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Anyone Else Have A B12 & Iron Deficiency?

californiagirl

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californiagirl Newbie
californiagirl
Posted

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
Guest jhmom
Posted

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
oreyes
Posted

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

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
lovegrov
Posted

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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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