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Introducing And ?s


KnottyNykki

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KnottyNykki Rookie

Hi my name is Nychole. I am a mother of three children (4, 3, and 3 months). My oldest has had celiac all his life and has had six surgeries before we figured out what was attacking his body. When he was diagnosed we also found he is allergic to casien, chocolate, spandex, and latex. I was diagnosed after my denist suggested I get tested as well and stop eating gluten to help with my major tooth sensitivity. My daughter has been symptom free so far thank goodness. My youngest is already allergic to dairy and soy so we are thinking he might end up in the same boat as my oldest.

My main question is how do you best to explain to playmates and church children that he can not have what they have. Some of them think he is getting special treatment and started being mean about it (this is one of the reasons I want to home school). I have told them we are not trying to be mean and all that its that it will make him sick, but it has not helped.

My next question is for me. I unfortunately grew up knowing the joys and taste of baked goods and such and I have yet to be able to find a good tasting bread or pie crust, so I have honeslt just been dealing with the pain when I can't hold out any longer :face of shame:. How do you do it? How do you just turn away from all the things you have always known. I know the pain should be enough but there are times it just has not been.


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tictax707 Apprentice

Since I don't have kids I can't help with the explanations to others - but there are many on here that can help with that. I can tell you that I was diagnosed later in life so I know what you are saying about not wanting to turn away from gluten. I know this might not be what you want to hear, but you just have to take a deep breath and take the plunge. You just do it. You can do it for your son, right? Maybe you could pretend that your gut is another little child of yours - one that is helpless and you must do your best to protect it.

It's not easy but being strong about it is very good for you in the long run. You want to be able to be a good mom for your kids right? You don't want to sideline yourself & make yourself sick by needlessly by eating gluten. Also - if you quit - then maybe you can set an even better example for your kids. :) (?) Hope this helps some. You have come to the right place. There are many people here that can relate to your situation. I wish you the best!!

T.H. Community Regular

For explanations - we've had a hard time with it.

My youngest was 7 when both he and his older sister went off gluten. We were homeschooling at the time, and with all the issues that have come up, I'm happy with that choice. My kids have learned to stick up for themselves, but it's been hard. Some people simply can't believe that the issue is real unless it has happened to them, and nothing will change their mind.

We just have to make sure they do what is necessary, or take our kids somewhere that does, in the end. And to teach our kids not to take any food unless we've okay'd it first. It's harder when they are small, but as they get older, they will get used to asking first if something is safe to eat, or outright telling someone that it's not, and that they aren't allowed to eat it.

Sometimes, education can help, but it's a crapshoot.

As to avoiding gluten. Having one or two snacks that I enjoy that are gluten free has helped me. I eat those whenever I get a craving. It's not the same, but at least it's still me eating something I enjoy, nonetheless, you know?

I also put up little post-its or notes around reminding me why I'm doing this. 'I'm a better mom without gluten. don't cheat,' 'you might as well eat a bowl of broken glass. don't eat it,' that sort of thing. :-)

mushroom Proficient

Some of us have gotten over this craving by thinking of rat poison whenever we look at gluten :D because gluten is a poison to our bodies. I have reached the point where I react with revulsion whenever I see a plate of loaded gluten food, like the current iHOP commercials - I feel like puking. Gluten just doesn't interest me any more, only the avoiding it. Now that's the hard part.

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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