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Belinda Meeker

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Belinda Meeker Apprentice
Belinda Meeker
Posted

Hi, I'am not sure if my other lettter I typed went anywhere so here's another....

We have a 17 year old son who has the "C" disease and has had it all his life just found out 2 years ago why he was so sick as a little guy...when he was a baby he suffered severe hives and belly aches at first they told us it was food allergies then it was just someting that didn't agree with him.....well to make a long story short he was allergic to "LIFE" he has gotten a little better since he knows wht to eat and wht not to eat....but a year ago he tried to work at McDonalds and after not being to already eat their food didn't realize cooking it coould cause problems too, but he started having dizzy spells and passing out at work so he figured hey maybe it is getting in my skin (for those not knowing McD's uses gluten to cook with) so he quit and the passing out subsided unless he has a gluten attack from eating something he should have.....it is hard to be a teenager and not be able to eat pizza or a burger with the guys. So he now tries very hard to stick to his diet as close as he can...we also have 2 other son's one who constantly goes to the R room but he deals with it, the oldest has had several break outs which they said r chicken pox for the 3rd time (if i can i would like to show u wht he looked like when I figure out how to use site) but know we r going threw alot of testing cuz hubby and I both even tho we try very hard not to eat gluten there is HIDDEN gluten everywhere....SO everyone let me know wht u have to say and i will let know if i figure this out lol> One ? is does any one have the blisters on their feet? Thnx Bea

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kerrih Rookie
kerrih
Posted

Well, fortunately I have not had the DH rash that goes with the celiac, but I have had all of those other issues you listed. One thing I wanted to suggest is for him to have his thyroid checked out. I was almost passing out as well and my heart rate would soar and pound. Turns out this autoimmune disorder of Celiac can cause problems with other systems as well. Thyroid is a common organ to be attacked by celiac.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      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
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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
      My only proof

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      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
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      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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