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Gluten Related Neurological Conditions
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I've been reading up on the neurological effects of gluten sensitivity by some people. It appears that elevated IgG alone along with a positive HLA DQ2, DQ8 or DQ1 marker are being recommended for a gluten free diet as well by some doctors studying this aspect.

From: Gluten sensitivity as a neurological illness by M Hadjivassiliou, R A Gr

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;) i guess i am a test sample here------i had all of the gut reactions to celiacs, plus i have the numbing of the extremities--i was diagnosed as having carpel tunnel and when i complained of this sore spot in my shoulder and numbing in my toes, i was told by this same doctor that there is one muscle that runs through our bodies from out hands to our toes and all of this is connected--i did have the typical prob of waking in the night with my hands sleeping and that's when i was prescribed the hand braces and anti-inflamatories for the pain--it was later that the shoulder and numb toes came into play and this was all before i went gluten-free--i also suffered from chemical imbalances that caused me to have panic attacks, border line agoraphobia, anticipatory anxiety for which i was prescribed xanax 1st--they told me to take 4 a day and i could not hardly walk when i could stay awake, so then i took it as needed--which didnt help in daily life--later they put me on paxil--just before going gluten-free i was taking 40mg a day and was barely getting by--after gluten-free, i weaned myself off of paxil and very rarely have a panic attack now---i know all of these problems are connected to the celiacs--someday i want to have the enterolab test done, but for now, they are to costly--- ;) did i give you anything to think about B) deb
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I have had (and still have) problems like that. My hands and arms are "falling asleep" regularly and it tingles and stuff. I have problems with my muscles as well. They don't really build up. And my right eyelid hangs down, when i get tired. And before i was diagnosed, sometimes, when i was working out i had a pain shooting down my right leg, just as when you have sciatica. But then i was diagnosed and i never had it again. Though my i still hangs down sometimes, but that has become very rare now. The only thing i didn't get rid of (yet), is the tingling and falling asleep in my arms and hands.

Stef

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Yep. It'll be nice when they've gotten some medical-community acceptance of tests that can identify GI before significant damage to the intestines has been done - or in cases where it doesn't seem to be happening.

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This is a timely topic for me. I was diagnosed with Celiac in July 2003. I told my Mom, Dad, and Sister to think about getting checked since it's genetic. We thought it came from my mom's side as she and her mom have some digestive issues (diagnosed with collagnous colitis and IBS), but my Mom ended up negative on blood and endoscopy tests.

My Dad wasn't having any of the symptoms I had(which were many), so he wasn't concerned. However, he finally went in to get his soar knees checked this month. They had been bothering him for 2 years, but was avoiding the doc as the last time he had knee issues he had to have cartilage surgery. His doc didn't find anything specific to his knees, so he sent him to a neurologist, who discovered that my Dad had no feeling in his toes. A later blood test showed vitamin B12 deficiency, which can cause nerve problems. My Dad then told the doc that I had been diagnosed with Celiac. A second blood test resulted in a positive for Celiac. He's now scheduling an endoscopy with a GI doc.

Also, I had never made this connection, but the last few years I have had problems with my arms and legs getting numb a lot more frequently than they had in the past. It has not gotten worse since going gluten-free, but the problem is still there.

Interesting.

Thanks,

Mike

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I have tingling in hands and toes plus a sort of numbness on the left side of my face. I have not been diagnosed with celiac, but am using an SCD diet anyway. So far no effect on tingling, etc. Do have more energy and sleep better generally. Ruth S. Strack2004

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After 8 months I can say that the numbness and tingling in my arms and hands (pretty much my right arm and hand) hasn't decreased much if at all. HOWEVER, my sister, who isn't on a gluten-free diet and with whom I'd told about the hand problem 8 months ago (she said she has the exact same thing) just called a couple days ago because she noticed she's beginning to notice the same thing happening in her feet. I'm hoping, even though my hand still has problems, that it wont get any worse.

Stef, my father had the droopy eye lid problem, too, along with the numbness (that eventually crept to mid-thigh) and many, many other neurological manifestations that seem to corrolate to gluten neuropathy. I am so glad you and your doctors figured out what was happening to you before it was too late. One by one my father's system shut down, it was horrible and frustruting for him and for us.

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freyausa--have you ever read about sjogrens disease-i think that is how it is spelled--it may be very interesting to you--it was to me----i was diagnosed with carpel tunnel and after a few years i complained of my toes going numb and then i would get this bunch in my shoulder and i was told that the muscles in your hands and feet are all connected and the shoulder was in that path--i now believe it is neuropathy--but you should read up on this disease ;) deb

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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