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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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Old 09-12-2017, 12:12 AM   #17
sweetpeasmommy
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Default Re: A question for those who have kids with mild food sensitivities

I've been lucky with my kid, he has an actual wheat allergy besides the celiac gene and obvious intolerance. I don't know that the science would get through to him, but he's been exposed exactly once in 7 years and the belly pain was pretty memorable. He has other allergens that register the same severity that he eats on occasion because we've never seen any effect at all besides eating them too much will cause chicken skin or mild eczema. He's been really compliant for a kid that isn't generally compliant with anything unless there is a reason that makes sense *to him*.

At some point it has to be their choice. He's never felt weird about it until maybe the last year or so. It's an awkward age. He doesn't want to eat things that make him feel bad, he just wants to fit in. He's had anaphylactic episodes from cross contamination from nuts so it's a huge fear of his. He has severe anxiety. We've had to work hard to get to a place that he knows he can touch or be around and even eat some of his minor allergens after having anaphylaxis to something he isn't even allergic to.

Eating disorders are a real concern, and barring actual celiac I would err on the side of it being her choice.


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Old 09-12-2017, 12:46 PM   #18
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Default Re: A question for those who have kids with mild food sensitivities

How many days a week is the hybrid program?

My thought is that I would maintain GF at home for all dinners and breakfasts, but allow the sandwiches on a part-time basis at first...let her start the program with a "normal" lunch and keep a diary of symptoms. Let her know that she will be expected to take 1 naturally gluten-free lunch per ___(pick a reasonable amount of time)___. Assure her as she starts to complain that she can take a sandwich to the first day, but the longer the meltdown lasts, the more you'll consider rescinding the offer or shortening the time frame. Tell her that she can look at what other people are eating and request whatever yummy-looking goodness she wants that might get other people mildly jealous that she gets better food, or she can pretend that she ran out of bread, or whatever, but once a month or once a week or once every four classes, she's getting a naturally gf meal, so be ready to pick one without complaining.

After a while, when she's settled into a safe GF meal for those days, I'd try to get her to come up with a second or third choice to alternate. Then, with food diary in hand, I'd try to get her buy-in to replacing more of those sandwich meals with the GF ones. And when she starts yelling that it's not fair to change the rules, I'd tell her that I'd given her time to fit in and time to find options, but that I'm not willing for her to compromise her health over the long-term...that this was a temporary offer made out of consideration for her feelings, but not a sustainable one.

That's about the time I'd start talking about people in support groups suffering as adults Maybe sooner. And maybe with her personality, a temporary laxness might backfire. You can answer that better than I can. But my thought is that social anxiety is probably driving the resistance right now, and if symptoms are mild right now, I'd be willing to cheat a little to get her through this time period compliant rather than rebellious...getting her on more solid ground emotionally before trying to get her to buy-in for the long-term.

I don't know if that's the right strategy medically. I'm looking at it from more of a strong-willed perspective, and it may be that it's too dangerous to play that game. I'm just thinking that with her being old enough to circumnavigate you, I'd rather direct the cheating and limit it rather than try to be strict and have her blow it purposefully behind your back.
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Old 09-12-2017, 04:06 PM   #19
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Default Re: A question for those who have kids with mild food sensitivities

So much great info! Our house is GF and has been for a long time even though not everyone needs to be GF. It's easiest for me and best for everyone.
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Old 09-12-2017, 10:07 PM   #20
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Default Re: A question for those who have kids with mild food sensitivities

My dd, 11, who is allergic was addicted to wheat/junk food (when I adopted her) that was one of my first clues that she had allergies. . . It took a few weeks for her to like other food. (She doesn't like how she feels now when exposed to her allergens, so she agrees with the food restrictions -- but prays every night for God to heal her allergies -- she's seen me be healed of some significant allergies, so she has some precedent). My other dd, 8, has sensitivities and we're working to heal her gut and then reintroduce things. Not because we care about having gluten at home so much, she likes other things, but because it's hard when we're out. She was gluten free for two years, before, but we didn't do anything specifically to heal her gut then. The three of us have all done aloe vera (we found one that doesn't taste bad, almost just like water really, [but then I wonder if could really be helping as much if it doesn't taste bad ]) and she is doing ferments and/or taking okra pepsin with each meal. Both girls and I have started to take enzymes with meals because we needed help digesting carbs (the girls take tummyzymes and like them).

I guess I would let her choose what to eat at her age and situation, but I don't think I would be buying it for her. . . Is there any way you could get her on board for two months of gut healing? Or do you think that might help? (So, like pick a start date and she can add enzymes now but eat whatever she wants until that time. Then go off gluten for your set amount of time while eating some delicious foods that you've picked out together).

Younger dd and I don't like much of the "gluten free" stuff, but we do like homemade apple/banana/pumpkin breads or apple/peach cobblers with gluten free flours, "nature's bakery" fig bars, "Pamela's" cookies are really good. The girls get rice noodles that are kind of like ramen but a bit healthier. Um, does she like sweet potatoes at all? Roasted chicken with coconut flour breading and honey sauce, with french fries? Egg fried rice? Gluten free ice-cream Potato pancakes with ketchup? Nachos on (organic) corn chips?
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Old 09-13-2017, 01:12 AM   #21
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Default Re: A question for those who have kids with mild food sensitivities

I'm in the "I have no clue what I'd do or what I'm doing" camp. I'm struggling mightily w this with out 17yo.

We've been gluten free at home over a decade with very ocassion all "cheats." While we r all much much healthier, we no longer experience horrible reactions to gluten we did gaps diet for quite awhile. That and treating for candida were super important for everyone. My dd2 is also getting LDA for food allergies and that's also helped her.

I believe we still have health issues from gluten but have moved to allowing them to choose what they put in their bodies BUT I will not purchase it nor will it be served at a meal I provide.

