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Ella07 last won the day on March 4 2017

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About Ella07

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  1. Hi, I'm sorry to hear about your continued neuropathy but I can relate. I have celiac disease and I did get a lot better after eating gluten free, but the neuropathy did not go away completely until I went grain free. I had researched and found many stories of the same who had to be grain free to get completely better. Eating grain free fits the Paleo diet that is quite popular nowadays. There are many paleo recipes online and cookbooks available too. Google 'Danielle Walker' and 'against all grain' and you'll find her helpful blog and she has a few cookbooks. She had to go grain free to get better and started making new recipes. Also Kelly Smith at TheNourishingHome.com, and Elana's Pantry website are great resources for grain free with similar health story. It's a major change but it's worth it to feel better, in my opinion. Maybe you can just try going grain free for a week or two and see if it helps your neuropathy? I sincerely hope you find some relief soon.
  2. Hi Hollye, I'm sorry that you and your child, who is so young, are going through this. With you being on top of things as best as you can, maybe before long healing can come. I have not experienced the food chewing issues or drooling. There are so many different gluten symptoms and it seems no one reacts the exact same as another. But, for sure, there are similar symptoms in common with others. My case is rare and I have been a "complicated" case for the two doctors working with me. I was diagnosed as Celiac just within the last three years (...in my forties). It's been a process because my symptoms are not typical (rare for gluten to attack the autonomic nerve like my situation). With my gathered symptoms when on gluten or now whenever glutened by accident, my doctors could clearly see that gluten was attacking my autonomic nerve. The symptoms only came on when exposed to gluten. My eye dilation situation was just one more proof. I also have malabsorption which has caused very low iron and low protein in my blood. But I am healing slowly and slowly my iron and protein numbers are increasing. So, thankfully, being steadfast in your efforts to protect your child from any gluten whatsoever, will probably bring healing. You asked about gluten issues and intestines being affected... My doctor just told me this week that gluten does not normally ever cause malabsorption (like my iron and protein low levels from the intestines being affected) unless it is Celiac. But that there is gluten intolerance in people but they won't have malabsorption issues or intestinal damage. He was also talking about how the tests (blood and endoscopy) that show Celiac only show it if on gluten for a defined amount of time before the tests are done. Just my personal opinion here...I'd have a hard time putting my child back on gluten and cause the symptoms, just to get a result. If their symptoms were light ones, maybe, but not if it caused distress and/or damage to my child. I think having the solution (going gluten free) is more important than having a test result. My story is too long to lay out the whole thing but my symptoms picked up as the years rolled on. For five years before I was diagnosed as Celiac, I was having symptoms just every month or so. The symptoms were just that my bowel movements changed, from no issues to constipation (I hate these details but if it helps you or someone...) literally overnight. That, along with intense spells of near fainting every month or two, was how my symptoms were for the next five years. Then in 2014, the fainting spells increased swiftly in a matter of weeks to daily and then several times every day and night. Along with new symptoms (the autonomic nerve controls everything automatic in our bodies, like blood pressure, your heart, temperature regulation, digestion, bladder, your eyes focusing and dilating, stomach churning as it should, and more) that ended up to all being a result of my body attacking my autonomic nerve when triggered by gluten. All that to say, for five years I had just a couple symptoms of autonomic damage (which I didn't realize then as autonomic damage) with no other issues pointing to intestinal damage or anything else. Those issues showed up 5, 6, and 7 years later. So, you can have gluten problems that are from Celiac that do not show in outward symptoms that point to intestinal damage long before intestinal damage symptoms become obvious (like malabsorption). One other note that might help you to know, I had to get off all grains (wheat, corn, rice, etc.) before my symptoms subsided. I only eat food that I make from scratch myself...my doctors say my body is very sensitive to gluten and that has to be the way I live. Yes, it is a lot of work but the benefits of healing and feeling good is so very worth it. It has become a way of life for me (almost 3 years now) and, in turn, becomes easier. The easy days of eating food become a lesser memory...a good thing. Hope I answered your questions! Let me know if I can help you further. I have to commend you heartily for fighting hard for your child's health. Blessings to you!
  3. Hi Hollye, I have a similar problem with my eyes as your child. (I do have Celiac disease.) When I've been glutened, one eye dilates noticeably more than the other and lasts several days. I do not get staring spells with it though. My eye doctor had me go to an eye doctor who specializes in the neurology of the eye. He said I had autonomic nerve damage that caused the dilation problem and the autonomic nerve damage was from my body's reaction to gluten. The doctor said that it will not affect my sight but the difference in dilation may become more pronounced over time and your eye will be more sensitive to sunlight, so sunglasses is obviously more necessary for me when outside on a sunny day. I have many other symptoms when glutened that are also from my body attacking the autonomic nerve. It might be helpful to research the symptoms of damage to the autonomic nerve to see if any others fit with your daughter's symptom list. Damage to that nerve is not something to play around with (and I don't think you would but might be helpful for your mother in law to realize). I have dealt with a couple family members who thought gluten could not be doing this to me and not taking gluten seriously, but they have since completely turned their opinions around when the medical evidence was shown and now they support me adamantly. Hope that helps!