Hello everyone, In those awesome links that jade_s posted of Sally Pacholok, her movies mention autism. My friend has two children on the spectrum, they don't absorb nutrients in their small intestines according to their mom. But no one has ever done a B12 D test on these children. The doctors know that autistic children can't absorb nutrients like they should, yet they don't test for B12. (? shaking my head)
I was wondering, my friend wants to ask for tests, but I am not sure which ones to tell him to ask for besides MMA and B12/folate.
Any suggestions?
Thanks so much!
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EllaNore
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- Full blood count (to look at MCV, MCHC, MPV, etc)
- Serum B12
- Folate and RBC Folate
- Methylmalonic acid (can also be a urine test)
- Homocysteine
- Holotranscobalamin II (Holo-TC) [may not be available in the US]
For pernicious anemia (PA):
- Intrinsic factor antibodies (IFAB)
- Gastric parietal cell antibodies (thought not diagnostic for PA) (GPCAB)
You can also ask them to test Gastrin but it's difficult for children, because you have to fast about 10 hours and absolutely nothing in the morning but water. (Timing may be less for children, would need to confirm with the lab). Gastrin can be used to confirm low stomach acid (it will be high if acid levels are low), which could explain some malabsorption problems.
Make sure to stop any B-complex 1 week prior, especially high dose Biotin can interfere with tests.
Labcorp has a PA cascade test but they will only run MMA, sntibodies if other values are low. So you should request the doctor to run all of them separately:
Quest is also the only one to offer "Unsaturated (Transcobalamin) Vitamin B12 Binding Capacity" which is kind of the US's answer to the holo-tc test although they are testing slightly different things.
If you need the links to Quest let me know. But the lab will obviously depend on what their doctor uses. If you find the "CPT code" which is listed for each test on the labcorp/quest pages, that is a sort of universal identifier you can give to the lab to specify the test.
Wow!!! Ask a question and you get a great answer. How do you all know so much? Thank you so much. This is wonderful. This will really help them. They know nothing about B12 and I just told them about all of this today, so I'll go through all of this and explain it all. It amazes me how much you all know. You even know all the Acronyms for the blood tests. Thank you so much jade_s!!
You're so welcome!!! LOL I have lots of practice over the last 6 years helping my various relatives get tested. I copy/pasted from previous emails. There was a big learning curve. I wish I had known all this myself 7 years ago!! Live and learn
You can also suggest they read the pediatric edition of sally pacholok's book. I haven't read either one myself yet, but I know they are chock-full of info... and a doctor might take the book more seriously than the patient....
Yeah, it's kind of sad that we know all this stuff. And on the other hand it's great to know all this stuff. I had no idea she wrote a pediatric book. I think that would be very helpful!
I don't want to scare them because some of the information might be a little scary for this young family. They're already dealing with the fact that their two children have autism. One is nonverbal and his dad would just love to hear him just call him Dad one time. They had these children at 19 years old so they've done an incredible job with filling themselves with information. They are great parents. It's another one of those autoimmune things doctors are only just starting to know more about. Sally's pediatric book might be perfect for them. Again thank you so much. I don't even know if I'm barking up the right tree. I don't even know if B12 deficiency really does lead to autism or if B12 will help an autistic child. I've been trying to find out more information about it but there's not a lot of information out there. I just saw it in the movie that Sally made and I read it somewhere online before that. But they don't have a lot of information about it. And the adult information is kind of scary for young people. Anyway thank you again so much!!
Yeah, it's kind of sad that we know all this stuff.
Good point!! I feel like I have an M.D. in thyroid and B12 issues 🤣
I also don't know too well how strongly autism is linked to B12, but I have read enough showing some links in some cases, so that if it was my child, I would try it. And B12 is such a simple and harmless thing to try. You're very kind to think of them!
So interesting! I developed significantly autistic traits when I was severely deficient in B12 and other nutrients. I have fairly severe malabsorption problems.
My problems have lessened with my efforts to manage and counter my deficiencies.
Thanks deniseinmilden, I hope you are finding some relief with B12. It makes you wonder doesn't it? Autoimmune issues are so difficult to deal with. Good luck to you.
I think there is also some genetic link between autoimmune problems and autism. What that is, I don't know. I wish I knew more - all of my sisters' children have autism.
Aside from that, it is sometimes difficult for some with autism to have a healthy varied diet as there is a tendency to eat a repetitious diet, with a liking for quite a narrow range of ingredients. There can also be a problem with knowing when you are hungry, when you are full.
Of course, autism will be different for every person - and so this will not be relevant to all.
