What Are the Most Common Vitamin Deficiencies in Celiac Disease Patients?

I would value such monitored statistics. This seemingly small step in overall wellness is beyond my current realities however. My General Practitioner refused my interest in a blood analysis of mineral & vitamin levels. She being the first authority I turned to seeking advice on my celiac symptoms. Ushering me out of her office, her extensive education provided her with this summary, "just follow the Canada Food Guide".

Celiacs certainly may have vitamin deficiencies but the solution is not always to add supplements to one's diet. I recently tried adding vitamin B12; my reaction was similar to adding gluten to my diet. My symptoms disappeared within two days of stopping the supplement. I discovered that celiacs do not absorb a B12 supplement. (It was labeled gluten free.) I wish there was more discussion regarding how celiacs can safely compensate for potential vitamin deficiencies.

My experience with doctors is "follow the gluten-free diet." No follow-up. Thankfully my kids' doctors want follow-up with lab work. Kids hate it but my oldest still struggles with deficiencies after nearly six years gluten-free and despite supplementation (diagnosed when he was 4).

Celiacs certainly may have vitamin deficiencies but the solution is not always to add supplements to one's diet. I recently tried adding vitamin B12; my reaction was similar to adding gluten to my diet. My symptoms disappeared within two days of stopping the supplement. I discovered that celiacs do not absorb a B12 supplement. (It was labeled gluten free.) I wish there was more discussion regarding how celiacs can safely compensate for potential vitamin deficiencies.

I get Vit B12 injections once a month, at my doctors office. It is a prescription of straight Vit B12, no chance of a gluten reaction. I have been getting it since I was diagnosed 9 years ago. I quit taking it once, got so tired, felt like I was gonna fall asleep standing up. Since then haven't stopped getting it, it gives me energy, and makes me feel half normal.

Celiacs certainly may have vitamin deficiencies but the solution is not always to add supplements to one's diet. I recently tried adding vitamin B12; my reaction was similar to adding gluten to my diet. My symptoms disappeared within two days of stopping the supplement. I discovered that celiacs do not absorb a B12 supplement. (It was labeled gluten free.) I wish there was more discussion regarding how celiacs can safely compensate for potential vitamin deficiencies.

Good point! I use a liquid form of B-12 with no issues.

Celiacs certainly may have vitamin deficiencies but the solution is not always to add supplements to one's diet. I recently tried adding vitamin B12; my reaction was similar to adding gluten to my diet. My symptoms disappeared within two days of stopping the supplement. I discovered that celiacs do not absorb a B12 supplement. (It was labeled gluten free.) I wish there was more discussion regarding how celiacs can safely compensate for potential vitamin deficiencies.

That is very interesting about the Vitamin B12 shot. I am in the same category as Nicole in that there is no way my doctors would do anything like that.

I find that raw foods and juicing really helps me a lot.

I have a lower quality insurance company, actually a medicaid company, and so with my doctors they have to be dragged kicking and screaming just to give me any tests at all. follow-up, no that is not an option. monitoring of my ability to absorb, no that is an exotic thing unavailable.

B12 injections do not work here on the NHS in England as they contain the wrong type of B12. I was so low on B12 I nearly died, was told I had to have B12 injections and I said, are the injections the same as the tablets you put me on, they said yes, and I said, what's the point the tablets didn't work so why would the injection!? So I did my research (around the world on the net from 1960 to present day, took me 9 hours) and found a B12 spray that you spray onto your tongue. My doctor said she could not prescribe it as the NHS wouldn't fund it!!?? Yet would fund an injection every month????? Anyway, I have been using it for the last 5 years and my B12 is now 800, instead of being 100. Do your research folks.

B12 injections do not work here on the NHS in England as they contain the wrong type of B12. I was so low on B12 I nearly died, was told I had to have B12 injections and I said, are the injections the same as the tablets you put me on, they said yes, and I said, what's the point the tablets didn't work so why would the injection!? So I did my research (around the world on the net from 1960 to present day, took me 9 hours) and found a B12 spray that you spray onto your tongue. My doctor said she could not prescribe it as the NHS wouldn't fund it!!?? Yet would fund an injection every month????? Anyway, I have been using it for the last 5 years and my B12 is now 800, instead of being 100. Do your research folks.

B12 is listed as the number 1 deficiency???

B12 injections do not work here on the NHS in England as they contain the wrong type of B12. I was so low on B12 I nearly died, was told I had to have B12 injections and I said, are the injections the same as the tablets you put me on, they said yes, and I said, what's the point the tablets didn't work so why would the injection!? So I did my research (around the world on the net from 1960 to present day, took me 9 hours) and found a B12 spray that you spray onto your tongue. My doctor said she could not prescribe it as the NHS wouldn't fund it!!?? Yet would fund an injection every month????? Anyway, I have been using it for the last 5 years and my B12 is now 800, instead of being 100. Do your research folks.

