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Old 09-12-2017, 12:05 AM   #16
HadassahSukkot
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Default Re: A question for those who have kids with mild food sensitivities

Quote:
Originally Posted by Mother of Sons View Post
There is a difference between gluten intolerance and celiac.
Current gastrointerological studies are finding that celiac disease is a spectrum and gluten intolerance/sensitivity us the first sign you need to be gluten free. Anythjng beyond that means you already have gut damage that you may or may not ever recover from and will only "manage" with medical care and staying 100% gluten free.


If she is full blown celiac, she is taking her life in her hands every single time she eats gluten. With GS/GI the risks are lower (for now) but will stack up.


I get chewed out by pediatricians quite often, but we do not and will not have gluten in our home.

Not even our pets can have it. My dog's parents have the dog version of celiac so she and all her litter mates and subsequrnt litter mated have to stay gluten free. Our cat has been GF since we got her. We changed her food as soon as she came to live with us. I react even to saliva either gluten in it.

My kids have only had accidental gluten exposure. I saw one child go completely non verbal and have several potty regression and rages that lasted for three months. Twice. NEVER EVER AGAIN.

I have one child who shows no obvious reactions. But, with his other stomach issues- we are not chancing anything at all with family members diagnosed on both sides of my family, 3 individuals in my immediate family besides myself, and food issues that my husband's family refuse to have tested because they don't want a limited diet like what we have.

I'm the end it's your choice to sethe a good fxample as a parent. What she does outside your house is one thing. What you allow at home is another.

After my kids saw what the kart gluten exposure did things my eldest, they both recommended that they never want gluten contact again at bothered asked for help in telling their teachers and keeping them safe.

Legally, without a firm diagnosis (which we won't ever get due that what it takes to get a gold standard diagnosis), schools are not required to accommodate us. But the anecdotal evidence is enough that everyone has agreed to stay on board.

I cook and make the kids all their treats and breakfasts and lunches for school. What I don't make is from trusted GF companies that have no other items processed in their plants besides gluten free food. We've had schär, frei von and the edeka brand gf bread only. We don't explicitly temm/remind people our food is gf. Not a single person who has tried anything has complained. It tastes the same to them. We know a recipe has passed muster when it flies by me and the ngf people as acceptable. I don't do bread or cakes that don't taste or feel remotely like gluten containing products.

Cross contamination is the bane of my existence. I now wear a vogmask mask if in the mall or at grocery centers due to bakeries and restaurants. I also have to use it at ikea. but, it is better than being sick again.

I understand the struggle. I fought diagnosis hard. I have struggled all of my years with gut issues and was not diagnosed until I was in my 20s and have been assured I may never fully recovered due to the damage of it going so long without diagnosis, even with a strict 100% gf diet and doing gut healing protocols. this isn't to fault my parents, but the medical community we were saddled with so long.

So. That being said. You know your child. If she hasn't been diagnosed with celiac or DH Duhring, now is the time to pursue that, fight for nutritional guidance and explicit talks with how she is harming herself in the long run if she remains non compliant. No need to shame her. This is just as serious as being diagnosed as T1 diabetic.

Just my 2c

---------- Post added at 09:05 AM ---------- Previous post was at 08:47 AM ----------

I do apologize for all my spelling errors- posting on a mobile phone is hard when your hands are so big.

I did want to add that with as many people who are underinsured and underemployed - saying anything less than a gold standard diagnosis is classist and often sexist.
There are three valid modes of diagnosis, and self-diagnosis should be trusted when empirical evidence backs it up. Gold standard is a positive test and GI scope + biopsy. Silver standard is either positive blood tests or GI scope + biopsy or dermatitis herpetiformis Duhring. Bronze standard is when a doctor sees all the symptoms and comorbid conditions and says "I'm not stressing your body or mind further, this is what you have, and this is how to fix it.". Self-diagnosis is valid if the empirical evidence backs it up. I was self-diagnosed for a good 5 or 6 years before I had a doctor take my medical notes in hand and ask why I wasn't being treated like a celiac patient. I had to explain how American doctors don't have to study as much outside of their field, and how short and cursory the coverage of celiac and gluten sensitivity are each year in journals. I also explained that to manage my health, I had to take to reading GI journals to stay abreast of new findings because I couldn't trust my doctors to know what the research was due to their case loads. It was the first time I felt human in the eyes of my doctor and not some hysterical woman bound to be sent to a mental ward. We now compare notes and look at the research together when something interesting comes out. ATM, not much is happening in relation to studies as many GIs are focusing on a vaccination or pill related cure.
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