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Allergies and intolerances

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Help! Folic acid severe intolerance.

12 replies

TangledMind · 24/10/2019 05:45

Hi first post
(also sorry, I'm not pregnant but folic acid is talked about alot here and I'm desperate to see if others have the same problem).

I don't know the correct term as there's next to nothing I can find on it through researching regularly for the past year and a half so need to see if any people have had it and if they found out what it's called or if others believed them.

I have a severe intolerance to synthetic folic acid. I was prescribed folic acid after bloods came back as my foliate levels were so low. Long story short between an incompetent doctor ignoring my repeated concerns over increasing symptoms over months, being referred to neuropathy specialists and put on max dose of pregablin, still being ignored, switching doctors, suicide attempt, stopping all meds which put me into a week long withdrawal unable to eat and barely drink with fever and delirium... Slowly taking medications again one by one but not foloc acid, start to get almost 100% normal and then I stupidly take another tablet and less then 24 hours later I'm back to full blown symptoms and it takes over a month to go back to normal.

Again in short, folic acid affects my nerves in my skin. Mostly in my hands, arms, feet, face and neck and when at its worse affects all my skin. I become overstimulated by any friction/movement on my skin and when something should feel soft like stroking my dog it feels more like I'm stroking sandpaper. It's not painful but it causes me to cringe uncontrollably. It got so bad that laying still all day trying not to move whilst wearing the softest tight fitting clothes so it moves less and dulls some sensation including gloves during heatwaves in summer would have me crying because I couldn't hold my bladder any longer and needed to pee and the act of getting up, walking to the bathroom, pulling my trousers and underwear off and then gloves and then having to touch toilet roll then do all those in reverse so I can get back on my silk sheets and enduring the sensation of still touching things for the next hour made me want to end it all as I became tolerant to meds to numb me and so I got no break from the torture.

Through trial and error I figured it out and even though I had spent over 6 months symptom free it's traumatised me with alot of sensations and textures (had to throw away anything canvas, never could go back to normal cotten sheets).

I noticed my hands getting a bit more sensitive and thought it may be just I my head until I had to start wearing gloves, I was kicking myself thinking how it could have got in my system and then I remembered a thread about folic acid being added to bread like it is in cereal recently but didn't click because I've only recently started eating cereal (eating issues made me avoid certain foods for years) and had just finished a box of crunchy nut.. I check the box and what ensues is alot of swearing and death threats to boxes of cereals at my local asda... Suffice to say my OH was mildly surprised and amused at me saying when I next had money I would karate kick boxes of cereal and then pay for the damage, and then very understanding of why I was so annoyed.

So any experiences you or someone else has had is massively appreciated.
And any cereal that isn't fortified with folic acid also appreciated.

OP posts:
JoMumsnet · 25/10/2019 09:58

Hi @TangledMind, and a warm welcome to Mumsnet. Brew

Sorry to hear you're struggling with this issue - it sounds awful. We just wondered if you'd like us to move your thread over to a more relevant topic - we have a specific Allergies and Intolerances topic as well as General Health and Women's Health. Do let us know and we'll move it for you - hopefully there'll be some Mumsnetters along soon with some advice and support. Flowers

JoMumsnet · 25/10/2019 17:57

We're going to move this thread over to our Allergies and Intolerances topic now (and give it a gentle bump).

TangledMind · 26/10/2019 02:34

Thank you @JoMumsnet

OP posts:
DoYouRememberTheInnMiranda · 26/10/2019 02:54

Gosh, I agree with Jo, this sounds so hard.

No experience from me. But sympathy and another bump for you.

lorns01 · 24/11/2019 19:11

Hi @TangledMind how are you getting on with your folic acid reaction? Any diagnosis? I'm suspecting the sane thing. Having diarrhoea, vomiting, rash, fever, feeling faint. Awful experience x

TangledMind · 24/11/2019 20:50

Sadly no closer, but found a cereal that isn't fortified with folic acid. Jordan Country crisp I think it's called.

I've heard news the UK may be fortifying bread soon which sounds like a nightmare.

OP posts:
lorns01 · 25/11/2019 09:54

Nightmare! Have you noticed an improvement in your symptoms after cutting it out of your diet?

Rumboogie · 25/11/2019 10:53

Retired Dr here. Folic acid intolerance and allergy is rare, but certainly occurs. Medically if folic acid supplements are required often folinic acid is used instead. This has to be given by injection. The allergy seems to be specifically to the synthetic form of folic acid rather than the kind which normally occurs in food (which differs slightly, chemically). There may be other reasons why folic acid naturally occurring (rather than added) in food does not stimulate allergy, eg cooking, other constituents present.

lorns01 · 25/11/2019 13:00

Thank you @Rumboogie that's really helpful to know. My first reaction happened 2-3 days after starting to take it as was trying to conceive. It's a daily tablet but my body only reacts to it about once a month. Does that sound possible? Having bloods taken today and really hoping to have an answer soon. It's v frightening when it happens

Rumboogie · 25/11/2019 14:04

The infrequent reactions to a daily tablet (provided you are taking it regularly) sounds odd. Could be some added effect perhaps? I'm thinking maybe extra added folic acid in something you are not aware of, maybe. Perhaps you need a referral to an immunologist/allergy specialist, as it sounds like a difficult problem.

TangledMind · 18/12/2019 16:02

For me it is the synthetic I'm allergic to, eating veggies with folate isn't an issue for me.
Cutting it out folic acid does help me.

I'm curios if there is a term for the allergy or if doctors can specifically test for it and what the test would be called thank you.

OP posts:
Rumboogie · 18/12/2019 20:43

I don't think there is a specific term for folic acid allergy other than that.
Testing, etc was outwith my area of experience when I was working, which is why I suggested referral to an allergist or immunologist might be in order, especially as this is a rare condition and one with other potential health implications. Your GP should be able to advise.

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