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Anyone Else Have A B12 & Iron Deficiency?


californiagirl

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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,


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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

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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