Hummingbird
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Posts posted by Hummingbird
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On 6/27/2018 at 9:49 PM, pikakegirl said:
Ten years gluten-free and clean tests every 6 mo. but developed neuritis about a month into the diet. Granted pre diagnosis i had muscle pain so bad for 15 yrs i was told i had fibromyalgia. That stopped and the nerve pain began as soon as gluten-free diet started. Have had slight elevated centrimere but not enough to say sclerederma. Dr found i have one MTHFR gene so taking lmethyfolate helped some of the pain. Exercise causes muscle fatigue and inflamation leading into terrible nerve pain. Mostly repetative exercise. Best if i mix it up. Liquid b12 has helped as well. Had a spinal tap and brain ct in 2009 all negative for MS but my friend with MS is concerned. Have you had a full Rheumatological work up? I am on Neurotin to function but lower dose 600mg daily. Still looking for answers too.
They checked my anti inflammatory antibodies once and said they were fine. I don't know if that constitutes a whole work up, but I do have a herniated disc, degenerative disc disease, and arthritis in my neck and I'm only in my late 30's. I hope you get answers soon too
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On 6/27/2018 at 11:09 PM, knitty kitty said:
I know this one!!! You're describing what I went through! The numbness and buzzing and not being able to tell temperatures and gabapentin making it worse!
It's malnutrition from malabsorption caused by Celiac Disease.
Have you been checked for vitamin and mineral deficiencies? I urge you to get checked. Malnutrition is so overlooked by doctors, but occurs with malabsorption diseases like Celiac.
Gluten containing foods are usually enriched with vitamins and minerals. When you start the gluten free diet, you are no longer getting those vitamins and minerals. (Gluten free copy cat versions of bread and such are not required to be enriched.) Since you've got villi damage, you won't be able to absorb nutrients well until the damage starts healing. Hence your horrible withdrawal symptoms, but feeling better a few weeks later as your villi begin to work again.
B12, thiamine, niacin, and zinc deficiencies cause neuropathy! Read this article.... Nutritional Neuropathies
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Gabapentin made it worse because it uses up your B12 stores. So does nitric oxide used in anesthesia.
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And get checked to see if you have a virus! My cold sore virus (herpes simplex virus, HSV) (like chicken pox and shingles) flares up and causes all sorts of problems! (Zinc and lysine helps.) When it flares up after a glutening, I get Bell's Palsy (numbness in my face) because HSV attacks the nerves. It attacks the nerves in my ears and I get vertigo.
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I know I've listed a lot on B12 deficiency, but remember there are other B vitamins that cause neuropathy. The eight B vitamins all work together, so all should be supplemented together. They are water soluble and can't be stored in the body for long. They need to be replenished every day. And minerals need to be balanced, too.
Do get get checked for vitamin and mineral deficiencies, if just only to rule that out and especially before you undergo surgery!
Hope this helps!
Knitty Kitty?
This is all amazing, thank you!!!!!
They have tested my levels of a lot and I was low on D and iron. My B was good, but my doc wanted me to take 1000mcg anyway to help with nerve issues. And a bone scan showed osteopenia. Maybe now that I've been on the diet so long, I should get tested again and incorporate more of these supplements into my diet. I didn't think about the gluten free items not being enriched, so I was losing out on more than I thought with my new diet. I'll see if they can check those others out too.
I just got tested for Lymes since I live in the midwest, and am waiting to hear on that. I will see if they can test for other viruses as well. Thank you so much for taking the time to reply with your story and advice. I'm looking forward to digging into all the articles!
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On 6/27/2018 at 6:29 PM, Ennis_TX said:
Go to a whole foods only diet for a bit, easy simple to digest, and keep a food diary, your probably got a new allergy, sensitivity , or intolerance. Happens to some of us after a gluten exposure, we get new food sensitivity as our bodies end up associating something else with the exposure and will temporarily in most cases have some kind of reaction to it.
