Hi..I’ve been on strict gluten-free diet since my celiac diagnose in august 2021 I’ve started my strict gouten free diet in December and so have on and off situations. Before diagnose I had body ache,hand tingling,dizziness,fatigue,achy feet. I know celiac cause malnutrition. My B12 was at 173 units at diagnose time,my ferritin level was 3. I see improvement. My iron level and vitamin deficiencies got improved a little bit,still in low level of normal. I used to have light tingling in my right hand before the diagnose and B12 shots helped me a lot. I’ve never had crazy GI symptoms and those are better now. But it’s been 1 week since I developed pins and needles in my toes and fingertips. Kind of scared of brain tumor or MS. Also I do take SSRI, Lexapro,not sure if that can cause tingling as well.Does anyone else have those tingling situation while on gluten-free diet? My B12 was on 300 unit and ferritin was on 12 unit on my last blood work which was 2 months ago.
Thank you
Saba
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Saba82
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Are you still on B12 injections and at what frequency? Your B12 and folate were quite low and the symptoms you describe match the neurological symptoms of B12 deficiency. I had increasing pins and needles and tingling once I began treatment. The tingling is the nerves which were previously numb coming back to life and rebuilding. Think of it as part of the repair processand don't let it freak you out too much. I wouldn't get worried about MS or brain tumor.... everything you describe is entirely explicable by B2 deficiency alone.
Regards the gluten free diet, please see a good dietician or look into some research to make sure you are getting all required nutrients and minerals - any restrictive diet requires close attention to macro and micronutrients to make sure you are supporting your healing process as best you can.
"The studies on micronutrient levels in patients following a long-term gluten-free diet demonstrated a deficiency present in up to 30% of subjects for vitamin B12, 40% for iron, 20% for folic acid, 25% for vitamin D, and 40% for zinc in adults. Up to 3.6% of children were calcium deficient and 20% were magnesium deficient."
Like most diets, gluten-free can be very healthy but you need to take on those nutrients mentioned above, adjust your diet to consume more of them if needed and then supplement as needed if they remain subpar. Good luck!
Thank you so much. I had my last shot a year ago. I’ve started B12 1000mg per day a month ago and not taking it everyday. Same with my iron intake,not everyday just on and off. I developed ear buzzing after gf diet and taking iron supplements for a month resolved that issue. I believe I have to take high dose vitamin supplements everyday,because my diet now is mostly carbs and fats…
A year! My deficiency was more severe than yours but since I had neuro symptoms I had twice weekly shots for nearly 6 months before I backed that regime down a bit. Did you have neurological symptoms of B12 deficiency before you got the B12 shots? I see you mentioned hand tingling. Treatment where neurological symptoms are present is normally much more intensive, often every other day injections are recommended until symptoms stop improving.
I'm presuming you get B12 in your diet? (Not vegetarian or vegan?) Even so, with absorption issues from coeliac disease I would be surprised if you had not been recommended to supplement B12 at at least 1000mcg a day, following your loading doses. Thus would be needed for you to get sufficient B12 by passive absorption only.
Be aware if you get tested now that B12 supplementation will likely throw off B12 blood tests and MMA/Homocysteine, which are used as markers of B12 deficiency.
Don't use supplementation to correct a bad diet, fix the diet first then make up whats missing or low (or not absorbed well) with supplementation. No amount of supplementation can fix problems caused by a diet with too little protein, too little veg, too much sugar, lots of unfortified processed carbs etc. Fat is ok as long as its "good" fats from nuts and seeds or olive oil but I guess you didn't mean those! Keep taking the supplements you need but don't be misled that they can "fix" a bad diet, they can't.
I had tingling before B12 shots as well,overall I had maybe 4-5 shots last year and I would feel the difference right away. I’m persian so my main food is rice every single day with some stews. I do consume sugar a lot,with every tea 2-3 sugar canes. For my cooking I use only olive oil and ghee oil. I do eat chips and cookies a lot,all gluten free though. Not eating veggies and fruits everyday. My doctor said that for my age my B12 should be 600-700pg/ml,I’m 40. I think B 12 injections is much better than pills . I don’t know if I can get GF injections though. I was told that besides B12 I have to take Bcomplex as well,cause thiamine deficiency may have even worse impacts on neuro symptoms.
I would look into getting more regular injections again, see how your symptoms respond.
Its ironic that your doctor said you should have a B12 between 600 and 700. I say that not because he's wrong but because my B12 reading was 636 2 years ago and I was described as having a B12 overdose LOL. I was supplementing at the time. I was told to reduce my supplementation and my deficiency worsened over 2 years leaving many stubborn neurological symptoms I now struggle with. So I like your doctor
On the diet track...If its wholegrain rice, that might not be so bad but as you're probably aware, too much reliance on (unfortified) white rice does put you at risk for thiamine deficiency, especially if the rest of the diet is poor. You can take a B-complex to try and cover but.... why not change that up so that you're not entirely dependent on the supplementation just to get by? here are some good thiamine sources : myfooddata.com/articles/thi...
Supplementation is good to correct dietary shortfalls or absorption problems but if you know why you have a shortfall and its because of a dietary choice you don't have to make, it seems wiser in the long run to just adjust the diet and fix it that way (unless there are ethical reasons for the particular diet choice). Little or no vegetables is definitely not going to help you either and you can't replace everything you're missing out on with supplementation.... for example dietary fibre and protein as mentioned along with many other nutrients/minerals. Supplementation is not magic, I think its very important but it can't fix all the problems of a generally poor diet.
