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non celiac gluten sensitivity


mjroda

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mjroda Newbie

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

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

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

 

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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