Even this isn't working that great and we've gone so far as to tell eldest dd (17) if she doesn't minimize cheating she will begin having to purchase her own symptom control meds/supplements (she gets migraines and heartburn -- so NSAIDs, papaya). My logic is she knows it affects her and still uses it so she can pay for the instant damage to her system.

Our children's medical needs are significant so with the exception of self inflicted medical issues (like too much gluten or sugar, we will continue to Cover their medical expenses until they are either done w college or established in a career. So, this was a big deal telling her she'd become in charge of purchasing symptom meds (I see her needing them more as she cheats.) however, I'm willing to bend and help her figure out how to avoid cheating. We've never had much gluten free junk food in the house (pre packaged items) so I'm helping her figure out if that would help or baking more would help. We've found new recipes together - we made lemon sorbet tonight when dd started craving a pastry ) I will buy and allow gf treats more even if they contain sugar ( for us, sugar is evil but less evil than gluten so "the lesser of two evils")

We make a plan together and then I ask if she wants accountability. she's improving w this plan even though I feel my frustration at her self inflicted issues. She has enough chronic and long term issues she's battling. I find myself annoyed and upset w how hard we've fought to get her healthy and to watch this.

When we've argued and I've gotten upset , I've stopped, calmed down, and shared my mama heart. I told her I flash back to when she was bed ridden and when she's needed acupuncture twice a week to get out of bed. I've told her that I Get panicky and scared because her regaining her health has been such a one step Forward one step back process. BUT I remind her it's her body and her mom is just having a panic attack

Honestly w my almost 12yo, I still put my foot down and tell her no or say how often she can have gluten.

I tell the kids the equivalent of 3 m&m's in an Olympic size pool is the ratio of how much gluten messes up our bodies. I won't pay for or contribute to that. but I will help them by finding out what would help them walk down a difficult Road. One thing that helps is that I'm 100% gluten free and don't cheat when they do. I've accidentally gotten gluten though.

My DH does not bring gluten into the house EVER. He's always been phenomenal about that and I'm eternally grateful.

Oh and some practical notes: we use glutenease which has been great. We get it at Walgreens.

Here are the other most powerful things that I believe have healed my D.C.
*gaps diet (although I wish we hadn't done so many ferments because we cannot tolerate them at all anymore without getting candida). It was probably broth and healthy foods and lack of sugar that helped us)
*candida treatment including pharmaceuticals (doflucan)
*grapefruit seed extract
*keepimg refined sugar to a minimum

Long term supplements:
Probiotics
digestive enzymes (we use now super enzymes)

ETA: just for reference, we do not have celiacs. We have what they have defined as "gluten sensitivity" but over the decade we can see how horribly it affects us and the affects last for months.
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Old 09-17-2017, 05:07 AM   #22
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Default Re: A question for those who have kids with mild food sensitivities

This sounds very difficult, and I will admit that I have 100% buy-in, agreement, compliance, and even appreciation from my kids. Kitten has severe allergies, and Monkey was born into an allergy-free home. Monkey has shown reactions herself, but not anaphylaxis like Kitten. Neither kid has tasted gluten.

We also talk *a lot* about nutrition and our gut heath in our home.

So, from my perspective, with the reading and research that I have done. With our experiences - I would not allow the food allergens at all.

What she has going on is a carb addiction and she has what my doctor refers to as "critters" in her gut that are controlling her brain. She is in a vicious circle. It is partly, if not fully, why she is so picky and why she is so argumentative about it. It is *extremely* difficult to fight what those "critters" do in our brains.

The problem with gluten, even a so-called "mild" reaction is that it's not just going to be a GI reaction (plus chicken skin.) It's also neurological, and that can't always be felt. I personally don't think it even matters to get a diagnosis of Celiac - though to some people, having that label makes it "click" for them that they need to not eat gluten.

It is my hypothesis (gathered from studying, and being in various online groups for food allergies, and our personal experience) that your daughter would eat a higher variety of foods, be less picky, and be less argumentative if her gut was healed. In other words, when you argue with your daughter, chances are that you are not arguing with *her,* who *she* is, but what the gluten/allergens are doing to her (and her brain.) An analogy would be arguing with a drunk person. You would be arguing with the alcohol, not the real person.

At our house, we eat GAPS. When we did this, I knew it was going to be very hard on them. So I told them that even though I have no food reactions at all, that I would do GAPS with them in solidarity. And I do. It is *hard.* But as with most things, it gets easier in time. But this does help. All meals prepared in the house are GAPS meals. DH only eats non GAPS foods outside of the house. (We all love the GAPS food - it's very good!)

I watched my very picky Monkey really open up, and she now eagerly eats and enjoys the GAPS food that I prepare. I even feel stronger and have more energy eating this way. Kitten's acne gets very clear (when she does no fruit and no honey while on GAPS.)

Sometimes, the kids talk about eating non-GAPS. We do take occasional GAPS breaks (like for our cruise, and the hurrication we took for Irma.) I watch Kitten's acne get very severe, and Monkey's anxiety/anger flares. I get bloated. They are both able to observe this.

But, we talk about the future and the kids fantasize about being able to eat junk food whenever they want. (allergy-free junk food!) I tell them this: "When you are an adult, you have to decide for yourself what you are going to put into your body. Hopefully you will know enough to make the right choices. But, while I am responsible for paying for your medical bills, you will eat what I choose for you to eat." They both think this is fair and reasonable.
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Old 09-17-2017, 10:51 AM   #23
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Default Re: A question for those who have kids with mild food sensitivities

Reading along. My middle child is just exhausting in his quest for anything except fruit,vegetables and good protein. He's six so I'm still mostly in control of his diet but it's not a cooperative,pleasant affair.
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