Right. Well the mother told me that they are very picky eaters her children, and that they don't absorb their nutrition like other children in the small intestine so I thought perhaps that was a sign that maybe they had some kind of deficiency. Or maybe bad bacteria. It's always good to rule things out. It's just one less thing to worry about. But I think it's always good to get those kinds of tests so that as the years go by and you get those tests more and more you've got something to go back on and compare to.
I guess they must have had some tests already, if she knows that their small intestines are not functioning properly. SIBO ? (small intestine bacterial overgrowth) ie bad bacteria. Yes, on a self-limited diet, they are likely to develop several vitamin deficiencies, too, in any case. Probably vitamin tablets would be an easier route to ensuring a healthy intake - the doctor could advise on what and how much after tests. Monitoring needed too.
I totally agree with you re getting baseline results so potential problems can be identified and action taken based on direction of travel, rather than wait for deficiency symptoms to alert GPs.
Thanks cherylclaire, I asked her about SIBO. They didn't recognize the name. But now they have heard it and when they hear it again, it will click. And even if the kids are good to go, maybe they know a grandparent or friend or someone with these symptoms. I just think that the more people know about B12, the better. Now these young kids will be informed and later in life, if something happens, they will have heard of this. I wish I had known about this. I never heard of such a thing as PA or could ever imagine a vitamin would be so vital.
I have P.A and all my children have autism. My gp agreed to give them a full blood count and they actually have high B12 levels. The only thing flagged was my son having slightly low vitamin D levels which I now give him drops for. Sometimes autism just is…
Ok, thank you so much for that, newbiegirl. I was afraid to say anything to them but when I saw that scene in Sally Pacholoks movie, I thought it's good to rule something out. I think they may feel like they did something to cause it and feel guilty. They wish they never got them child vaccines. But maybe it just is..... Thanks again and good luck to you with your PA
There is no known cause for autism as yet. It is not helpful to feel guilty. Best to just enjoy your children and their unique differences. Your are very kind wanting to help your friend.
Right. Thank you. They do just accept them, really they do. They love and adore them. And the children are thriving and very happy. But they live in a rural area and they don't have friends that understand their kids so they are kind of isolated that way. I think it is just in the back of their minds, but I don't think they let it fester or anything. They are a happy little family. Lots of stimulating things they do together. They know what each child likes and doesn't like and they encourage them. I am so proud of them. They just bought their first home and I am just so proud of the life they made.
EllaNore, your friends are lucky to have you rooting for them. Support groups and online forums can help with feeling isolated. They sound like they are doing great. 👍
One additional point about testing for B12 deficiency: According to the article, "The Many Faces of Cobalamin (B12) Deficiency", there are two populations of patients with B12 deficiency: patients with blood symptoms, which (I believe) show up in lab test results; and people with neural symptoms, which often do NOT show up in lab tests. (The article also describes the effect that B12 supplements can have on test results.) The most definitive lab test result for people with neural symptoms is a positive intrinsic factor antibodies test; about half the people with intrinsic factor antibodies have positive test results, which in most cases means the person's immune system is destroying intrinsic factor. (I had a positive intrinsic factor antibodies test result, and the lab included a note saying (paraphrased) that the result might not be valid for a person who is injecting B12.)
The bottom line is that, lacking a positive intrinsic factor antibodies test, B12 deficiency is a clinical diagnosis for people with neural symptoms. It is common to find doctors who do not understand this important point.
I invite correction on any point on which I have erred or have not been clear.
Yes, thanks WiscGuy, I almost called you WiseGuy, I just had a member tell me before I get an IFAB test to stop my B12 72 hours prior, but I didn't know that and I took it today. So, if you had an injection and still came out positive, I would go with that? if it came back negative, I would wonder?? Right? also, other tests might back it up. But I had a nice conversation with a new doctor today, and she was so open and just simply talked to me. I said to her, you know, my blood work doesn't look all that bad, everything is just a little high or a little low, but from what I understand it is the symptoms that one should go by, and she agreed. Mine are pretty bad. She said not all doctors do that, but also, that if they went outside of protcol, they could get sued so that is why they have to go by the book. Insurance companies are tying their hands. But also some just don't care to learn. But all in all today I had a pretty positive doctors appointment, listening wise. Don't really remember the last time I left a doctors office feeling hopeful. I didn't even cry. LOL
"I said to her, you know, my blood work doesn't look all that bad, everything is just a little high or a little low, but from what I understand it is the symptoms that one should go by, and she agreed. Mine are pretty bad. She said not all doctors do that, but also, that if they went outside of protcol, they could get sued so that is why they have to go by the book."
