Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Getting Enough Calcium & Vitamins


squirmingitch

Recommended Posts

squirmingitch Veteran

I had a bone scan last year (before I knew I had celiac)& it showed I had very mild osteopenia. Over the years I had tried every type of calcium supplement imaginable & they ALL gave me bad indigestion. Oyster calcium, the chocolate chews, liquid calcium gelcaps, & all the normal calcium pills. In order to increase my calcium intake I began drinking soy milk as it has more calcium than milk or yogurt. Now, since the soy milk has so much iodine in the form of carageenan that's out. And since dairy is to be in limited quantities (if at all) then the calcium from that is not a factor.

I had also tried B vitamins for years but they gave me indigestion also.

So how do you guys make sure you get enough calcium? And for that matter all the other vitamins especially the B's?


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

I

I had a bone scan last year (before I knew I had celiac)& it showed I had very mild osteopenia. Over the years I had tried every type of calcium supplement imaginable & they ALL gave me bad indigestion. Oyster calcium, the chocolate chews, liquid calcium gelcaps, & all the normal calcium pills. In order to increase my calcium intake I began drinking soy milk as it has more calcium than milk or yogurt. Now, since the soy milk has so much iodine in the form of carageenan that's out. And since dairy is to be in limited quantities (if at all) then the calcium from that is not a factor.

I had also tried B vitamins for years but they gave me indigestion also.

So how do you guys make sure you get enough calcium? And for that matter all the other vitamins especially the B's?

I'm just doing a multi-vitamin. I supplement that with a Calcium tab and D-3 drops. I make my own soup stocks in the pressure cooker or slow cooker. I have a weird craving for marrow bone. I think it's good for us.

Jestgar Rising Star

Green leafy vegetables. :)

itchy Rookie

Why do you feel you have to avoid iodine?

Preventing bone disease seems a higher priority than preventing DH. In theory DH will go away on its own once you get the gluten out of your diet and leave enough time.

Calcium and iodine are both essential to health, wheat gluten is not.

Also, I'm curious why you eliminate dairy? I still can't tolerate raw milk, but I eat loads of yogurt, cottage cheese, sour cream, frozen yogurt, and cheese without apparent ill effect.

Finally, are you sure that you are free enough of gluten? Many digestive problems will go away once the guts get a chance to heal. Maybe as you have gluten out of the diet you are not as senstive to those supplements as you once were? Just checking.

itchy Rookie

Hi squirmingitch

Just checked a couple earlier posts, where you mention you eat hash browns and don't eat oatmeal.

Personally I consider hash browns a high risk due to browning agents containing wheat that are used to make them look nice fried up. Without checking labels I wouldn't know, however.

Where I live it is easy to buy wheat free oatmeal. I eat loads of oatmeal without any problems. Others may not be able to tolerate oat products, but most of the literature suggests oatmeal is okay for celiacs, at least most of us. Actually I ate regular oatmeal without any problems previously, suggesting that most commercial oatmeal has quite low contamination with wheat. I prefer not to trust that theory however, now that wheat free oatmeal is easy to find (at least in Canada).

Finally, I have the same reaction to baked goods that you seem to have. I still get indigestion from gluten free baked goods. I prefer to limit these, which is a problem because well meaning friends seem to think that because I eat gluten free that I therefore must want to eat a lot of gluten free baked goods.

pricklypear1971 Community Regular

Why do you feel you have to avoid iodine?

Preventing bone disease seems a higher priority than preventing DH. In theory DH will go away on its own once you get the gluten out of your diet and leave enough time.

Calcium and iodine are both essential to health, wheat gluten is not.

Also, I'm curious why you eliminate dairy? I still can't tolerate raw milk, but I eat loads of yogurt, cottage cheese, sour cream, frozen yogurt, and cheese without apparent ill effect.

Finally, are you sure that you are free enough of gluten? Many digestive problems will go away once the guts get a chance to heal. Maybe as you have gluten out of the diet you are not as senstive to those supplements as you once were? Just checking.

The OP can answer for herself but I will chime in on the desperation to alleviate DH....

Uhm.....when I am in the middle of a DH episode there is absolutely NOTHING more important than making the itching, pain and burning stop. Not to mention the longing to have your brain not constantly occupied by the mental challenge of stopping your hands from scratching. Makes the thrill of shopping for "the perfect" clothes that don't touch or irritate the lesions (btw, such clothes don't exist) even better....

I'm serious when I say this...

If the devil appeared in front of me at 8 pm as those damn sores were filling, when that insatiable itching starts, when I am seriously in danger of losing it....I'd probably agree to any terms offered for a cure. Especially after almost 3 years of incessant torture.

Did I mention the part about cringing when people touch you, especially your excited child? The inability to fully extend your arms because the scabs rip open? What about the wet spots on your clothes where the sores weep?

