Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Folate Deficiency


georgie

Recommended Posts

georgie Enthusiast

I have just been dx as folate deficient. Has anyone any idea if Celiac could be causing this ? I also have Pernicious Anaemia/ low B12. I was dx with that 12 months ago , and Celiac... and have been having B12 shots regularly , and regular tests for B12 & Folate. Folate until now has been perfect and high.

If I am eating gluten-free now- does that mean that my drop in Folate is not caused by diet but is a genuine folate anaemia ? I mean .... has being Celiac anything to do with this ? After being gluten-free for 12 months I thought I would not get 'worse' re villi damage and absorption.....Why is it worse now than 12 months ago?

Will taking a folate tablet work for me ? If my absorption is poor ? Does anyone else have folate anaemia here ?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



marlene57 Newbie

Hi Georgie,

I also am folate deficient, but have been for a few years. Only found out about the celiac about a year ago. I did go off of the folate supplements, thinking as you do, that I'm better and can get it from foods. I'm back on it because my last test shows I'm still deficient. I attribute it to my intestines not being completely healed yet. I've read that it can take adults 2-3 years to fully heal.

I also have Pernicious Anemia and get injections monthly.

Good luck!

Marlene57

I have just been dx as folate deficient. Has anyone any idea if Celiac could be causing this ? I also have Pernicious Anaemia/ low B12. I was dx with that 12 months ago , and Celiac... and have been having B12 shots regularly , and regular tests for B12 & Folate. Folate until now has been perfect and high.

If I am eating gluten-free now- does that mean that my drop in Folate is not caused by diet but is a genuine folate anaemia ? I mean .... has being Celiac anything to do with this ? After being gluten-free for 12 months I thought I would not get 'worse' re villi damage and absorption.....Why is it worse now than 12 months ago?

Will taking a folate tablet work for me ? If my absorption is poor ? Does anyone else have folate anaemia here ?

grey Explorer

Hi Georgie,

I too have long-standing B12 deficiency (may be PA), and I have a folate def. caused by Celiac Disease; I've been supplementing the B12 with self-injection weekly. I haven't been gluten-free for that long, but my doctor has said it's going to take a while for these vitamins to normalize. Part of it depends on how much damage was done before you went gluten-free how long it takes to heal and studies have shown that your symtoms can be normalized but your gut still damaged.

I was told that one of the things that gets supplemented into non-gluten-free breads and cereals is vitamins - folate being a major one. So, when you changed to a gluten-free diet, maybe you lost some of that supplementaton? Did you change anything else in your diet recently?

-grey

Rachel--24 Collaborator

I have folate deficiency.....no Celiac Disease though....I'm gluten intolerant/leaky gut.

I'll be starting daily B12 shots any day now to be followed with supplementaion of folate. I have tablets now but my Dr. said its not doing me any good w/out the B12. Once I'm on the B12 shots for two weeks I can then start taking the folate.

Apparantly for me...this was caused by mercury toxicity.

georgie Enthusiast

Hi Marlene, So ..the folate tablets get absorbed OK but you are not absorbing folate from your food - is that how it seems ?I am still trying to see why I am 'worse' a year after being gluten free. How much folate do you take a day, and how often do you get re tested ? Is it forever - like Pernicious Anaemia ? Did your Folate Anaemia happen with PA, or come on later after treatment for PA ?

georgie Enthusiast
I too have long-standing B12 deficiency (may be PA), and I have a folate def. caused by Celiac Disease; I've been supplementing the B12 with self-injection weekly. I haven't been gluten-free for that long, but my doctor has said it's going to take a while for these vitamins to normaliz

This is my Big ???, as I have had about 5 Folate tests since being dx as Celiac , and all the Folate was perfect. Its suddenly got WORSE despite me eating gluten-free. So ... it WAS normal, and now its not.

I'll be starting daily B12 shots any day now to be followed with supplementaion of folate. I have tablets now but my Dr. said its not doing me any good w/out the B12. Once I'm on the B12 shots for two weeks I can then start taking the folate.

Apparantly for me...this was caused by mercury toxicity.

Ahhh...I had a huge mercury amalgam crack, and it was removed and tooth capped....about a month ago ....?????

grey Explorer

Sorry, I thought you were also asking if anyone thought folate could be related to celiac. I'm sorry I misinterpreted your question.

I guess I was wondering if you had maybe still some damage to your gut, and for some reason, maybe you had changed something about how you were eating? I'm guessing you'd know if you were pregnant (using up more folate). Folate is also often defic. if you've been drinking a lot.

One other thougt - Or if you had changed a medication? Some affect folate - Have you had your homocysteine level checked lately? That can sometimes cause B12 and folate to drop; I had a migraine med (topomax) mess with my homocysteine levels this way and it probably aided in the dropping of my folate even with the celiac.

I think other anti-seizure meds (a lot of migraine drugs are) can have this affect. Other meds too, but I don't know what kinds (antibiotics, pos.?)

good luck

This is my Big ???, as I have had about 5 Folate tests since being dx as Celiac , and all the Folate was perfect. Its suddenly got WORSE despite me eating gluten-free. So ... it WAS normal, and now its not.

Ahhh...I had a huge mercury amalgam crack, and it was removed and tooth capped....about a month ago ....?????


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,746
    • Most Online (within 30 mins)
      7,748

    Hughesy
    Newest Member
    Hughesy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.