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

By georgie
in Related Issues & Disorders

Recommended Posts

georgie Enthusiast
georgie
Posted

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
marlene57
Posted

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
grey
Posted

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
Rachel--24
Posted

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
georgie
Posted
  • Author

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
georgie
Posted
  • Author
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
grey
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.