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The nerve issues sound like gluten ataxia and peripheral nephropathy induced by the gluten exposure. Mine has caused spinal and brain damage. It could also be induced by B-vitmain deficiency or magnesium deficiency. Liquid Health Energy & Stress and Neurological Support 1 tbsp each 3 times a day can help with this. If you do not have constipation then try some doctors best magnesium powder in the evenings before bed.Ok, thanks. I was telling someone else I wasn't sure about the ataxia because of the descriptions, but maybe I need to look further into how that can present itself. I will definitely work on the food diary. I've recently started studying Ayurveda to help me through some of this, and that was pushing me toward a more whole diet anyway...so I guess I just need to commit and get to it! Thanks for all the help and advice.
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On 6/27/2018 at 7:49 PM, GFinDC said:
A small white spot on your brain? That sounds like gluten ataxia. Gluten ataxia can cause white spots to show up on an MRI. They call them UBO's (unidentified bright objects). People with gluten ataxia can have trouble walking and coordinating their muscles. Gluten ataxia can also be very sensitive to any gluten in the diet. So a whole foods diet is a great way to go to get over the effects.
I had read about ataxia, but I don't have uncoordinated movements usually... although there were a couple of instances a few months ago where I kind of felt weird walking --like I didn't know what I was doing, but then it went away. Just the tingling and numbness, so I didn't know if that would be the same. I'll look into into it further. Thanks for the help.
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Hi all. I'm new here even though I've poured through the forums for the last year (since being diagnosed with celiac) looking for helpful hints, similar stories, etc. It's been invaluable, and I thank you all for that. I've finally decided to join and post because my situation seems to be outside a search box entry, and I need some advice.
I'll try to make this as concise as possible:
I was diagnosed last July after going in for a blood test. I specifically asked for the test because a family member was positive and I was developing weird symptoms. The top of my left toe was numb and I was getting tingling in my face. The test came back positive. Since then, I have another test after 6 mo of gluten free diet and the test was positive but the numbers were lower. I also had an endoscopy 6 mo after being gluten free (I know I know, I should have gotten it right away, but I was scared of how invasive it is!) and it showed that things were looking good but that I had gastritis. She said I still have celiac diagnosis.
When I first went off gluten, I went through horrible withdraws for weeks. Motion sickness, fatigue, headache, irritability...it was awful. But then...after a few weeks...Oh, my heavens I felt like a superhero. Energy, clarity of mind, groundedness, happiness, no more anxiety! It was like a dream. I was like, "is this how everyone else has been living this WHOLE time????" It was wonderful. About a month later I got cross contaminated from something and things began to unravel. The glutening was enough to make me almost quit the diet. I got through it, but then started cycling through symptoms every couple of weeks - depression, anxiety, joint pain, head rushes, vertigo, heart palpitations, hypoglycemic type feelings after eating... it was weird, but I was still committed to getting through.
Flash forward to the last 6 mo. I seem to be getting all the signs of MS, but my MRI's are all clear except one small white spot they said they weren't worried about. I'm getting a follow up tomorrow to see if anything has changed. It all started on the right side of my body - Buzzing in hands, feet, arms, numbness inside my finger tips, pressure on my arms and legs like something is there, and burning and tingling in my face. Now it's crossed over to the lefyt side. I do have a herniated disc in my lower back that they're about to operate on (so much for invasiveness right?!) but it's on the wrong side from where this all started. My EEG's were normal which makes zero sense since the top of my toe is numb (I have a follow up with a new neurologist for a second opinion in a couple weeks).
Last few notes - They gave me gabopentin and it seemed to make it worse so I went off it. I have had a few instances over the years where I can't sense the correct cool temperature of water (it feels warm) with my fingers and this recently happened again. Stress seems to make the buzzing more intense.
My whole family has gone gluten free in the house since day 1, so I don't think I'm being contaminated---but even if I was, wouldn't this be getting better after going off all the gluten I had been eating instead of getting markedly worse after going completely cold turkey?
So frustrated. Going through the social issues of being gluten free was enough, but I was so ready to feel healthy. I was so excited I had an answer. And now everything is worse. Anyway... Ringing any bells? Any advice? Thanks
Neurological symptoms post gluten free diet
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It's so crazy. Before I got celiac I thought it was just an allergy to gluten. I had no idea how intense of a disease it is. I really hope you get answers soon and start to heal. Thank you for sharing with me.