Something that seems to sometimes slip through the cracks is that, according to the article "The Many Faces of Cobalamin (Vitamin B12) Deficiency", there are two populations of patients with B12 deficiency: patients with blood symptoms, and patients with neurological symptoms. In these two populations, the symptoms are different, with very little overlap; the diagnostics are different (lab test results vs clinical diagnosis); and the treatments are different (brief loading followed by injections monthly or even less frequently for blood symptoms, vs injections every other day or twice a week for two years or longer for neurological symptoms). I do not live in England, but my understanding is that relevant references generally instruct British doctors to follow the above treatment protocols for patients in each of these two B12 deficiency populations. Yet it is extremely common for people on this forum to describe extreme distress, physically, cognitively, and emotionally, because they are being treated with the blood protocol even though they clearly are in the neurological-symptom population. The common defense is that the physicians are compelled to follow protocol, when clearly they are following the wrong protocol. I am given to understand that local precincts devise individual protocols, and the local protocols are prone to error, but my understanding is that generally protocols are correct, but not followed by physicians.
Is this summary of procedures and practices in Great Britain correct?
Gosh, I live in Iowa, so I do not know what the protocol for GB is. But, I believe the treatment for both is B12. I guess it just depends on how much. I'm not sure. I inject daily. Even twice sometimes if the pain and fatigue is really bad. I sent in a referral to my doctor a few days ago asking for a referral to a doctor that would know or specialize in subacute combined degeneration. Because I have advanced stages of B12 deficiency and just the B12 injections everyday are not helping with my l neuropathy and the weakness and pain in my left leg and the pain in my left foot. I was hoping possibly there would be some other treatment for the nerve part of it. I really am struggling with terrible pain.
I hope someone can help you with your question. For me my loading doses were one shot a week for 3 weeks and then one injection a month for the rest of my life but that wasn't enough so I quickly started buying my own ampules and injecting daily. A lot of things have gotten better but this left leg and foot and the pain running up and down my spine is just really tiring. I really have no where to turn to ask what to do with the neuropathy. From what I hear there is really nothing anybody can do about it. They have all these treatments but they're very expensive and my insurance doesn't cover it. And I thought if there's a cure then why are so many people suffering. I wonder if all these cures out there are scams? all these treatment centers claiming they can help you with your neuropathy. If that's the case why are we all suffering? I hope somebody can correct me if I'm wrong because I really need help with it.
Some info in first three books may be specific to UK.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Both books below mention autism.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US 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".
Sally Pacholok , author of "Could it be B12, has written some online articles, including one that mentions autism. See link below.
People with high levels of B12 in their blood can still experience symptoms of B12 deficiency.
If people have symptoms consistent with b12 deficiency but a serum B12 result that is within normal range or even above range, worth looking at possibility of Functional B12 deficiency.
Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of deficiency.
Tests such as MMA, homocysteine, Active B12 (also known as HoloTC /Holotranscobalamin) may be useful in diagnosis of Functional B`12 deficiency.
I think it's useful to for parents to seek support if they suspect a child has B12 deficiency.
Parents of children with B12 deficiency are not always listened to.
See blog posts below about parents of children with suspected PA/B12 deficiency from Martyn Hooper's blog about PA and B12 deficiency
The book, “Autism in Heels”, by Jennifer Cook, might also be useful for girls and women, although, after reading it, I began to wonder if all of us are somewhere on the spectrum - one close relative has synasthesia.
Thank you sleepybunny, I will pass this along. I remember watching a documentary about a woman who has autism and was never expected to even speak and now she runs her own business designing cattle ramps for cattle. Brilliant woman
You're are truly amazing sleepybunny!! This is so great. I might just copy and paste and send this entire post to them. I will go through all of this. Thank you so much!!! I hope this info helps others.
This is interesting as B12 is used therapeutically for autism. There have been trials where injections twice a week have been found to help some children.
Thanks. It is very interesting. I have not heard from them if they got the tests for their kids. I was hoping to hear back, but I don't want to harp on them about it. And if a doctor tells them something different from me, they're probably likely to believe the doctor rather than me. All I can do is give them information and hope that they do something with it. I'd like to find more information on B12 treatment for autism but it's very hard to find.
Yes of course. Hopefully research is going on and this will be better understood. Interestingly this paper says B12 levels in the brain are lower in people with autism, so it may be that levels are okay in the blood but not getting through to the cerebrospinal fluid...sciencedaily.com/releases/2...
Thanks you VellBlue, that is an interesting study. They got the info from biopsies of the brain of deceased individuals. It really makes me wonder if the B12 that any of us are taking is getting to our brains enough. I will pass this on in hopes that they read it. Thank you. The other B12 articles at the end look interesting too. Thanks again. Do you have ASD? If so, do you feel any benefit from B12?
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There was a big learning curve. I wish I had known all this myself 7 years ago!! Live and learn 
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