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In Desperate Need Of Encouragement


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#1 Jai

 
Jai

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Posted 15 October 2011 - 08:18 AM

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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#2 ravenwoodglass

 
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Posted 15 October 2011 - 10:06 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Jai

 
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Posted 15 October 2011 - 02:15 PM

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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