Gluten and B12 deficiency

[Alilev]

Is there a link between B12 deficiency and gluten sensitivity? My neuropathy has massively improved since I started self injecting regularly but I’ve noticed it returns slightly after eating bread, pasta or other foods containing gluten. Alcohol has an effect too I think. Trying to put the pieces of the jigsaw together. I’ve been tested for Coeliac - a negative result. Any insights gratefully received.,

[yorkshiregirl4]

Hello Alivev, I am hypothyroid and have Pernicious Anaemia treated by B12 injections. I was tested for Coeliac's disease which was negative too but feel much better eating gluten free. Perhaps you too have a gluten sensitivity and my suggestion would be to listen to your body and if you feel better being gluten free then do so. There is often a link between other autoimmune conditions.

Like many of us on this site alcohol often causes issues. When anyone has challenging health issues then the obvious option is to resolve and minimise symptoms, often by trial and error. Everyone heals at a different pace and in their own time. A food diary is often helpful along with medication, vitamins and minerals diary too. One of the biggest challenges is the scarcity of doctors who understand. This website allows excellent advice and support to be shared by others who are at different stages of recovery to better health. Best wishes

[Alilev in reply to yorkshiregirl4]

Thank you. I think I definitely need to bite the bullet and go gluten free.

[ICE187 in reply to Alilev]

If you don't see an improvement after going gluten free, try cutting out high FODMAPS, especially onions and garlic.

[Sleepybunny]

Hi,

Welcome to the forum.

"I’ve been tested for Coeliac - a negative result"

Which tests for coeliac did you have?

The usual test is tTG IgA which looks for a particular antibody to gluten.

A person with coeliac disease can get a negative result in tTG IgA test if

1) they have IgA deficiency

Have you had a Total IgA test?

This checks if a person has IgA deficiency.

IgA is an immunoglobulin.

People with IgA deficiency need different tests for coeliac disease as their bodies don't make the antibodies that tTG IgA test checks for.

2) they were not eating enough gluten before blood was taken.

Did your GP ask you to eat lots of gluten in more than one meal per day for several weeks before blood was taken?

Coeliac UK article on diagnosis of coeliac disease.

coeliac.org.uk/information-...

NICE (National Institute of Health and Care Excellence) have a guideline for coeliac disease.

nice.org.uk/guidance/ng20

Have you ever been tested for PA (Pernicious Anaemia)?

I left detailed replies in this thread which may have info you will find useful.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Alilev in reply to Sleepybunny]

The test was for the anti tissue transglutaminase level. Also tested for intrinsic factor antibodies- negative. I wasn’t told to eat gluten and actually I wasn’t eating that much as I don’t eat much bread. My mum had pernicious anaemia and I asked for B12 to be tested as I had neuropathy. It came back as low. Given loading doses, then 3 monthly injection but was getting neuropathy back after 3 or 4 weeks. Managed to get GP to agree to ten weekly, but I’ve started self injecting which has made me feel much better. I am currently abroad and have deliberately been including gluten in my diet as I believe the GP is going to retest later this month. Thank you for all the info - I am trying to work out what’s going on as I know I’m not going to get much help from the NHS.

Are there other tests I should ask for?

[Sleepybunny in reply to Alilev]

Re Coeliac disease,

You don't appear to have had a Total IgA test.

My understanding is that you should have had this at same time as tTG IgA test (tissue transglutaminase IgA).

Total IgA will check if you have IgA deficiency.

If you have IgA deficiency, you will need different tests to check for coeliac.

Read link below.

coeliac.org.uk/information-...

When you have time and energy, spend a while reading NICE guideline for Coeliac disease and info on Coeliac UK website. Check to see if your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland has its own guideline on diagnosis of coeliac disease.

"Also tested for intrinsic factor antibodies- negative."

Have you asked GP if you could have Antibody Negative PA?

Might be worth writing a letter to GP with this question.

b12info.com/writing-to-your...

Include any evidence that suggests that PA is likely eg

1) Low B12 result

2) Blood relative with PA

3) Symptoms suggestive of B12 deficiency

I used list below and added other symptoms at bottom.

pernicious-anaemia-society....

