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Tira

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Tira Newbie

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

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

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

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

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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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