FUT2 gene mutation: Just saw a post... - Pernicious Anaemi...

Pernicious Anaemia Society

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FUT2 gene mutation

Rummie profile image
7 Replies

Just saw a post from a few days ago regarding FUT2. What I really need to know is how to get B12 in my daughter without the side effects. Her naturopath has suggested she take a bifidobacterium probiotic to help with absorption because it is most likely low due to the mutation. She eats a very healthy diet that includes plenty B12 and folate containing foods.

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Rummie
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fbirder profile image
fbirder

Changing your gut micro flora is highly unlikely to improve B12 absorption. I would try seeing a real doctor and finding out if injections might be needed.

naturopathicdiaries.com

Gambit62 profile image
Gambit62Administrator

Rummie, I think that you really need to take proper medical advice.

I believe the post you refer to is this one

healthunlocked.com/pasoc/po...

This is link to a recent study that showed that the FUT2 variant was actually affecting the levels of B12 bound to haptocorrin (inactive but stored in liver) rather than active B12 levels in blood - bound to holo-T and able to pass into cells for use which is what really counts if you are looking at a B12 deficiency.

healthunlocked.com/pasoc/po...

If your daughter has problems with taking oral doses of B12 then it might be worth looking at nasal delivery - there are a number of products that are easy to use though they are a bit more difficult to locate.

I would suggest that you don't try supplementing though until you have managed to get tests done.

Rummie profile image
Rummie in reply toGambit62

Thank you for your response. The naturopath's assessment seemed completely inadequate and left us with more questions than answers. We haven't been too happy with the M.D.s around here, but will keep trying.

Gambit62 profile image
Gambit62Administrator in reply toRummie

hope you find someone who does help your daughter and resolve the issues.

Sleepybunny profile image
Sleepybunny

Hi,

Some links about B12 deficiency that may be of interest.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA B12 website)

b12awareness.org/

Stichting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/weten...

More b12 info in pinned posts on this forum.

I am not medically trained.

5576 profile image
5576

Hi Rummie, I’m in U.K. and we have Annie Barr patches that deliver B12 effectively and avoid gut absorption issues. Just stick behind your ear! Annie runs a training school and can be contacted that way if you can’t find the patches for sale.

There is a doctor in the US who uses B12 injections to help children with Autism and ASD. Instead of an IM injection of B12, he administers a subcutaneous injection just under the skin into the fat between the skin and muscle. He also prefers methyl B12. I believe he injects every three days but the timing is dependant on the patient's reaction to the shot. I tried these injections myself. I had a completely different response. With IM injections of Hydroxycobalamin, I have more energy and less brain fog. With the subcutaneous injections, I did not feel well. I felt like I was having a very mild herx reaction instead of increased energy. My son has the opposite reaction as me and feels better with the subcutaneous injections. I believe my response may be due to the Methyl B12 vs. the Hydro B12. I think the Methyl B12 is too much for my system or maybe I need to up my B2 and folate. I have not yet tried subcutaneous Hydro B12. Here is his site and I believe there are videos on YouTube. drneubrander.com/

@sleepybunny thanks for the links!

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