4) Quotes/extracts from UK B12 documents

Flowchart below discusses Antibody Negative PA.

stichtingb12tekort.nl/engli...

Background Info in next UK document says that about 50% of people with PA get a positive result in IFA test....which means that about 50% have Antibody Negative PA.

cks.nice.org.uk/topics/anae...

I think it's worth fighting to get a PA diagnosis.

If you do get a diagnosis, make sure it's recorded in your medical notes. Some forum members have had their NHS B12 injections stopped and when they queried this, they have been told that there is no record of a PA diagnosis.

New NICE guideline uses the term AIG (autoimmune gastritis) rather than PA.

I'm wary of this as some people with PA don't have gastritis.

Try to find time to read new NICE guideline as GPs may use it to decide on treatment. I think there's too much emphasis on treating people with oral B12. There's a pinned post about this.

nice.org.uk/guidance/ng239

Try to find your ICB/Health boards B12 deficiency guidelines.

If you haven't already, consider joining PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

Lots of useful PAS leaflets eg "Helpsheet for Patient-GP Discussion

pernicious-anaemia-society....

There may be other useful links in the thread I mentioned at bottom of my other reply.

[Alilev in reply to Sleepybunny]

Thank you so much for all the info. I am a member of the PA society (and thyroid organisations) and have done quite a bit of reading, but you have given me some new areas to explore. So far I haven’t had much success with my GP hence starting to self inject in order to feel more in control of my health. I agree that a diagnosis on my records would be a good thing. I’ll see what the outcome of the next round of blood tests is and take it from there. I really appreciate your help.,

[Baklava22]

Hi Alilev,

Yes, like you I tested negative to Celiac but notice more inflammation and pain after eating gluten products. Also alcohol. It’s hard to stop but necessary for pain free living.

[ClaireWF1346]

I saw the specialist in Cambridge and was advised to cut gluten and milk - my issue is dysbosis/malabsorption of some kind (yet to be found). Also tested negative for IFAB and celiac. I've read a little and there does seem to be some link between B12 deficiency and gluten but all I know is that I feel better for cutting it out. It's not actually as bad as I imagined. I've lost some things I love like noodles and fresh pasta but there are good replacements now (unfortunately more expensive than gluten products though). You can still have rice, potatoes, GF pasta etc. I bake my own bread. I am to see a nutritionist soon so I will report back on here if anything interesting comes to light!

[Alilev in reply to ClaireWF1346]

Have you cut out other dairy products or just milk?

[ClaireWF1346 in reply to Alilev]

Just lactose (well, I only have a very small amount in things like kefir and hard cheese which are naturally very low). Although I recently did an intolerance test and it came back that I'm 80% reactive to egg white so may have to consider dropping eggs too. I never had symptoms of celiac disease, only a feeling of over-fullness after gluten which had pretty much gone now. Bloating slowly reducing too. I'm not actually sure how they'll determine what exactly it is that's stopping me absorbing B12 but I imagine it'll be a long process. I also have PCOS and I'm wondering if there's a connection there too.

[Marz]

I notice on your Bio that Hypothyroidism is mentioned. Do you have Hashimotos - auto-immune thyroid ? If so then gluten sensitivity is common resulting in malabsorption of nutrients. Izabella Wentz has an informative website and Newsletter covering Hashimotos. It is the most common thyroid issue globally - me included 🌻

[Alilev in reply to Marz]

Yes I do. I’m on a mission to try to reduce my thyroid antibodies so it looks like this is the way to go.,

[Marz in reply to Alilev]

Many of us here are also on the Thyroid UK Forum on HU. It could be worth joining. Are you optimally treated for your thyroid ? Do you obtain copies of your test results ? Low Thyroid symptoms and B12 have many things in common ! Selenium can help with reducing antibodies - albeit they do not cause symptoms.

