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souzahanson

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souzahanson Apprentice
souzahanson
Posted

Wow, I can't believe that many of the "topic" products out there aren't gluten free. I've been having major joint and body pain issues requiring current prednisone use. My MD feels that it is related to my celiac disease. I've just returned from the health store and have found out many of my personal care products may be the culprit. I also went through my fridge after reviewing this site for contamination ingredients and I no longer have any condiments. I've changed all my personal care products today to Tom's of Maine and Kiss My Face among other things. I knew celiac dz was going to be a life change after my 2001 diagnosis, but I didn't realize how much of a change it would be.

I'll be going for an antigliadian(?) test tomorrow. I will also be having a GI consult on 7/10 and plan to go for allergy and food sensitivity testing soon. I've also added GNC's MEGA MEN JOINT supplement to my diet. My alcohol drinks of choice are Redbridge and New Grist beer, it used to be captains and coke.

It's almost impossible to be 100% gluten-free free, but I'm going for it. I've been feeling so horrible lately with complete lack of energy or ambition. I hope there's nothing else wrong with me. Any help would be appreciated at this point.

If this post isn't in the right place maybe the moderator will move it to the proper place. I'm new to the site and it will take some time getting familiar with where everything should be posted.

Chris

2001 celiac dz via colonoscopy

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ravenwoodglass Mentor
ravenwoodglass
Posted

There are a couple of companies that label well for gluten ingredients in toiletries. Suave is a good one and also Dove. Giovanni makes some great hair care products but I haven't checked on their skin line. Hopefully someone who uses Shave Creams will post about those. One of the most risky things in these products is vitamin E which is usually derived from either wheat or soy. If the tocepheral has a D- in front of it that variety is safe. Usually I see that in vitamins though so I just avoid anything with added vitamin E.

It can take a while to get the 'hang' of things but you will. You also may want to consider getting a for sure gluten free sublingual B12. That will help out your nervous system and will also aid in energy and possibly mood. Even if your levels measure okay on blood tests that does not mean your body is able to form it and utilize it. Blood levels can take a long time to drop significantly enough for it to show up and it is not toxic in high doses so it won't do you any harm.

Welcome to the board and I hope you are feeling a lot better soon.

Lockheed Apprentice
Lockheed
Posted
There are a couple of companies that label well for gluten ingredients in toiletries. Suave is a good one and also Dove. Giovanni makes some great hair care products but I haven't checked on their skin line. Hopefully someone who uses Shave Creams will post about those. One of the most risky things in these products is vitamin E which is usually derived from either wheat or soy. If the tocepheral has a D- in front of it that variety is safe. Usually I see that in vitamins though so I just avoid anything with added vitamin E.

It can take a while to get the 'hang' of things but you will. You also may want to consider getting a for sure gluten free sublingual B12. That will help out your nervous system and will also aid in energy and possibly mood. Even if your levels measure okay on blood tests that does not mean your body is able to form it and utilize it. Blood levels can take a long time to drop significantly enough for it to show up and it is not toxic in high doses so it won't do you any harm.

Welcome to the board and I hope you are feeling a lot better soon.

Ack! I had no idea about the Vit E and I used to do clinical research trials on nutritional supplementation (yup, I'm one of those dorks) Back to reading for me then!

jerseyangel Proficient
jerseyangel
Posted
Ack! I had no idea about the Vit E and I used to do clinical research trials on nutritional supplementation (yup, I'm one of those dorks) Back to reading for me then!

Oh yes! Vitamin E/tocopherols have gotten me several times! :angry: I call companies quite often, and the vast majority of them can't tell me the source of the Vitamin E--even the ones who state that the product is question is gluten-free. It's frustrating, and since I'm so sensitive (with very few exceptions) I simply avoid anything with Vitamin E/tocopherols.

Chris,

It sounds to me as if you either are getting small amounts of gluten getting in somehow, or possibly you have uncovered additional food intolerances after going gluten-free.

Do you still eat dairy, soy and corn? If so, it may be worth a try cutting them out (one at a time) for a week or so and see if that makes a difference.

Lockheed Apprentice
Lockheed
Posted

Well and I'm hesitant to bring this point up, but is there a possibility that you might be somewhat depressed? It's perfectly normal to be depressed after losing a food group (or two or three) and making a complete lifestyle change.

Now I have a new project this weekend.. to check on all the vit e stuff. I really have a much larger issue with soy than gluten (and really I have a bigger sensitivity to wheat than I do to gluten.. don't ask.. it's a long story).

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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