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Soarbelly

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Soarbelly Newbie

Hello i am frances from uk , i have been having real problems with my health for as long as i can remember, i have been diagnosed with chronic fatigue after all tests were clear about 6 years ago,

The last 4 years since having my 2 youngest kids has just been a constant battle with stomach pain, joint pain and extreme tiredness. In april 2012 i started having heart palpitations which are quite bothersome, i had tests and they were put down to ectopic arrythmias, i now take a beetablocker to help keep them under control, i have had bouts of low iron, hemagloban is always fine but iron stores swing up and down depending if i take supplaments, i have also had really low folic acid in the past as well as b12.

Since october last year any time i eat i get. Extreme pain in my right side it feels swollen and just agony, i have excessive wind and pain passing bowel movements. The only thing i can eat is home made soup and toast without the pain being unbearable, they removed my gall bladder as they thought that might be the culprit, unfortunately that didn't help, i had a ultrasound and colonoscopy and they were normal, i did a celiac home testing kit but that was also negative, but i honestly think it may be celiac disease. What do you think?? Ps i have been treated with every medication possible for ibs with no relief in fact the peppermint oil made symptoms worse. I would love to hear what your thoughts are, i feel so ill that even getting out my bed is a struggle! Xx


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Jen-1984 Apprentice

Have you ever been tested for lactose or casein intolerance by chance?

mushroom Proficient

Hi, and welcome to the forum.

I don't mean to cast aspersions on the NHS, but from what I understand it is pretty hard to get a full celiac panel run over there. They tend to want to do the tTG and leave it at that. But if I were you I would want the whole shebang -

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

with the possible elimination of the first two as being older and outdated. But the Deamidated Gliadin Peptide is the newest test which has replaced the first two, and is highly specific to celiac. Is there any possibility of getting these tests done?

1desperateladysaved Proficient

I sure think that with your symptoms you would want to check into it. Celiac can be helped by diet, so if you have it, you should be able to get well. I am hoping you will get some definative answers with the help you need.

Diana

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      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.  
    • trents
      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?
    • Scott Adams
      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.
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