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7 Months And Feeling Bummed

peanjmiles

By peanjmiles
in Coping with Celiac Disease

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peanjmiles Newbie
peanjmiles
Posted

Hello Everyone!

This is my first posting here but I have been reading this forum for months. Well my brief history is that I was diagnosed in February of 2010 by both biopsy and blood work. I started a gluten free diet right away. In June 2010 I was diagnosed with Hashimoto and Polycystic Ovary . I had so many questions so I went to a nutritionist who was not much help and I think I actually new more about Celiac than her.

So now I feel a little bit better than I was but I am still not feeling completely normal. I get tired easy and have gained 15 pounds. I have trouble with what I can eat and cross contamination. My doctor said I was probably very sensitive because the blood work results were very high. I realized that I can

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i-geek Rookie
i-geek
Posted

In the USA, maltodextrin is normally made from corn and is safe unless otherwise specified. If it is from wheat, that HAS to be labeled according to federal law because wheat is one of the 8 major allergens.

"Natural flavorings" are another thing altogether. They may be perfectly safe, or they may include barley malt, which doesn't have to be specified on the label at all because barley isn't a Big 8 allergen. When in doubt, either contact the company directly or avoid the item.

elk Rookie
elk
Posted

Both maltodextrin and natural flavorings can be aliases for MSG, which can cause a bunch of problems. The best thing to do (IMHO) is to just stick with whole/real foods. I used to hate cooking, but I really enjoy it now. It takes a bit to get used to, but it's really just a matter of creating new habits.

As far as thyroid, it is really hard to get right and you could be having issues with that. What kind of medication are you taking? Have you tried Armour? Make sure your doctor is working closely with you on this and isn't getting tunnel vision with with what he's treating you for (celiacs AND hashi's AND...). I would also suggest having your cortisol levels checked to make sure your adrenal glands are functioning properly. A lot of people on thyroid meds break up thir doses throughout the day, especially if they're taking Armour, so that might be something to look into. Always get copies of your lab results so YOU can see what's going on.

As far as what to eat, you can make anything with whole foods: grassfed meats, eggs, legumes, rice, organic fruits and veggies, evo, coconut oil, butter (real butter made with cream & salt only), herbs, spices. If you buy anything processed, make sure the ingredients are actual food, i.e., Peanut Butter should only be peanuts and maybe salt, tomato paste should only be tomatoes, cheese should have minimal ingredients and not food coloring or "??" to "prevent caking", etc.

Wish I could offer insight on the celiacs, but I'm new to that. By eliminating processed foods, you pretty much get out of reading labels. :P

sb2178 Enthusiast
sb2178
Posted

rash... lupus? sorry to suggest it, but autoimmune diseases can cluster.

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  • Posts

    • 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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