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Looking for answers :(

Kimberlee170
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Kimberlee170 Newbie
Kimberlee170
Posted

Hello everyone,

First time posting on the forum as I'm now desperately seeking answers to my ill health over the last few months.

Around about November 2018, I started to lose all energy and have severe fatigue. My life had been busy and I had just opened my own business so I put it down to that. I'm a vegan as well, but have never had problems with energy before. I took myself to the docs in early january, where she said she would 'bet her house' that I was anemic before sending me for blood tests. 

The tests came back fine, I was a tiny little bit low on iron and my white blood cells were slightly off but she said nothing to be concerned about. She fobbed me off with iron tablets and told me I might be depressed.

A week later, I went back (I changed docs) and she said I looked unwell, did another blood test and my white blood cells were even more off. Apart from fatigue, i've missed a period, had a massive change in my bowels, mainly diarrhea or soft stools. Most noticeably I feel like I need to go straight after food. Not to be too graphic here, but my stools are really stinky the last few months (I mean, seriously WTF and to the point my partner has commented on it when using the bathroom afterwards) and they are ALWAYS floating and different colours (a light, pale brown mixed with darker brown) and they look like my body isn't absorbing my food properly. I've lost my appetite and I'm only eating when I feel I need to I guess. I keep waking up in the middle of the night, and the last week I've had tingling and numbness all over my body.

My sister is in the healthcare industry and she is pushing me to ask the docs about if it's celiac disease. I'm going back to my GP in two days for more tests.

Does anyone have any information or ideas?

Thank you so much for your time :) 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome, the only way to know for sure is to get tested:

http://www.cureceliacdisease.org/screening/

Keep eating  gluten until all testing is complete!  

Scott Adams Grand Master
Scott Adams
Posted

Your symptoms do seem consistent:

So the hard part, at least with some doctors, is getting them to order the blood tests. If you have trouble with this imaware (a sponsor of this site) and other companies do offer inexpensive home test options.

Kimberlee170 Newbie
Kimberlee170
Posted
  • Author

Guys, thanks so much for taking time out of your day to reply to me. I'm going to ask my doc for the test, she's super and I'm sure she will go for it. This whole thing has sure taken it's toll on me both mentally and physically the last couple of months... to be honest, I don't care if I have it or not, I just want to know what's going on :(

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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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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!
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