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non celiac gluten sensitivity

mjroda

By mjroda
in Coping with Celiac Disease

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mjroda Newbie
mjroda
Posted

My son has 4y. at 2y even the blood analises come negative for transglutaminases he had short stature, his teeth were small, got joint pain, had anemia, low vitamin A and low vitamin d,  his speech was difficult to understand. The doctors said "well he has to eat more fat and give him spinach and red meat..." I've made that but he started to feel bad with fat...

Fortunatly foud a naturopath that made fezes analises that found disbiose and other values of bowel inflamation, his liver was a bit fat and we started an anti inflammatory diet- no gluten, no laticinios- started "dr roland candida yeast ", started probiotics, l-glutamine to seal his bowel, vitamins... in a few months he started do speak more clear, was less shy, gain weight, grew more, his joiny pain desapear, his hair grew more...

but in my mind i had to have a positive blood test, so after all this... i gave him gluten for 5 months... the blood test were still negative... in does months he lost weight, his speech was less clear, it started to grow white hair (only 2 but...) :o!  his joint pain came again... well...now we've started all over again... and this time i wont go back again 😕 

i´ve read that biopsy for gluten sensitivity its not an option because it doesnt damage your bowel...so by all this simptoms i suppose my son has celiac disease... do i really need to have an ok from a gastro doctor...? need to make a biopsy in a year or so... ? just asking... does he need this...

Greetings from Portugal

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! 

So the difficult thing about gluten sensitivity is that there are two main types: 1) celiac disease, which ~1% of the population has, and you can test for it, usually with a TTG blood test; and 2) non-celiac gluten sensitivity, which is the tricky one, because there is no current test for it, and possibly ~12% of the population has. 

To me it sounds like he has non-celiac gluten sensitivity, and you've already done the basic test for it, which is going gluten-free and seeing his symptoms improve, then going back to gluten, and seeing them come back. I would keep him gluten-free.

mjroda Newbie
mjroda
Posted
  • Author

thank you. yes i think is the best. hoping for good results again. thank you.

 

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  • Recent Activity

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      Hidden Gluten in distilled vinegar

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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