How is your FT3 Level ? Also your VitD ? Happy to help with the jigsaw puzzle ...🌻

[Alilev in reply to Marz]

Thank you! These are all things I’m in the process of tackling. My Levothyroxine dosage has recently been increased as my TSH was raised. I do my own tests via Medichecks and suspect I might not convert well as my T3 is on the low side and has continued to decrease. I spend a couple of months a year in sunny Spain and my Vit D has so far been OK I think. I do need to make sure I’m on top of supplements. I do take Vit.B complex and selenium. Think I need to add magnesium. I’m due for a thyroid blood test later this month to check on whether the higher dose is working. I do feel well at the moment but I would really like to get the thyroid antibodies down. I’ve had tinnitus since December - not too badly but noticeable first thing in the morning and seems to be linked somehow to when I get neuropathy. Gluten maybe as self injecting B12 has really sorted most of the neuropathy which had got quite bad.,

It is difficult to know which information is correct with numerous nutritionists and functional medical practitioners seeming to be the only ones claiming to have solutions for autoimmune conditions. Thank you for your offer of help - it is very gratefully received.

[Marz in reply to Alilev]

Yes info can be confusing ! VitD is good at 100 + and sadly us Hashi's folk struggle to absorb it for some reason. Hubby and I lived in Crete for 15 years from 2004 and both tested insufficient for VitD ??

I have recently doubled my D dose as my Medichecks Test indicated a result sround 60 on a dose of 5000 iu's ?? I take the important co-factors - magnesium and VitK2-MK7.

Good Ferritin levels needed for good T4/T3 conversion. Needs to be mid-range. B Complex with Folate rather than Folic Acid may also be helpful.

I am currently T3 only. I also self inject B12 weekly. Do you take your Levo away from food and drink ?

The tinnitus could be linked to the low B12 which I have read can also be linked to the recent flu j@b !

[Alilev in reply to Marz]

Will check my Vitamin D then! I don’t know anything about VitK2MK7. I follow the Vitamin B12 protocol from a support group - folic acid to support B12 injections and BComplex- 4 months then one with no B6 for 2 months . Will check the Bcomplex but use the Thorne one they recommend. I take my Levo at least an hour before food and drink. Not had a flu jab. I’m thinking of starting again with eod B12 injections to see if it has any effect on the tinnitus- I was wary about self injecting so started with once a week - maybe should have started more frequently. Currently in Spain- back to UK this week and expecting GP to do his tests so will wait for those and probably do a Medichecks one myself as he won’t test T3. So grateful that these communities exist!

[Marz in reply to Alilev]

Yes Thorne Research is good as it contains folate rather than folic acid ! K2MK7 is suggested when taking vitD as it disperses improved calcium levels away from soft tissues (arteries) into bones and teeth.

[Orchard33]

As PA is due to the stomach being unable to absorb B12 I act on the belief that anything that helps the whole digestive system will make me feel better and that especially includes gluten which I know I can't process. Stomach and gut health is now central to my personal health protocol as, of course, is frequent B12 injections.

[EiCa]

My doctor did some kind of celiac test (biopsy?) through an endoscopy, years ago. The trouble is, he had neglected to tell me that I was supposed to eat a significant amount of gluten daily, for 3 weeks, prior to the test which I had not done. So my test came out negative, but I basically had little to no gluten in my system. (I have avoided gluten for years, but sometimes will eat something w/ trace amounts) I guess my test results weren't really accurate but I am hard-pressed to eat gluten for 3 weeks and repeat this test. Is this blood test considered accurate for celiac? I am sensitive to so many things, and I have much intestinal pain and discomfort resulting in a very limited diet. Should I try having this blood test?

[Alilev in reply to EiCa]

Sorry - you have posted this as a reply to my post. Best to repost your question as a new post.

[EiCa in reply to Alilev]

Sorry you feel it was inappropriate to post it here. I considered it general comments on celiac testing in general and thought it relevant as others reading and learning about celiac testing might need to be made aware of what happened to me…so they didn’t experience the same mistake. Often these discussions spur other related issues. My apologies. Will try not to hijack your topic or anyone else again!! Not my intention at all. I am well aware I can start my own thread. I did ask a question in there about the test you had.

[Alilev in reply to EiCa]

I didn’t think it was inappropriate at all - I was just concerned that you hadn’t had any responses maybe because your post is hidden within the thread of answers to my post. I don’t know enough about coeliac testing myself, but it sounds like it would be worth asking your doctor about it. There is information on the coeliac UK website that might be helpful. healthunlocked.com/redirect...