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In Desperate Need Of Encouragement

Jai

By Jai
in Coping with Celiac Disease

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Jai Rookie
Jai
Posted

My title says it all. I'm new here. Have been helped a lot by reading for the pat few months and finally decided to join. Here's my too-long story. I apologize in advance. I'll make it point-form!

-March randomly fainted...followed by a week of dizzy spells

-March - June continued to have random dizzy spell, felt faint, light headed, had migraine with aura for 1st time ever, caught every cold, flu, bug going around.

June got sick. Couldn't get out of bed for 2 weeks kind of sick, loss of appetite, diarrhea, fatigue, weakness, dizziness, lost 10lbs in 1 week Bad. Went to ER, found nothing, but clued in that my mom has celiac and I had the exact same symptoms that she had before diagnosis. So, did the blood test, went home and immediately went gluten-free. Took over 2 weeks for results in which time I was very slowly but also very definitely improving. Results were "inconclusive" and I postively refuse to eat gluten to do biopsy!

Digestive symptoms improved quickly, but took all summer to get any sort of strength/energy back and get rid of brain fog. Don't work in summers and it's a good thing. No way I could have worked.

End of August started back to work (home daycare) which was extremely difficult and caused me to have anxiety/ sleeping problems. I overcame it within a few weeks realizing that I can do it!

mid Sept had a set back of abdominal pain. The Dr's guess was gastritis or ulcer caused by Advil. Took about a month to finally start seeing an improvement. Again, just when I though I was overcoming that I had a major bout of diarrhea last night like I've never had in my life! Today I'm left weak, exhausted and wondering where the light at the end of the tunnel is.

In 2 weeks I'm seeing a gastro for the 1st time in all of this! Gotta love our health care system here in Canada. Don't have colon cancer, so I'm not much of a priority...as I was actually told in emerg!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board and sorry you are having such a hard time.

You mention starting up a home daycare. Do you also the kids in the day care to consume gluten in the house? If you do that may account for your setback. We even need to be careful with stuff like Playdoh and paints for the kids as those can be an issue for us.

Eat as much whole unprocessed food as you can and be careful to avoid cross contamination and hopefully you will be feeling better soon. We can have real ups and downs for a bit. Some of us will develop other intolerances with soy and dairy being the most common. If you consume either you may want to drop them for a bit and see if that helps.

Jai Rookie
Jai
Posted
  • Author

Thanks. I initially eliminated dairy, and successfully reintroduced small amounts, although every time I have a setback I cut it out again. I also eliminated soy as it made my throat itchy when drinking soy milk....

The daycare eats a regular diet, and I believe that I am careful with their food and PlayDoh.....

Maybe last night was just a `fluke` who knows... I feel like it`s always a guessing game.

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      iron digestibility

      By glucel · Posted

      I ate sprouted buckwheat and hard boiled egg last night instead of cereal and got extra 1/2 hour sleep but more importantly feel better this morning. I do sleep in cycles that seems to rotate btwn 3 and 6 hrs but I will monitor next time I make a pot. Bwheat is a complete protein with good amounts of thiamin, magnesium, fiber and iron. High carb but much lower glycemic and much healthier than refined flour cereal.
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      iron digestibility

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      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
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