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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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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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