Vicrob
-
Posts
28 -
Joined
-
Last visited
-
Days Won
1
Content Type
Profiles
Forums
Events
Blogs
Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Vicrob
-
Scott Adams' Story of His Diagnosis of Celiac Disease
Vicrob commented on Scott Adams's article in Diagnosis, Testing & Treatment
I’d like an add that thanks to knitty kitty I have found benfotiamine very helpful with neuropathy, but buy the right one. It isn’t cheap but it’s good. I’ve found this site so helpful. Doctors don’t know enough about vitamins and minerals. It should be part of their integral training. GPs, (general Doctors we see here in the U.K.) had never heard of gluten...- 171 comments
-
- 2
-
-
-
- celiac
- celiac disease
- (and 3 more)
-
This is interesting. I was working in an hotel preparing yummy wheat laden bfast (eating it too) when I had the liver symptoms, fatigue, itchy skin, white poo etc. Then a year later another job in U.K. led me to eat more bread and I worked Wed, Thurs, Fri each week. By Friday nite I had crippling pain back of head, spinning sensations and vomiting. It was...
-
Thank you it follows. I’m probably celiac but refused to start eating gluten to facilitate the test. My enzymes raised when I had covid for sure, but the ataxia clinic didn’t accept that. My last LFT was ok but they seem to keep on insisting it’s not related to my condition. My last blood tests also showed no gluten has passed my lips. I’m so strict now.
-
Of course I did seek medical attention, this was October 23. I saw two neurologists and had EMG nerve study back in U.K. which was negative. By the time I saw the neurologists I was in recovery - I was stuck abroad with whatever was happening to me and flew back a month afterwards. It was sort of said I’d had a virus and reaction - nothing to do with the f...
-
I’ve been taking thiamine and B complex for a few weeks now. Since the flu jab last October I’ve not been well. I think I suggested some awful attack on my nervous system. It affected my speech and swallowing and I couldn’t walk. I couldn’t be tested for celiac as I’d come off gluten, realising myself that I had issues. I’m now struggling with electric pi...
-
Thank you I’m taking thiamine benotiamine daily and am much better. But my neurologist tells me my elevated liver enzymes have nothing to do with my gluten ataxia. My latest blood test showed my enzymes as ok but periodically they seem to elevate. I’ve noted it’s when I’m unwell. Also after a mild attack of my central nervous system (like guillaine barre) ...
-
It took years to realise it was gluten making me poorly but I’d cut it out my diet when I was finally tested. So, not diagnosed celiac and presume it’s gluten ataxia due to lesions on cerebellum. I’m much better yet still have mild neuropathy especially if I’m feeling unwell. I take thiamine and magnesium for it. I’ve had problems with liver enzymes but last ...
-
Hi. I must not have been concise. I had neuropathic reaction to the covid jab - and covid infection but my worse reaction was to the over 65 flu jab. It was most certainly mild guillaine Barr and could have been so much worse. I’ve never known anything like it and was abroad in a house in the mountains. I’m in recovery and hopefully once I get the correct thi...
-
Hi. I forgot to add what foods I’m eating. Eggs, butter, milk (often almond) gluten-free bread and crackers, chicken, meat, all veg, lentils, rice, potatoes, fish, gluten-free sausage, chocolate, Greek yogurt, rice pudding, all fruit and cheeses. I’m wondering about dairy and if it could be causing the post nasal drip. I don’t eat pre packaged foods or me...
-
-
Ok the correct one will be with me in 3 days. I’ll update. I do think it’s working though - the wrong one! I’ve ordered 120 x 300 mg tabs of bemfotiamine. Was pricey but I don’t mind - thank you
-
I did try to get the one you suggested but unable to source it. I’ll try on line now thanks.
-
Thank you so much and yes!!! The doc prescribed an antihistamine for the nasal drip - which has no effect and I’ve now linked the itching to around then. I’m taking daily : magnedium citrate 300 mg, vitamin B complex, thiamine monomitrate 200mg, B12 500mg, A-Z multi vits with minerals I supppse there’s a low dose of D in the multi vits but if I’...
