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Gluten Neuropathy
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4 posts in this topic

Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

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Having been tested I am not celiac, but I have a severe intolerance to wheat and a moderate reaction to gluten/glaiden

So I am having so much trouble finding ANYONE who can relate.

When I have wheat/gluten I get the oddest symptoms 24-36 hours later.

Please tell me someone can relate!!!! Please!

  • dizzy!!!!
  • left leg just gets numbish - I present as normal but it's so aggravating
  • back ache/stiff joints
  • fatigue/no get up and go

Side vent: I went to this other natural dr. who thought it was all bogus and gave me these supplment with other sensitivites I tested positive, INCLUDING a B complex with wheat germ. Needless to say, I don't take those anymore, but it just bugs me how people just stare at me like I'm making these symptom up. Some restaraunts are so cold hearted. I was left with nothing to eat but iceberg lettuce, broccoli & onions the other day. I was nearly in tears because I didn't bring any food w/me.

One of my friends gave up gluten as she gets extremely achy and stiff from eating it, so you're not alone.

Side vent - always think with your own head about anything you ingest!

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I'm with ya, my doctor tells me im not Celiac, and does not believe I have a gluten issue yet all of my problems whent away when I whent gluten-free, casin free. Anyhow if I hapen to get CC everything comes back for about three days, the joint pain, dizziness, confusion, weakness, depression , constipation, insomnia and yes the leg problems, it feels like worms are crawling thought my leg muscles. Migraines and neck stiffness also becomes a problem. I tell people it's like having the worst flu ever for about 3 days. The confusion and lack of ambition sucks its like losing 100pts of IQ for a few days, I get nothing done, I just stare off into space for long periods of time when I should be working. So Your not alone!

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Celiac can be very hard to diagnose I had been sick for 5+ years. I didn't present with the usual symptoms so no one picked up on it. I have been scoped but the G.I. wasn't looking very hard and was looking for something SO out of the ordinary it didn't return any results. After being in and out of the hospital for much of last year I was desperate and went gluten free. It saved my life. My stomach symptoms are stomach pain and constipation. And those symptoms are the easiest ones to deal with. My doctor diagnosed me celiac because of my inability to maintain vitamin levels and off of symptoms. I get HORRIBLE brain fog, sadness, fast heart rate, and achey muscles when I have had any gluten or even have been cross contaminated. It doesn't matter what they call it, the diagnosis is the same. Have your vitamin levels been checked?

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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