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Tira

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Tira Newbie
Tira
Posted

Hello, my name is Tira, and I've just found this site! Is there a particular thread where we should introduce ourselves? :unsure:

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Lisa Mentor
Lisa
Posted

Hello, my name is Tira, and I've just found this site! Is there a particular thread where we should introduce ourselves? :unsure:

Hi Tira! Welcome :D

Jestgar Rising Star
Jestgar
Posted

Hello, my name is Tira, and I've just found this site! Is there a particular thread where we should introduce ourselves? :unsure:

Some people say hi in a meeting thread,others just launch in with their story, in whatever thread it fits.

Welcome to the board! :)

Tira Newbie
Tira
Posted
  • Author

TY for the welcome Lisa & Jestgar!

I'll just use this as my 'jumping-off' place then!

My name is Tira (rhyms w/ Vera) and I ended up having to self diagnose my celiac. The fun started a few years ago when I began noticing a dull ache in my mid-section. It was constant and steadily growing worse to the point where I knew something was really wrong when blood started to make an appearance in places that it shouldn't, and was accompanied by nausea. Finally I had hubby take me to the ER in May of 2010 where I was promptly admitted and had a CT done followed 4 days later by a colonoscopy(OMG!!!)

Now at this point I need to interject a bit more info.

There is myself, my younger bother(47) and my younger sister(45)we are blood sibs who were adopted into the same family(lucky I know)So we have no family medical history available to us.(sucks)

Now back in 2005 my sister was experiencing issues, which was blamed on gallstones, which she had removed in Sept of '05. After which she still said she was experiencing issues, but no one really listened. Being a busy mom of 5 whose ages ran from the teens to 2 years, she just bore the discomfort.

Then in April of 2010 unable to deal with it anymore, she had some tests done, and sadly, she was diagnosed w/ a liver cancer called cholingiocarcinoma, and she passed away Nov 2010.

So needless to say, each and every twinge of pain I feel has turned me into a hypochondriac in the worst way. We(hubby and I) are waiting for his benefits to go into affect in Dec(unless he gets laid off) He is a crane and large equiptment operator so we travel alot and change companies alot, and get laid off alot. In other words, no insurance.

Lately I have been experiencing sudden and extreme pain in the upper right portion of my midsection, and sudden stabbing pains in my mid-back and under my right shoulderblade. Did some research and it sounds like gallstones, so I am an emotional wreck. Add all this to the rest of the list of ailments (ruptured achillies tendons on both feet, pinched nerve in my left rotator cuff, and weight issues) I am terrified of what they will find when I finally DO get to a Dr.

Until then tho, I am determind to enjoy the times I am pain free, to learning how to extend those times, and to enjoying being 50, being loved and doted upon by such a loving and wonderful , patient husband.

I'm looking forward to learning much from everyone here, and maybe even being able to help a few.

*rereads* OMG, I have become long-winded! :lol::unsure::ph34r:

Christelle Newbie
Christelle
Posted

Hello Tira. Sounds like you have had a nasty time. I live in Australia and we are lucky to have free hospitals. Really lucky. I haven't had a formal diagnosis for Coeliacs disease either. I just spent five hours in the hospital today when I just couldn't stand feeling so sick for a moment longer. They ran lots of blood tests but they came up perfect. I haven't been eating much in the past week as I have been sick and definately no gluten because I know that makes me bloat so there is the negative blood test result. I am now just waiting to have a colonoscopy in the coming week or so. All I want is for someone to say "yup, you have Coeliacs" so I can start to adjust my diet more severely and get away from these monthly attacks. I was wondering if anyone else ever had worsening "attacks" of diarrhea, bloating, cramping, nausea, exhaustion etc leading up to their diagnosis? I have searched through Coeliac information and it sounds so much like how I am feeling but having the blood tests come up normal is very frustrating.

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    • Aretaeus Cappadocia
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By Aretaeus Cappadocia · Posted

      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
    • knitty kitty
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By knitty kitty · Posted

      @yellowstone, You poor thing!  I'm not a medical doctor, but it sounds like "Refeeding Syndrome".   I suggest you seek medical attention.   Refeeding Syndrome occurs when your body doesn't have enough of the necessary vitamins, especially Thiamine, to turn sugars (from the fruit, juice, and honey) to turn provide energy.   This can occur in Malabsorption due to Celiac Disease.  Malabsorption prevents the absorption of B vitamins, especially Thiamine. The B vitamins and Thiamine cannot be stored long in the body.  When you run out of Thiamine, your body burns fat for energy which produces the Ketones, hence your weight loss. With medical attention, Thiamine and other B vitamins need to be replaced before giving any more sugars.  Doctors can give you an IV containing B vitamins including Thiamine, called a "banana bag".  Riboflavin  Vitamin B2 causes the yellow color.   Doctors can also monitor your electrolytes which can become unbalanced and cause further serious health issues. I've experienced Refeeding Syndrome.  It's very scary.  Health can deteriorate quickly in Refeeding Syndrome.  It's correctable, but complicated.   I strongly urge you to get professional medical attention as soon as possible.   Our prayers are with you! https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome Thiamine Deficiency in Self-Induced Refeeding Syndrome, an Undetected and Potentially Lethal Condition https://pmc.ncbi.nlm.nih.gov/articles/PMC4295429/ Keep us posted on your progress!
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      By yellowstone · Posted

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