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Jeanniebug

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Jeanniebug Apprentice
Jeanniebug
Posted

Hi all,

I've been lurking these boards for 3 months now but had not registered yet. I just wanted to introduce myself. As you can see by my signature line, (which I hope looks ok o: I just registered today) I've been pretty sick my whole life. I went gluten-free by "accident" back in April. I woke up one day craving salads sooo bad, I ate them for lunch and dinner for 8 days straight! By the end of the week, I was feeling better than I've EVER felt...in my life. I thought long and hard and realized I had not eaten any breads or pastas that week. I googled "bread reactions" which led me to wheat and gluten links. The rest is history.

I went to a gastro who did the blood tests. The initial were negative because I had been gluten-free for 8 weeks at the time of testing. The gene test, however, was extremely high so I do carry the gene. The endoscopy may not be accurate 3 months gluten-free so my doc and I have not decided on that yet. However, he is treating me like Celiac's because my symptoms are so severe. I've been "glutened" by accident 4 times since April and it was not pretty. :wacko: I still have alot of healing to do, but life is soooo much better gluten-free. If I eat it my ulcers go crazy, my ankles and hands swell, stomach swells like I'm pregnant, major fatigue, joint aches, migraines, foggy-brained to where I can't drive...like so many the reaction is just hideous. Bloodwork shows my B-12 is low so I'm currently taking shots for that.

I've already switched my food, most cosmetics etc. but I'm sure I'll have lots of questions coming up! I just wanted to thank everyone on these boards because you've all helped me tremendously! I love this website! :wub:

p.s. Please be careful at Bonefish Grill. I got horribly glutened even although the waiter told the chef to mix my salad in a separate bowl. The manager informed me after I had eaten the salad the chef in error mixed it with a contaminated bowl and didn't catch it till it was too late. (I had pushed two small lumps to the side of my empty plate thinking it was hardened cheese...just to be safe...it was crouton bits! Death...ugh!) I got soooooo sick the next day. Salads at restaurants BAD!

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lizard00 Enthusiast
lizard00
Posted

YAY!! Another lurker out of the shadows!!! :ph34r:

Welcome to the site!! I love it, too! It's has been a huge source of info for me, and I hope it is for you too.

mushroom Proficient
mushroom
Posted

Yes, welcome, and glad you jumped in. No sharks in this pool :lol: :lol:

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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.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      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

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By AlwaysLearning · Posted

      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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