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Recently I posted a question to the list about B-12 being the only symptoms
for celiac.  My mother and I both have celiac. My daughter had a low B-12
last year.  I just got the results of a B-12 done this week and they came
out neg.  I will have to keep an eye on it.

Thank you to all that took the time to respond.  Below are their posts.


>B-12 was my only symptom (that I knew of) confirmed with antibody and
>biopsy.  I had reflux which went away after going gluten free so I guess I
>really had another symptom.


>My B-12 was low before I was diagnosed.  It has been fine ever since.  There
>were other vitamins that were also low but they were brought up by taking
>double the amount of multivitamins.
>I was sent to a hematologist who brought the level up to a level where I was
>no longer weak and tired.  I could not have been celiac because I did not
>have diarrhea. When I complained to Dr. Frankenstein, my general Practitioner
>that the specialist was treating my symptoms and not finding whatever disease
>that I had I was sent to a medical school for a complete checkup and finally
>a diagnosis.  In two weeks I was better.


>I did and my doctor just had me give my self the shots for  yrs then i
>had to stop it changed my blood he said he just couldn't fathom celiac disease
>and was angry when we got on a plane and went to Tex and got the diagnosis,
>even the Mayo Clinic didn't do a biospy, was gf fifteen yrs and then moved and
>found a great doc and he did a biospy that showed celiac and permanent damage.


>I was diagnosed coeliac in childhood and "cured" in my late teens.
>At 40 I was being given B12 injections every 3 months for pernicious anaemia
>with no one knowing the cause.
>
>Eventually I saw a doctor who was not happy with the anaemia without knowing
>why.  He actually started asking questions, one of which was have you had any
>problems or illnesses in childhood of which I may not be aware?  My answer was a
>naieve "I used to have coeliac as a child" His jaw dropped and he told me there
>is no used to be with coeliac and arranged a consultation with a specialist who
>did the biopsy and the rest is history.
>
>I am 55 now, healthy and happy on a GF diet.


>That was the beginning of the ongoing story in my case.  After low b12 my doc
>sent me for a nuclear medicine test to see if I absorbed, which I didn't.
>Then on to a upper gi series which showed nothing, then on to biopsy of small
>intestine which showed inflammation.  That, I guess, was the reason for the
>b12 vitamin not absorbing.  After biopsy I went gf for three months after
>which I was rebiopsied and that biopsy came back normal.  I was able to stop
>my b12 shots but just today after being gf for six months I found out my b12
>is starting to decline again.  I don't know if I am getting hidden gluten in
>and I am on the way down again or what.  I hope you have a better time at
>this than I have.  I read alot and it helps but there are just some things
>that I can't get answers for.  Good luck to you.


>Well, I had low B-12 for several years.  Finally, 3 years ago I went back to
>the gastroenterologist and he ran an upper GI (showing nothing) and then he
>took biopsies...nothing showed up at all.  My symptoms were feeling sick and
>gassy and frequent bowel movements, etc.  In addition to my B-12 still being
>low, he also found that I had low Vitamin A (beta carotine).  Even though my
>biopsy was negative, he recommended that I go on the gf diet for 3 months as
>a test.  The first 2 months were torture because I was giving up all these
>foods and still sick....but then the last month revealed drastic improvement.
>
>Against his wishes, I gave myself a challenge -- had pizza....was so sick
>for 3 days I could hardly believe it.  I guess I was afraid that if the
>biopsy was negative and my symptoms were atypical (would come and go over the
>course of the last 20 years and I didn't always lose weight during the spans
>of time that I was sick) that I didn't really have celiac and I really didn't
>want to give up all those foods if I didn't really have to, you know? Well,
>I don't have a definitive diagnosis but he feels that I am a celiac.  Plus,
>after being on the diet for 6 months (strict diet), I went in to have my B-12
>and Vitamin A levels checked....all had risen significantly!  (a couple of
>years before that, I had taken B-12 shots every week for several months and
>it didn't raise the level much).
>
>Do you have any other symptoms -- stomach related, etc. or just a low B-12


>I am a celiac and am currently the leader of the MD chapter of CSA/USA.
>
>I saw your message on the Listerve and thought that my story might be
>of interest to you.
>
>My family doctor found signs during an annual physical exam 5 years ago
>that I was deficient in B-12, and he ran some further tests to confirm
>it.He started me on monthly injections of B-12 from then on. I had not
>symptoms of celiac disease at that time and had never heard of it.I was
>told that many doctors would not have even spotted this lack of B-12
>from a normal exam.
>
>About 4 months later, I began with the symptoms of celiac disease, and
>within about 2 more months, I had been diagnosed and confirmed with a
>biopsy that I had it. The B-12 injections continued as well. After 4
>months, I had a second biopsy, and after one year, I had another one.
>The diet was definitely keeping the celiac problem under control,but
>further tests indicated that I was still not absorbing B-12 into the
>body as one would normally do, so I was told to remain on monthly
>injections indefinitely.
>
>I was also found to be lacking in calcium, vitamin D, and
>testosterone and was put on heavy daily doses of each to take since all
>three are related and needed, and my body is not absorbing enough of
>them either. I'm fine as long as I keep taking them.
>
>The net result is that the diet may keep you feeling well with no
>obvious symptoms, but there is no guarantee that you are absorbing the
>proper quantities of necessary things. Thus, checkups are really vital.I
>now see my family doctor, my GI doctor, and my endocrinologist at least
>once a year to get checked, and they can usually spot trouble between
>them before I feel any symptoms.
>
>Thus, having low B-12 may be a symptom of celiac disease, but I would
>doubt that most doctors are good enough to find it that way. B-12 is
>crucial to healthy living, however.
>
>I hope that this is helpful to you, and good luck.


>I am a biopsy diagnosed celiac.  At the time of diabnosis I was severely
>anemic.  B-12 deficiency was a part of the diagnosis and monthly injections
>were prescribed.  I have bllod work done from time to time  - usually about
>once a year - to determine the adequacy of the dosage.  I am told that my
>body will not smake enough B-12 normally so I will have injections for life.
>However I am also told that this is the result of CD and not a method of
>diagnosing the presence or absence of the disease.  That can only done by a
>biopsy.


>low B-12 is a leading indicator of celiac afflication.  Have the biopsy and
>if your unlucky it will be possitive.  I get B-12 shots every month ( for
>ever).  No big deal.
>
>In addition, Vitamin replacement, primarily through pills/supplements is as
>vital as remaining on a GF diet.  Whether the individual's microvilli are
>nonexistent, stunted, trying to grow back, the normal absorptive power is
>never restored fully.
>
>I take a mega vitamin twice a day along with extra glutamine, B-6, zinc,
>selenium, Cal/mag, cod liver oil, and B-12 shots.  This is because I know:
>"the normal absorptive power is never restored fully.".  Also if you read
>what top young athletes are eating and taking for natural development, this
>is not enough and they have a normal/perfect stomach.
>
>My other comment is to try to eat foods which go through the system slowly
>or tend to slow down the digestion.  Rice and casein are two good examples.
>This allows more time to digest the benefits from the food as it passes by.


>I have actually just completed a research project on B12. You may want
>to check our an article I found in Minn Med.1996 May 79(5)29-30. Cordum
>nR et al report finding Celiac disease in a man with only the symptom of
>B12 and folatae deficiency.  He was treated early for B12 with limited
>success, until he was diagnosed with CS and put on the gluten free diet
>he did not respond to B12 treatments.
>
>B12 deficiency is very common among Celiacs. I acutally in my general
>research  came up with several article on Celiac Disease when just
>looking for B12 deficiency