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

Anyone Else Have A B12 & Iron Deficiency?


californiagirl

Recommended Posts

californiagirl Newbie

First of all I'd like to thank everyone here for helping me with all of your suggestions and advice. It has helped me sooo much this last week. I began having noticable symptoms (that interfered with my daily routine) March of last year. My Mother was diagnosed with pancreatic cancer the month prior and her Doctors gave her 11 weeks. So during that time I blew my symptoms off as stress related. My Mother passed away in December and I continued getting worse. I went to see my GP and he said I had Gerd,he gave me some meds and no improvment. I began keeping a food diary. In mid May everything I ate made me sick. Heartburn, severe cramping & diarrhea, fatigue. Last week I had a colonoscopy, bloodwork, barrium test, ultrasound. I have to wait for the blood work 10 days. But my doctor did say that he thought I had Celiac and that I had flattening of the villi. In the first round of bloodwork I was iron deficient and very low in B12 which he said was unusual for a woman. I'm not sure what a lot of that means. Does anyone else have this? I did start gluten-free Saturday. It's really hard,overwhelming at first. So many foods with gluten. Today is the first day I have felt somewhat good in a very long time. But I'm still so tired, very little energy. Thanks again,


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Welcome to the board!

I am sorry for the loss of your mother. I know that is a very hard thing to deal with no matter how old you are. I am glad you did not pass off your health problems as stress, as so many people tend to do. THe gluten-free diet can be VERY overwhelming at first, just hang in there it does get better. Once you really begin to feel a difference in your health it will ALL be worth it!

Browse around the site, there are a TON of helpful links on the site about gluten-free foods, safe places to eat, etc...

I will go ahead and give you a few links:

Open Original Shared Link

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

I am not sure about the resturants in your area but here are some links of places that offer a gluten-free menu and is posted on their website

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

oreyes Newbie

Californiagirl,

Heartfelt comfort for the loss of your mother.

You asked about a deficiency of B12 and iron. My celiac diease was misdiagnosed for seven years and I experieced both of those plus severe anemia. I received three transfusions but still could not get my iron levels up. My stomach wouldn't tolerate iron tablets so I finally had to have an iron infusion. Since then, my levels have stayed pretty normal. With all the diarrhea, my system was absorbing very little nutrition and I'm wondering if you've not experienced the same problem. I've been gluten free for three years now and except for one bad bout that lasted for a couple of month this spring, I've felt great.

Hang in there and don't become discouraged. In the three years that I've been diagnosed there have been so many improvements in food products and restaurants that are gluten-free friendly. I believe this is a diease that's just being discovered by many physicians here in the states. As stated in the previous e-mail, I think you'll find a lot of information on this site and just talking with others.

Take care and good luck. :rolleyes: ............Judy

oreyes Newbie
:( Scuse the mispelling of the word "disease"...and I did it twice!! Judy
Meenucat Newbie

I am *not* Celiac, apparantly, but I *do* have a B12 Deficiency - My doctors are not sure what is the cause of the defiency and I have had a normal MRI (of head), Colonoscopy, and Endoscopy...I'm in the process of trying to find out what the heck is going on with my body right now...(I do not have Pernicious Anaemia)

A low B12 level is when your body doesn't absorb B12 either through your intestines or bowel - The Ileum (part of the small intestine) is the part that is effected when you have Celiac, I believe (someone else may want to jump in and clarify this for me)...You may need to get B12 shots or maybe your levels will improve when you are further along on your gluten-free diet - Low B12 with Celiac means that your body is not absorbing certain vitamins/minerals (malabsorbtion) - Good luck to you and I hope you start to feel better soon :D

lovegrov Collaborator

Both of these deficiencies are QUITE common in people with untreated celiac because you haven't been absorbing things. It's very important to get both back up.

richard

Archived

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

  • 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. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    2. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    3. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,316
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    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

    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
×
×
  • 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.