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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.