<<Disclaimer: Verify this information before applying it to your situation.>>

I had asked the question as to whether B12/folic acid shots on a regular
basis were the norm, or could I possibly hope that this would be a life
long venture.

I want to thank everyone who took the time to E-mail me.  I received 20
responses.  Of those 20 responses, there were 2 who were diagnosed with
pernicious anemia and for these people, life time B12 injections are an
absolute must as their bodies lack the ability to absorb B12, which is
another autoimmune disease separate from celiac as illustrated in this
response:

> There is another consideration.  Celiac disease patients often have other
> concurrent GI problems.  The B12 deficiency might be caused by antibodies
> to the gastric parietal cells that line the stomach which are necessary for
> the ability to absorb B12.  This is another autoimmune disease known as
> pernicious anemia.  Only your doctor can tell you for certain.


Some persons wrote telling me that after a period of healing time which
varies from individual to individual, a GF diet should eliminate the
need for injections. Examples of some of the responses reflecting this
view:

> My understanding is
> that once the gut has healed, the body can produce for itself and
> supplements are no longer necessary. Hope this helps.

> Prior to my diagnosis, I was also anemic and required hospital
> administration of two units of blood. Following aproximately six months
> on a gluten free diet, all blood tests were normal.
> I have the tests done evry 3 to 6 months and everything is still
> fine.

> Your stomach heals fast.  If you stay on a strict GF diet you will no longer
> have to take the shots.  The aches, and pains of the stomach start to leave
> on 3 to 6 days on GF diet, it has to be strict though, absolutely not
> cheating.  I took shots for years for anemia  and nothing ever happened
> until I went GF.


>  I was on B12 shots for months and months, so long ago I can't
> remember. It was more than a year to be feeling really well, and I kept
> getting stronger and stronger for years. Once I was well on the gluten
> free diet, I took only a vitamin-mineral suppliment and have ever since. I
> have been gluten free for 40 years and am very well. At 78 I do weights at
> the gym and ride 5 miles a day on a stationary bike. Play a lot of bridge
> and deliver meals on wheels. I hope you will be as well and enjoy your
> life as I do!


I had one repsonse telling me that B12 deficiency in a celiac is rare,
and that anemia most often found in celiacs is iron deficiency, then
followed by folate deficiency, and suggested these articles for reading
on the subject:
http://www.aafp.org/afp/980301ap/pruessn.html
http://www.nejm.org/content/1996/0334/0018/1190.asp


However, the remainder of my reponses were along these lines as these
examples illustrate:

>  I had to start B-12 injections about 3.5 years ago (2 years
> after my initial celiac diagnosis) - and it took about a year and a half to
> stabilize so that I wasn't having neurological symptoms.  Then after
> stopping the shots I was taking sublingual B-12 (very expensive from Source
> Natural).  I went about 1.5 years before loosing my "stores" (despite the
> sublinguals) and have been taking a shot of B-12 - 1cc or more every three
> weeks since.  That's my story.  Good Luck, looking forward to the summary.


> I also would like to know what you hear from the list folks.  Once a month
> I get 1000 mcg injections of B12 and asked my doc last month when I might
> be able to wean myself off of these--she indicated that this might well be
> a lifetime routine.  I tried the B12 Nascobal nasal gel--but had breakthru
> symptoms of peripheral neuropathy.  I had not heard of the sublingual B12.


> Good question!  I can let you know in the next 6 months!  I have been on B-12
> shots since - june of 1997, first weekly for 12 weeks, then bi-weekly for 12
> weeks, and now monthly for 9 months?? - AND after that time, my doctor will
> try me with no shots for 6 months!  My last shot will be in March, after I
> finish all my graduation requirements!

> I think I will have to take the B-12 injs for the rest of my life, because my
> body cannot take it from my food. I have tried the vitamins, no help.  All I
> can say is stay with the injections.  My b-12 levels dropped so low, I ended
> up in the Hospital for a week, while they got my levels back up to close to
> normal.  B-12 is required for the nervous system to function properly.  With
> out it, you loose motor function, and can lead to seizures.  Very scarry.  I'm
> not sure how sensitive you are, but I can definitely tell when it is time for
> my next inj.  I start getting nervous ticks, numb fingers & toes, and I get
> visual auras -similar to those with migraines, and I loose balance/ my eyes
> do not focus (or at least I cannot see straight)


> The short answer is probably yes.  The physician that originally discovered my
> celiac condition prescribed monthly B-12 shots and told that I would need them
> for live as my body would not manufacture enough to meet "normal"
> requirements.  My current physician concurs.  I get a yearly bllod test to
> verify the dosage.  I have been a diagnosed as a celiac for over six years and
> have taken monthly B-12 shots for that entire time.


Candice in California