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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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    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
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      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
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      Help understand results

      By mamaof7 · Posted

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    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

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