Sounds like a new doctor is needed when they won't even write the prescription for you, regardless of who pays.

I’ve dealt with daily headaches and migraines 15 days out of the month since I had HELLP syndrome with my 7th pregnancy (4th live birth) in 2006. Since then I can’t keep weight on, have balance issues and chronic pain as a result of a fall on my steps fracturing 4 vertebrae and 2 ribs. My PC ran some labs and declared everything is awesome!!  My health history clearly states celiac, and family pernicious anemia and hemochromatosis. 2 years later I had to return to her office so she would renew my prescriptions. At this time she insinuated I was underweight on purpose, to which I reminded her I haven’t felt well for years. Her “nutritional counseling” consisted of telling me to force feed myself. She ordered labs and I reminded her I wanted to be screened for pernicious anemia and hemochromatosis. The labs came back with 0 folate and low B12. I was ordered to take Folate for 90 days and my labs would be rerun. She refused to listen when I told her I couldn’t take vitamins because of the reaction and also I clearly had malabsorption issues. She actually said I had no risk factors for malabsorption - I didn’t have celiac, blah blah........And she refused to run an iron level so I could rule out hemochromatosis. The gastro that took over after my gastro retired refused to run an iron/ferritin test because only women in their 60s are diagnosed. I said my sister was diagnosed in her 30s and grandmother in her 40s. He also felt I had a lot going on, which seemed a bother to him. He didn’t treat folate deficiencies and seemed uninterested with any of my questions. He was 100% certain that if I were “truly following a gluten-free diet” I would not have these problems. 
 

Since then I’ve had my celiac antibodies return negative and my ferritin levels are extremely high. I’ve had to secure cyanocobalimin on my own to give myself B12 injections.  After the third injection my headache since 2006 completely resolved, my pain improved drastically and the balance issues seem to be improving. The ferritin needs further evaluation due to the severity of hemochromatosis. I’ll give one more gastro a chance to work with me, then I’m going out of state. It is utterly ridiculous for our medical professionals to be so arrogant and ignorant when it comes to celiac. With the presence of one autoimmune disease comes a higher prevalence of companion diseases. After 24 years as a diagnosed celiac, I’m fortunate to be as healthy as I am, but to ignore family history is negligent. I live in Grand Rapids. MI that boasts the best healthcare. 
 

My point in relaying all of the above is to encourage people to stay on top of your research and know what your treatment options are. After 24 years as a diagnosed celiac I had not had these experiences with medical professionals until now, when I’m clearly in crisis. My sister has had her gallbladder burst, was admitted for an emergency cesarean with her 2nd child because her OB believed she was an alcoholic (hemochromatosis often causes liver disease), had stones blocking her main bile duct in her pancreas (scarring from burst gallbladder) and was even sent home from ER because the gastro didn’t believe the CT scan showing an issue with her pancreas. Her low weight is mentioned EVERY TIME. We have to know what we are dealing with before we go to the doctor. 

On 5/18/2015 at 7:16 AM, Guest Anne said:

Celiacs certainly may have vitamin deficiencies but the solution is not always to add supplements to one's diet. I recently tried adding vitamin B12; my reaction was similar to adding gluten to my diet. My symptoms disappeared within two days of stopping the supplement. I discovered that celiacs do not absorb a B12 supplement. (It was labeled gluten free.) I wish there was more discussion regarding how celiacs can safely compensate for potential vitamin deficiencies.

So glad to hear that.  I go thru the exact same thing and get the shots now

Add to the list:

Potassium: RDA 4700 grams a day. That's around 10- 12 ounce glasses of milk or 15 bananas a day. Estimated 60 to 98 percent of the US population is deficient. Effects Blood Pressure and bone density among other things. Blood tests are not an indicator of status. Supplementing over 100 mg a day can cause intestinal lesions so food source is best. Potassium is the most abundant of all the essential minerals in our bodies, and the minimum for it is 10 times the minimum needed of Sodium (4700 grams K vs. 500 grams Na). On a 2000 calorie diet that is about 2.5 mg Potassium per 1 calorie consumed.

Lithium: 1 mg to 40 mg a day, Primary source is drinking water and we all drink bottled. Anger management. In myself it reduced the urgency for immediate gratification. A calming effect.

Choline: 500 mg  to 3500 mg per day. Eggs were a primary source. Deficiency causes disruption of fat processing in the liver and can cause non-alcoholic fatty liver disease.