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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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    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

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      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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      By Trish G · Posted

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    • trents
      Is this celiac?

      By trents · Posted

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      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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