Dairy is high in iodone. Iodine withdrawal is temporary.

itchy Rookie

Prickly Pear: I didn't mean to minimise the suffering. I've certainly experienced excruciating symptoms of DH and I can well imagine that there are others that have it much, much worse than me, especially judging from the photos on the internet.

Perhaps my observations are coloured by the fact I've never been able to detect a strong response to iodine containing food. I vary my diet quite a lot over time, and one would think that if I got a strong response from iodine containing foods, it would be noticeable. I continue to watch for it.

Which leads to my point that perhaps not everyone should assume they have to get rid of iodine, if it means not dealing with other health issues. I think people should check it out for themselves for their own response.

I don't know that squirmingitch hasn't done that.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

The only way to know is to try...

squirmingitch Veteran

Itchy, ---- What pricklypear said. I couldn't have stated it better myself!

The iodine withdrawal is temporary. And it is in line of a test to see how I react. One has to do these things sometimes. AND I was suffering so badly --- well --- that ole devil prickly mentioned? We would be fast friends that devil & me. I have considered the filet knife at times to peel my skin off. Surely the pain of that would be better than the itching. At least it would be different.

BTW, the hash browns are potatoes. No other ingredients. No browning agents. Nothing but potatoes (peeled of course).

tarnalberry Community Regular

Studies have shown that supplementing magnesium, necessary for the use of calcium to build bone, is even more important in celiacs than calcium. Make sure you're getting ample D as well.

tarnalberry Community Regular

Oh, and weight bearing exercise, and lots of it!

squirmingitch Veteran

Thank you everyone! Ah yes, the leafy greens of course. I did know that but couldn't think of it. Chalk it up to temporary insanity due to intense itching & hunger. This stuff is making me stupid. But I know you've all been there, done that & it's nice to have you to turn to to keep me straight. And I do hope to discover down the road that I can take supplements because the problem with them stemmed from the celiac disease.

The magnesium is a good tip. I didn't know that.

I have long been a fan of weight bearing exercise. Tarnalberry, I see you teach yoga --- I taught ballet & practice the exercises throughout the day in the way I move doing anything around the house. Also love to walk with the dog which is a great weight bearing exercise.

I made a run to the store this morning & couldn't find cream of buckwheat so will have to order it online. Picked up some refried beans, stocked up on more fruit & fruit juices, unsalted nuts ( not many unsalted choices there) & picked up 6 Larabars, 2 of which went into the glove compartment for those desperate snacks away from home. Was getting shaky so I inhaled one while putting away groceries & YUM, YUM, YUM!!!!!! They are GOOOOOOD!

Threw myself a fine pity party last week at one point but I suppose you guys are familiar with that too. Got that over with & am ready to move forward with renewed strength.

Will have to get the Udi's bread online too as locally only Schar is available.

I think I'll be able to make the next few days without getting hungry. Wooooooo Hoooooo!!!! :D

pricklypear1971 Community Regular

If you can find Kind+ bars try one.

IMO better than Lara.

squirmingitch Veteran

I'll look for them online with everything else on my list. Thanks!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,921
    • Most Online (within 30 mins)
      7,748

    Linda Higgs
    Newest Member
    Linda Higgs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Ginger38, Have you been checked for nutritional deficiencies, besides iron?   Celiac disease causes inflammation which results in nutritional deficiencies.   Iron needs Thiamine and the other B vitamins to make new red blood cells.   Iodine and thiamine deficiencies affect the thyroid.  The thyroid is one organ that uses lots of thiamine.   Vitamin D deficiency leads to hormonal problems, including menstrual problems.  Vitamin D needs Thiamine to activate it.   Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine.  Consumption of any  foods high in carbohydrates can cause a drop in thiamine.  This is called high calorie malnutrition. Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies.  There's eight B vitamins that all work together in concert.  They are water soluble.  They can be hard to absorb by inflamed intestines.  Vitamin A can improve acne. I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C.  Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares. Replenishing your vitamin and mineral stores will help heal and feel better faster.  Talk to your nutritionist and doctor about supplementing. Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines. @Alibu and I were just discussing diagnosis without obvious villus damage here.   This study followed people who showed no or little villi damage at first....they accrued more damage over time. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/
    • Ginger38
      Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise.  I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 
    • knitty kitty
      @Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation." They used 100 mg of thiamine three times a day.  They don't say which kind of thiamine was used.  Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO.  Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.   The old "gold standard" diagnosis is changing.  It must be confusing for doctors as well.  I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves. Keep us posted on your progress!   P.S. here's another link.... https://pubmed.ncbi.nlm.nih.gov/39642136/
    • Alibu
      @knitty kitty I see, thank you!!  Yes, basically the biopsy just said "normal villous architecture."  It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac.  It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy, so how does this system make any sense?? I have had an A1c and it's normal.  I do know that I have insulin resistance, however, so there's that. Wow, thank you for all this information!!!  I have a lot of reading to do!
    • trents
      That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon. But there is the option of going for the gluten challenge in a more robust way and getting retested.
×
×
  • Create New...