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Thank You-heard From Dr

k2626

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k2626 Explorer
k2626
Posted

Last week I posted about fatigue, abdominal cramps, brain fog, dizzy spells and bone pain (which was the worst) Prior to my post, I seeked another opinion from a new dr (current one thought it was "stress or all in my head)...who tested me for many many things (thankfully) At anyrate, while waiting for my results I posted on this board, thinking I could have Celiac but panicked it was bone cancer since my bone pain was so bad. It was suggested by someone that my Aciphex (for my acid) may be the cause of my problems....I had been on it over yr, when one is typically on it for 8 wks. At anyrate, that led me to more research. What i found was Aciphex and other PPI's does not allow your body to absorb Vitamin D and B 12. So when I found that out, I researched Vitamin D deficiencies and found comfort that it COULD be that is what I am going through. I received a msg tonight from my Dr that in fact I am low in D and all other labs were fine. So to let you all know...I have gone down to 98 pds (I am 5'5), my hair has thinned, I have been dizzy, fatigued, feet have been "buzzing" and the worst.. have had SUCH bad bone pain and body pains-all due to lack of D. To all woman out there-PLEASE take a supplement and if you are on PPI's BE CAREFUL. Vitamin D can also lead to breast cancer. I believe Celiacs can also lead to a deficiency in D

At anyrate, thank you for easing my mind.......

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Ursa Major Collaborator
Ursa Major
Posted

I am glad you are getting some answers and that we were of some help. Sometimes coming here to help with brainstorming is a great idea, because somebody might think of something you would never even consider! That is so great about this forum........ many people can figure out things one person alone can't.

ravenwoodglass Mentor
ravenwoodglass
Posted

So it sounds like your doctor think everything is being caused by the Aciphex. However there was a reason you were on it for a year. I am assuming that you were having stomach pain before you began taking it. Did your doctor do a celiac panel? Please don't feel that you definately don't have celiac because of these findings. It will be great if the issues are all due to the side effects of the antacid and I am not for sure saying that they are not but do not write off celiac until you have your vitamin levels back up and they stay there on their own with your symptoms being resolved. Are you still on a PPI? If so you need to find out for sure why you need one.

k2626 Explorer
k2626
Posted
  • Author

Well he did say Aciphex does not allow our body to absorb D and I think I read B 12 too. I had been on it on and off for a yr vs 8wks...this was not even the Dr that prescribed it.

I have major acid issues to the point that I get extreme sharp shooting chest pains due to my esp spasms...feels like a heart attack. I am off the PPI now. I use to pop advil like it was going out of style, I attribute that to my stomach issues. However, I think I will try a gluten free diet for a couple wks as those stomach pains are still a mystery and they hurt SO bad, so bad I went to the hospital last week.... have had them on and off for 6 yrs For being 33 yrs old, feel like I am 90!

This Dr did do a Celiac panel, but it came back okay?

nora-n Rookie
nora-n
Posted

My daughter had bad stomach pains for years, then tried gluten-free and it imptoved immediately, went milk-free too as she reacts violenly to it, then went back on gluten for a biopsy and tests which were negative. But she did get a positive diagnosis after all because of several other things that fit with celiac, plus they could see during the endoscopy that the gut looked celiac. Plus the improvemet off gluten and that she got ill again when back on gluten and well again off gluten. Even her graves antibodies disappeared off gluten.

nora

mftnchn Explorer
mftnchn
Posted

I have been reading a lot about Vitamin D and it is an extremely important nutrient. If you improve with just supplementing it, then great.

However, there could be other things going on to explain your symptoms and low Vitamin D is a piece of the picture only.

Besides celiac, you could have an infection going on like lyme disease (which your symptoms all fit as well).

linda7276 Newbie
linda7276
Posted
Last week I posted about fatigue, abdominal cramps, brain fog, dizzy spells and bone pain (which was the worst) Prior to my post, I seeked another opinion from a new dr (current one thought it was "stress or all in my head)...who tested me for many many things (thankfully) At anyrate, while waiting for my results I posted on this board, thinking I could have Celiac but panicked it was bone cancer since my bone pain was so bad. It was suggested by someone that my Aciphex (for my acid) may be the cause of my problems....I had been on it over yr, when one is typically on it for 8 wks. At anyrate, that led me to more research. What i found was Aciphex and other PPI's does not allow your body to absorb Vitamin D and B 12. So when I found that out, I researched Vitamin D deficiencies and found comfort that it COULD be that is what I am going through. I received a msg tonight from my Dr that in fact I am low in D and all other labs were fine. So to let you all know...I have gone down to 98 pds (I am 5'5), my hair has thinned, I have been dizzy, fatigued, feet have been "buzzing" and the worst.. have had SUCH bad bone pain and body pains-all due to lack of D. To all woman out there-PLEASE take a supplement and if you are on PPI's BE CAREFUL. Vitamin D can also lead to breast cancer. I believe Celiacs can also lead to a deficiency in D

At anyrate, thank you for easing my mind.......

Thank you for this very important information on low Vitamin D. My mother is on Aciphex and complains about her arthritis all the time. I am sure she is gluten sensitive, she even thinks so, but says she's too old to change all of those things....grrrrr... I am going to pass this on to her...:)

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Ursa Major Collaborator
Ursa Major
Posted

When I replied last night I was tired and not thinking clearly. I completely agree that the reason you were taking the Aciphex to begin with could very well be celiac disease. I get terrible reflux from gluten. I also went to the hospital before, thinking I had a heart attack because of the awful pain.

They sent me home, telling me that my heart was fine, that it was 'only severe bowel and stomach cramps' and there was nothing wrong with me. Right, I was in such pain I wanted to die (I am not kidding, I was praying, asking God to let me die, that is how bad it was), but there was nothing wrong with me. Idiots.

I haven't had those problems since going gluten-free, as well as eliminating all the other foods I figured out I am intolerant to (with an elimination diet over several months).

Lisa Mentor
Lisa
Posted

There was a study submitted by a member here stating that long term use of antacid's prohibited the absorption of Vit D and specifically B-12. Wish I could put my hands on it, but it came from Nancy, I believe in her cardiac file.

ding,ding,ding....post 5,000 (awaiting the green slime) :o:lol:

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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