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

Am I Eating Gluten Or...?


SteveW

Recommended Posts

SteveW Rookie

Hi

Finally after 3 months of tests and a positive Celiac diagnoses I've gone 100% gluten-free. For the past 3 weeks I have felt a little better. But this week I feel myself getting worse again :( ?

The only thing I've added to my very limited diet is 2 plain spices that are suppose to be gluten-free-and a calcium sup(Doctors orders).

I thinks it's the Calcium supplements that are the culprit. They are labeled Wheat,Rye,Oat and Gluten Free-but my stomach goes ballistic as soon as I swallow them(tried 3 kinds). I won't go into what happens next but let's ust say it was my worse bathroom issue ever. My intestinal attacks were never that bad before.

So do you think there


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

well, after checking with both the spice companies and the calcium manufacturer, it could just be the calcium. it can be hard on your stomach - particularly if you take it on an empty one. you don't say which end of the spectrum the "worst bathroom issue ever" was, but even in healthy individuals, calcium supplements can be constipating. (ironically, magnesium has the opposite effect, and almost no calcium supplements have enough magnesium, which is a shame for celiacs, because one of the studies I came across recently showed that magnesium is even more important - bone density wise - than calcium for celiacs.)

just a couple thoughts...

tiffany

SteveW Rookie
you don't say which end of the spectrum the "worst bathroom issue ever" was,

It was diarrhea,stomach pains that went on for 4 hours.

There was no Magnesium listed in the Calcium sup.

Thanks for your reply

  • 2 weeks later...
dclark519 Newbie

Hi from what I understand, calcium citrate is supposed to be easy on the stomach rather than just calcium, and also the frustration of this diet and disease can cause anxiety which as you probably know, can make a serious bathroom trip. My dietician said this is the 2nd hardest diet in the world. It can take 6 mos. to a year to heal from the lifelong damage. Are you keeping a food diary? good luck!

midnightjewel40 Newbie
;) Hi steve i have the same problems with certain vitamins maybe you should just increase you calcium intack by foods like sardines and tuna any fish with edable bones brocoli etc and make sure you have some dairy products like cheese i have these (i cant drink milk as it reacts with me) hope this helps :(
natalieb Rookie

That is so weird because I too just had a relapse with my celiac and I swear that the calcium was to blame. I have called the drug company to have them tell me if gluten is in it but gee...what a surprise...the girl on the other end didn't know, she would get back to me. It has been over a week. Needless to say, I have not taken the calcium and started taking the liquid coral calcium that has been in my firdge and I feel fine. I t also has all the magnesium you need. I read the label on the coral calcium and the ingredients are clear cut. That bottle of calcium had ingredients that confused me and obviously the company. Next time your in a healthfood store, (a good health food store), see if they have the liquid coral calcium. I'm not sick after going back on it and ditching the pills. It is very pricey though thats the only thing. I would ask my doc first before doing that however. Take care. I know how you feel.

  • 2 months later...
wildones Apprentice
Hi from what I understand, calcium citrate is supposed to be easy on the stomach rather than just calcium,  and also the frustration of this diet and disease can cause anxiety which as you probably know, can make a serious bathroom trip.

I don't think you were saying that the stress and anxiety could be causing/exaserbating his "bathroom problems" , but it sounded that way in your post. All of us know how frustrating that is to hear :angry: , when you know that it is a reaction to gluten or another food that is causing the problem !!!

Lorraine


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



Celiac.com Sponsor (A8-M):



nthei Apprentice

Hello SteveW! I just want you to know you are not alone. I'm a newbee, two weeks in, I'm doing my very very best to be gluten-free. I believe I'm doing a good job. I felt better for the first week, then I have had small episodes(mostly flatulence(gee that is embarassing), nothing as compared to what I would get eating gluten, but I must say I do get frustrated, scared and confused and wonder, "am I getting cross contamination or something that I just don't realize contains gluten" or is it that it just takes some time for my body to completely (or as close to complete as I can get be symptom free). Seems like every time I turn around, oops that has gluten in it or it's cross contaminated. When I call manufactuterers, they swear up and down that their product, itself, is gluten-free, BUT they can't guarantee that their packing plant, shipping co., etc. doesn't have wheat flying around?????? VERY FRUSTRATING My doctor tells me that I'm may get that no matter what because they know I'm a paralegal (which I don't advertise, however I keep the same hours they do, so when they call me back, they get me at the firm). I guess it would make sense, seeing as how I'm 35 and have ate gluten all this time and had years upon years of the Oh, it's stress, IBS, ulcers, etc, etc., diagnoses. I guess I shouldn't be expecting too much for two weeks. I wish you good luck and hope for speedy relief of your symptoms. I know this isn't much in the way of advice, but know you are not alone. Your post actually helps me, because I have had these same thoughts.

We are going make it and feel better! Keep the faith!

Have a great day!

Christine

SteveW Rookie

Thanks Christine

Wow I forgot about this post :lol:

3 months go by fast!

Just to update I still can't take Cal sups in pill form. I taking Coral calcium and seem to be tolerating it.

I just found out that in addition to Celiac Sprue I also have a 90% chance I have Crohns :angry:

Blood work shows 85% chance of IBD-Crohns and that with a biopsy taken during my colonoscopy brings it around 90%.Lucky me.

This would explain not getting better on the diet alone. I

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      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. 
    • trents
×
×
  • 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.