 5 days of gluten with every meal.  She told me 2 weeks worth but I honestly felt like I had flu (sore throat, headache) and couldn't manage it without sacrificing all of my work.  

What's my next step?? I'm scared that my GP is just going to say that nothing is wrong with me.  Do I push for another celiac test? Do I explore bacterial infections? I shouldn't have to feel like the forever! 

OK were you eating gluten daily 12 weeks prior to the test? You have to be eating it daily in something we call a gluten challenge for the test to work, even then some people it does not show up on and have to get the endoscope and biopsy which might still miss it.
Open Original Shared Link
The burning skins, numbness, tingling....this is magnesium and b-vitamin deficiency which is common with this disease. If you do not have constipation I am going to recommend Doctors Best Magnesium in the powder form in a drink dose like it says. B-vitamins, you need the whole complex, Liquid Health Stress & Energy and Neurological Support tbsp each 3 times a day in a drink. These should help with symptoms for now.

Keep pushing for test in the mean time, I wish you luck with finding the issues. Also start keeping a food diary for now, show this to your doctor, should help explain symptoms and track down any other issues or sensitivities. Open Original Shared Link

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