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Blood Testing


billy

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billy Rookie

how accurate are blood tests? i just had my second negative test in two years even though i've tested myself through trial and error over the past four with textbook symptoms (i do go see my first gi doc in two weeks). has anyone else had negative bloodwork with a positive biopsy? thanks, billy


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tarnalberry Community Regular

I had mostly negative bloodwork (only a positive anti-reticulin IgG), and no biopsy - just a positive dietary challenge. Blood testing is appearing (according to some recent articles) to be less reliable than the statistics show - and this appears to be particularly true for people who don't have much damage to the villi. It's appearing (from anecdotal and other evidence) that there is a sort of "subclinical" celiac disease that is more correctly defined as gluten intolerance, without the severe intestinal damage.

Jinxy'sMom Newbie

Hi Billy. The only blood tests I had that came back as positive were the IgG and IgA. All the others were neg. I decided not to pursue a biopsy at that point because I didn't have any symptoms. Lately I have developed what I believe is DH and I'm seeing my GP Friday for a referral to the GI and I'd like to have the endoscopy done.

Guest barbara3675

Hi there----I had a negative blood test and after reading a lot about Enterolab on these message boards decided to do their most comprehensive test which included gene testing. They got back to me in less than two weeks after I sent the kit back that they had sent me and I am gluten and casein intolerant. I would not have known this if I had relied on my doctor for information. I highly recommend this kind of testing. The results come via email and are pretty comprehensive. I had already been eating gluten-free, but now am eating cf too. I have a six year old granddaughter that has celiac disease and we know it is hereditary.....and now we know where she got it from, darn. I am going to be 60 soon, I probably have had this for a long time, but just got diagnosed as I didn't have the bad gut symptoms until recently. However, I did have some of the other ones which are: migraine headaches, depression and just last winter diagnosed with fibromyalgia/which is pain all over your body in the mucles, tendons, ligaments. I feel this is all leading up to the diagnosis of gluten intolerance now/it is all linked. '

Barbara

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    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • 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?
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