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Help! Still Not Feeling Better!

klahusen

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klahusen Newbie
klahusen
Posted

I was diagnosed with Celiac Disease in March of 2011 after loosing 25 pounds with all other symptoms, gas, bloating, chronic constipation. Since then I have followed a very strict gluten free diet. Over the past month I have been experiencing the same constipation and this past week has been followed by diarrhoea and constipation as well as more fatigue, weight loss and head aches. I have not been contaminated with gluten and am very frustrated as to what I must be eating that is causing this gluten reaction.

Any suggestions?! Any comments will help! I have been trying various elimination diets but so far feel helpless!

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GFreeMO Proficient
GFreeMO
Posted

I'm sorry that you are not feeling well. I think as time goes on, we become more and more sensitive to gluten. Are you eating a lot of gluten free processed foods? A lot of those products make many of us really sick. Also, what about another sensitivity such as dairy or soy. I've had to give up all of those things to feel better.

AVR1962 Collaborator
AVR1962
Posted

This is the tricky thing, without looking at everything you have been consuming it is hard to say. Assuming your gluten free diet is tight and you have read all your labels (only gluten-free chapstick, cooking spray, etc), your household is clean (meaning no crumbs), and you have been avoiding fast foods, canned, frozen and boxed foods then I would look at other options that could be causing you issues. I know soy gives some issues. I cannot eat high fructose as I have the same issues with it that I do with gluten.

Don't give up, I was in your shoes not long ago. I found I was making lots of mistakes. Once it really got into my head that anything I put in my mouth was potentially harming I took a very different view on what I was consuming.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was diagnosed with Celiac Disease in March of 2011 after loosing 25 pounds with all other symptoms, gas, bloating, chronic constipation. Since then I have followed a very strict gluten free diet. Over the past month I have been experiencing the same constipation and this past week has been followed by diarrhoea and constipation as well as more fatigue, weight loss and head aches. I have not been contaminated with gluten and am very frustrated as to what I must be eating that is causing this gluten reaction.

Any suggestions?! Any comments will help! I have been trying various elimination diets but so far feel helpless!

So what are you eating? Did you make your house gluten-free or at least change out the things most likely to cause cross contamination? (toaster, collander, scracted non-stick cookware, etc) Do you have pets or kids or a significant other that still eats gluten?

Skylark Collaborator
Skylark
Posted

Have you tried eliminating dairy (casein in particular) as strictly as gluten?

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

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      @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
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      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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      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?
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