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Looking for answers :(


Kimberlee170

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Kimberlee170 Newbie

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

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

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

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
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
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