-
Hi. An update. Although the doctor doing the EMG nerve study said he thought I was recovering from ‘a virus’ my results have come back negative. There are also no traces of gluten in my bloods. I had a call from the ataxia nurse who said my lesions on cellebrum are minimal and I shouldn’t be feeling so poorly. The thiamine had stopped the neuropathy, she ...
-
Hi. An update. Although the doctor doing the EMG nerve study said he thought I was recovering from ‘a virus’ my results have come back negative. There are also no traces of gluten in my bloods. I had a call from the ataxia nurse who said my lesions on cellebrum are minimal and I shouldn’t be feeling so poorly. The thiamine had stopped the neuropathy, she ...
-
Hi. I’ve been taking thiamine, B complex and Magnesium for 3 weeks now. I’ve been long haul to the Caribbean! I have very little neuropathy, only pings when I’m tired!!! I can’t believe it after all this time. I’m recovering from mild G.Barre and still awaiting nerve study results. My speech is almost ok and swallowing almost normal. Legs ache when I walk an...
-
I took the thiamine last night along with B complex and magnesium. My head today is very thick but I had a tooth extraction yesterday which always causes me huge stress. I took iprobrufen and paracetamol to cover the tooth pain. The main reason I’m writing is to say is my neuropathy is minimal today and tonight. I did note that you can feel worse before y...
-
Thank you. I’m wondering if there’s a link to these vaccines and ataxia/neuropathy - could it bring on a crisis? It’s currently recommended to have the flu vaccine if you have an autoimmune condition, I just know my nervous system went bonkers and I certainly won’t have a vaccine ever again.
-
Oh thank you so much. My neurologist at hospital said she had tested for everything and I wasn’t to suggest anything else! I also have had NAFLD on and off over the years. Since going gluten-free 18 months ago it’s normalised, but it reoccurred when I had covid. I will start the thiamine you recommend tomorrow. I have just bought magnesium and B12. I’m...
-
I have ataxia (lesions on cerebellum) and tested positive for 2 genes for gluten intolerance. I suffer from peripheral neuropathy and had noticed that covid jab intensified the neuropathy as it did when I had covid. I’ve been gluten-free for 18m. I recently had the over 65 flu jab. I became very ill and over 2 weeks the neuropathy crept up my legs, making m...
-
Hi I’m not sure what you are asking? An ataxia nurse spoke to me last week - she works at the ataxia centre where I was diagnosed. I suggested my vitamins could be low and she said yes, gluten ataxia patients often have low vits. I’ve been low on vit D before and felt much like this - but this time I have peripheral neuropathy.
-
Hi. I’ve been gluten-free 10 months. I have gluten ataxia. My PN had gone away but it’s back. I’ve an appt today with neurologist. My muscles are spasming and weak. My vision is blurry and I feeL like I’m fading. I’m hoping it’s vitamin deficiency. I will update after todays appt. I feel very low as I was doing so well. I haven’t been taking supplements b...
-
Non-stop Itching / Skin Crawling, No Rash
Vicrob replied to Oneloved's topic in Related Issues & Disorders
I had this insect crawling sensation for months and in the end turned out it was my liver enzymes which were raised. Years after and many bouts of raised liver enzymes and being accused by GPS of being alcoholic - and feeling awful, I’ve been diagnosed. I have gluten ataxia. My liver was getting messed up due to gluten. Your comments made me think it maybe h... -
I’ve only had a letter saying there are ‘changes’ in my cellebrum, but it’s not changed in size. So, until my appt with the neurologist in 2 weeks I don’t know much more. She says I’m referred to the ataxia clinic. I’m prepared for the ‘changes’ to be permanent but rather scared of getting any worse. Hence my strict diet. Are the UBOs bad news? Awful it’s ...
-
Thanks for that encouragement. I’ve been strict gluten-free since June 22. I’m no worse balance wise and better in that my neuropathy has gone. I seem to be having some days when I feel more off balance than others. When I’ve examined my diet associated with the off days, I cannot see any reason for it. I’m wondering if there is any other reason for this ha...
