Gallbladder attacks, B12 & D deficiency

[Marmarl]

Hello!

First post-

I have been suffering from gallbladder attacks for 3+ years, a B12 deficiency in which I get monthly injections, also a vit D deficiency for which I take 50,000 iu per week. My HIDA scan shows irregular ejection, ultrasound shows polyps and no stones or sludge. I have bloating, diarrhea, fatigue. I mix up my words and do and say things that don't make sense. I haven't had gluten in 11 months because I really think this is the cause. Is there any test I can request without having to eat gluten for 8 weeks to check for Celiac? I've recently been referred to a GI specialist and I'm awaiting my first appointment.

[cyclinglady]

Hi!

Unfortunately, all celiac disease testing (antibodies/blood test and endoscopy/biopsies) requires you to be on a full gluten diet.  The exception is genetic testing.  However, over 30% of the population carries the genes that could develop (only a tiny percentage do) into celiac disease.  There is a problem with genetics.  Not all genes have been identified.  So, genetic testing helps to rule out celiac disease, but it is not perfect.  

Only you can decide if a gluten challenge is the right decision for you.  Talking to your GI can help.

You have been gluten free for 11 months.  If you are strictly following the diet, in theory, your Vitamin B-12 should have resolved or improved.  I say that because with months of the diet, my iron-deficiency anemia resolved (and it was severe with a ferritin level of a 2 and hemoglobin so low, I could not catch my breath).  I no longer required iron supplementation.   I did have the advantage of really knowing the diet well because my hubby had been gluten free 12 years prior to my diagnosis.  Are you sure you are really gluten free?  It might be worth getting the complete blood test panel now.  

Gallbladder?  My injection rate was a zero.  My GB was infected (no stones) and I had to have surgery.  This was about five years before my diagnosis.  Non-functioning gallbladders are a family curse.  We now that celiac disease runs in families too.  I like to think that my GB might have recovered if my celiac disease diagnosis had been caught.

If you do get the blood test, insist on the full panel. To complicate things further, I test positive to only the DGP IgA (even in many repeats) which is really weird.  If my GI had not run the entire celiac blood panel, my diagnosis would not have been caught.  Without my GB, I had no longer had GI symptoms, just anemia.  (My GI caught my diagnosis when I went in for a routine colonoscopy because yes, I am over 50!)  Biopsies confirmed small intestinal damage.  

Your words mixing up could be due to celiac disease or or B-12 deficiency.  Hard to say.  Worrisome that your B-12 deficiency has not resolve with diet alone (are you Vegan)?  Make sure your GI checks you for Gastritis (e.g. h.pylori or autoimmune). which can also lead to a B-12 deficiency.  

I hope this helps.  

 

Edited November 7, 2019 by cyclinglady

[Marmarl]

52 minutes ago, cyclinglady said:

Hi!

Unfortunately, all celiac disease testing (antibodies/blood test and endoscopy/biopsies) requires you to be on a full gluten diet.  The exception is genetic testing.  However, over 30% of the population carries the genes that could develop (only a tiny percentage do) into celiac disease.  There is a problem with genetics.  Not all genes have been identified.  So, genetic testing helps to rule out celiac disease, but it is not perfect.  

Only you can decide if a gluten challenge is the right decision for you.  Talking to your GI can help.

You have been gluten free for 11 months.  If you are strictly following the diet, in theory, your Vitamin B-12 should have resolved or improved.  I say that because with months of the diet, my iron-deficiency anemia resolved (and it was severe with a ferritin level of a 2 and hemoglobin so low, I could not catch my breath).  I no longer required iron supplementation.   I did have the advantage of really knowing the diet well because my hubby had been gluten free 12 years prior to my diagnosis.  Are you sure you are really gluten free?  It might be worth getting the complete blood test panel now.  

Gallbladder?  My injection rate was a zero.  My GB was infected (no stones) and I had to have surgery.  This was about five years before my diagnosis.  Non-functioning gallbladders are a family curse.  We now that celiac disease runs in families too.  I like to think that my GB might have recovered if my celiac disease diagnosis had been caught.

If you do get the blood test, insist on the full panel. To complicate things further, I test positive to only the DGP IgA (even in many repeats) which is really weird.  If my GI had not run the entire celiac blood panel, my diagnosis would not have been caught.  Without my GB, I had no longer had GI symptoms, just anemia.  (My GI caught my diagnosis when I went in for a routine colonoscopy because yes, I am over 50!)  Biopsies confirmed small intestinal damage.  

Your words mixing up could be due to celiac disease or or B-12 deficiency.  Hard to say.  Worrisome that your B-12 deficiency has not resolve with diet alone (are you Vegan)?  Make sure your GI checks you for Gastritis (e.g. h.pylori or autoimmune). which can also lead to a B-12 deficiency.  

I hope this helps.  

 

Thanks for the advice! You have been very helpful! I eat red meat multiple times per week, always have, never a vegetarian. I also eat clams, mussels, oysters, etc. because I know they're high in B12. I've been having injections for 16 months and I'm still hovering at about 300. I also take sublingual. It is possible that I have unknowingly had gluten. I did have it one day in May on purpose, any other time would be due to ignorance I guess.

[GFinDC]

Hi,

I was on the 50 K IU D pills also.  My vitamin D barely budged on them.  When I added NatureMade 1000 IU D daily it did go up.  So a daily intake seems to be more effective than a once weekly, regardless of dosage.

[NNowak]

I also had the missing words, confusion, severe cold intolerance and pins in my fingers with my B12 deficiency. My folate was 0 as well, but is now at the low end of normal. (You need B12 to synthesize folate in order to be absorbed by your body)  I take an injection of cyancobalamin every 10 days 3 months after diagnosis of the deficiency. Eventually injections will be spaced further apart. The norm for each individual is different.  Something to discuss with your doctor. 
 

My diet consists mostly of fish and chicken, eggs, potatoes and steamed veggies. There isn’t much else my stomach tolerates. While my family has a history of pernicious anemia, I really was surprised with the deficiency.  Then I discovered I also have hereditary hemochromatosis. While most of my symptoms resolved with the B12 injections, my education as a financial analyst doesn’t qualify me to manage all that and chronic GI symptoms. So onto the gastro I go for detective work. 
 

I’d get into the gastro if I were you, so these symptoms can be managed by a specialist. You should have improved symptoms by now if your health was being managed properly. I agree with the genetic test to exclude or include the possibility of celiac. A baseline antibody test will also give you an idea if you have any antibodies in your system that may be affecting your absorption of nutrients. An EGD can determine if you have any current damage to your stomach and small intestine. You can also biopsy your parietal tissue for intrinsic factor, which is necessary to carry the B12 nutrients to your ileum for absorption. 
 

Good luck!