Advice For A Rookie - Just Started To Figure This Out

[ceej1979]

Hi – I’d appreciate some help. I realize I should see a doctor, and have booked an appointment, but my curiosity is getting the better of me.

 

To explain, I seriously think I may have had a gluten problem for over a decade.

 

The reason I haven’t done anything, or picked up on it, is because I was diagnosed with a major illness when I was 20. This, along with the medication also gave me very strong symptoms. So over the years, I’ve never been sure what was coming from the illness, what from the medication, and what was new!

I’ve just spent the last year or so trying to pin this down – but have always thought it was something to do with eating, or maybe an allergy.

 

I’ve been very moody, suspicious of people, irritable, anxious for about 7 years. But haven’t always been this way. There was a definite change – I originally put this down to medication, but it has continued after I stopped.

 

I struggle greatly with concentration. My head is always quite fuzzy and cloudy. I struggle to work, and can often go days without doing anything. It doesn’t matter how urgent the work is, or the concequences of not doing it – I just don’t have the concentration to even get started on it. Let alone finish. I have survived by storing it up until a time I feel better (usually nights or weekends) and catching up then.

So I basically struggle to do work between 9-5 but am better at night. Funnily, when I haven’t eaten in a long time.

 

I have definite digestive issues. I’m always very bloated, and feel rather sick and need of going to the toilet within 30 minutes of eating anything. And I’m usually on the toilet for around an hour when I do.

I have constant eye problems – they’re always very tired, watery, and irritated. Especially in the mornings. This persists from Saturday to around Thursday where it wears off a bit – yes, you can guess, I drink a lot of gluten filled beer on Fridays……….

 

I have tingling feet and calves quite a lot. Like almost every day.

 

I really went off eating in general about 3 years ago. I don’t stopped enjoying food, as it always made me feel bloated, and gave me digestive issues.

 

The wake-up moment, was this weekend. I have very very rarely felt well since about 2006. I just accepted feeling a bit strange. However, I felt good on Saturday.

 

I went out, and bought a sandwich – and within minutes went back to “normal”. My eyes started getting bad again, and I started getting the cloudy feeling in my brain.

 

I also ate high levels of gluten this morning, and feel terrible.

 

I’d just like a heads-up whether I’m maybe on the right track here?

 

This would actually be quite astonishing to me, as I always thought my eye problems (what annoys me the most) and my change in personality (going from being driven, happy and outgoing to a bit down, fuzzy and irritable) were just part of me now.

 

I realize some people struggle with a diet change, but the thought that I can make this all better by stopping eating Gluten is really amazing to me

[NoGlutenCooties]

Everything you described are possible Celiac and/or gluten sensitivity symptoms.  It's good you're planning on seeing a doctor because as you know, they are all potential symptoms of other ailments too.  That's what makes Celiac go undiagnosed and misdiagnosed for so long for a lot of people.  Ask your doctor for a full blood panel to check for any vitamin deficiencies and ask for the gluten antibody blood test.  And do NOT go gluten-free until after you have the test results because if the bloodtest is positive you'll need a biopsy and going gluten-free before all of the testing is done will scew the tests.

 

Oh... and when the antibody bloodtest results come back make sure to ask your doctor what your numbers are - get a copy of the results - don't just take their word for it that you're "negative".  Different labs have different cutoffs for what they consider to be positive or negative.  For example, my doctor and the lab she uses considers anything above an 11 on the ttg IGA test to be positive - others put the cutoff at 19 or higher.  My number was "only" 13 but my biopsy showed moderate to severe villi damage. 

[nvsmom]

All good advice.

 

The tests to request are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (an older and less reliable test that is thought by some to indicate celiac disease as well as non-celiac gluten intolerance)

 

Keep eating gluten until the tests are done. Good luck!

[1desperateladysaved]

You could start on a gluten free natural multi-vitamin, probiotic, digestive enzymes, and vitamin B as you wait to finish testing.  Each of these things helped me to resolve 30+ years of fog brain.

 

D