Well in US B12 normal range is 170-950 I don’t k ow why your doctor said that you are overdosed. Yes you are right about diet but It got 2 years for me to get diagnose with celiac disease and I was having absorption problem since I had damage to my villi, even though it was mild it was enough to cause severe ferritin deficiency and B 12 deficiency. I will have the repeat endoscopy in November to see if I get healed . I think my body still in need of getting vitamins as much as possible,since it’s been exhausted during those 2 years. Also I was told that it might take up to 2 years for villi to get completely healed. So I don’t think I’m absorbing nutrients as it should be yet. But will try to eat veggies and fruits more Do you have celiac as well? Why were deficient in B12?
Cause my doctor was an idiot. Basically. I even walked in at that time describing neurological symptoms such as numbness and tingling and I told them I suspected a B12 deficiency because I believed I might have been supplementing inadequately (I was). Their diagnosis of "overdose" was nonsense and their advice was life threatening - a dosage around 1/30th of the minimum B12 requirement. I'm vegan and was supplementing inadequately for a few years before that which was why I developed symptoms. Unfortunately at the time I trusted their advice and I paid the cost for that. I don't have Coeliac disease.
I'm glad to hear that you will be having a repeat endoscopy to check for healing. Many on conventional gluten free diets do not heal well, as they start to take in more than usual of the things that are used in those products to replace the wheat etc - like corn, millet, potato and rice starches - and develop a problem with those too, or it reveals that they already had a problem and just didn't know. GF products can be full of all the usual bad fats and sugars, so if you can try to make your own or be aware of how much sugar you are taking in. I am (probably) not coeliac, but gluten intolerant and still wasn't absorbing until I took especially corn out of my diet. Now I am completely grain free. The gluten damages the parietal cells, reducing your ability to produce stomach acid and intrinsic factor, hence poor absorption, especially of iron, and B12. And villi damage affects lactase, so likely dairy is an issue at least temporarily. Please ask about more B12 injections and explain symptoms, as 1000mcg tablet even daily is not enough with a deficiency - and you were clearly getting benefit from the injections. With neuropathy there may be several overlapping causes, and the sugar intake will not help your pain, believe me. Best wishes
They may not, for you, but all contain gluten of one sort or another. With coeliac/wheat it is actually gliadin, corn has zein, barley has hordein, oats, avenin. Some people react to just the usual few, others to the whole lot and many no doubt somewhere in between. Corn can cause villi damage just like wheat. Early GF diets were completely starch and grain free, except for bananas! And potato can cross react with corn, dairy can trigger a gluten reaction, lots of other bits that may be an issue to think about if you find you aren't healing as well as you hoped or expected.
Micki (Michaela) Rose has a huge book called The Gluten Plan which has been hugely helpful to me. I bought a printed copy a few years ago but you can download it for £20. I see there is a free preview available too - you register and then it is emailed to you. Lots of other free downloadable fact sheets on the site and plenty to read, not just gluten-related. All of the supplements I use come from her master list too, as corn is in so many and other fillers that some of us find problematic. purehealthshop.ecwid.com/Tr... Happy reading!
Fingers and toes tingling can be caused by each of iron, folate or b12 deficiency. Also by thyroid problems. Your symptoms sounds like mine a few years ago before I was diagnosed with an underactive thyroid. It’s all connected. Underactive thyroid and/or PA can cause your body not to absorb those vitamins and then you get the tingling and numbness. A high proportion of people with coeliac also have a thyroid autoimmune conditions. Might be worth getting checked out if you haven’t already or popping across to the thyroid uk group on here.
Are you taking vit D? This is another vitamin that can be hard to absorb. My bones ache if I miss my vit D supplements for a few days. It makes an enormous difference.
If worried about your brain and MS you should mention it to your GP but (in my non medical opinion) it’s much more likely to be vitamin deficiency related given your coeliac condition.
Thank you. I do get checked regularly for blood work,every 6 months and don’t have thyroid issues. My upper back hurts most of the time. It got much better after gf diet but started again. I also had eye check up by a good specialist and she said there is no evidence of MS and all my nerves in the back of the eye look very healthy.I’m very anxious now,can’t control negative thoughts like what if it’s something more serious?
Saba, if you have low b12 - it is not an on/off mentality with the supplementation. Nor is there a reason to guide yourself by rechecking levels. It does not work that way - unless the deficiency is due to being a vegan or vegetarian (but even they can have pernicious anemia or another reason like celiac disease). Of course celiac might be the only reason why you were deficient but did you test for pernicious anemia as well, to cross it off?
No, it isn't. Just a blood test (Intrinsic factor antibody). But unfortunately it is not that reliable - around 50,% -and some doctors don't even know that. Meaning that just because it has a negative finding that does not mean you do not have pernicious anemia.
If these tingling or pins and needles sensations coincided with starting, stopping or changing dosage of Lexapro, they are listed as a rarer side effect :
However if its been coming on for weeks, is similar to older symptoms that you had pre-B12 shots, and you haven't changed anything re the lexapro dosage, then it seems unlikely to be the lexapro.
Well pre diagnose it was my right hand only but now a year after celiac diagnose and Gf diet it’s in my extremities. And in terms of taking Lexapro I was taking that for a year ,not on regular basis,its been 2 months since I’ve started taking it on regular basis
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but I guess you didn't mean those! Keep taking the supplements you need but don't be misled that they can "fix" a bad diet, they can't.
Pins and needles after b12
Sensory Pins and Needles in head
Pins & Needles & tingling
pins and needles in hands 
Worse tingling and pins and needles after starting loading dose of B12 injections 
