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Need Help, Still Feeling Yucky

celiaccecilia

By celiaccecilia
in Coping with Celiac Disease

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celiaccecilia Newbie
celiaccecilia
Posted

Hi All,

I am new to the board. I was diagnosed by a positive endoscopy in August 2005. It has been a real rollercoaster for me. Shortly after going on the diet I felt fabulous. (no headaches, body aches, stomach aches, big D etc.). Then I would feel gross for a few weeks and then feel good for awhile and so forth. I have not felt good now for about 3-4 weeks and do not know what I am doing wrong. I have switched all my products...shampoos, etc. to gluten free to the best of my knowledge. I only eat things on the gluten free list I have, and even some of those I don't eat because they make me sick. Is it normal to feel this way while still being so strict on the diet? I couldn't get 2 feet from the toilet for about 12 hours yesterday. :o I have lost about 10 pounds in the last few months...don't know if that is because I don't dare eat or cause I don't digest. Went to the GI a few days ago, not too helpful, though I found out my iron level is about 50% what it should be. He wants to give me a blood transfusion in a few weeks if it doesn't come up. What do you think about transfusions?

What can I expect with this diet, disease? Could I have more allergies? Do you think I should keep doing what I am doing? Will I feel better soon? Is this normal? Would love to feel better again. Thanks for any replies.

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Felidae Enthusiast
Felidae
Posted

Have you tried eliminating dairy or soy. I was like you I felt great for awhile and then not so good and back on the Immodium again. But I have been better since eliminating dairy. I tried some cheese again last night for the first time in about a month and I was back on the toilet for this morning.

celiaccecilia Newbie
celiaccecilia
Posted
  • Author
Have you tried eliminating dairy or soy.

Yes, I have eliminated dairy, but I haven't eliminated soy yet. Can eating dairy/soy make you have headaches, body aches, etc?

Rusla Enthusiast
Rusla
Posted
Yes, I have eliminated dairy, but I haven't eliminated soy yet. Can eating dairy/soy make you have headaches, body aches, etc?

You could have sensitivities or allergies to dairy and soy and they can also cause those.You may be getting glutened and not know from where. I have been glutened yesterday and I don't even know how. I do know because of the reaction and the DH that I was glutened. I have not ate anything with wheat or gluten. So, you may be getting glutened by accident or the dairy and/or soy thing.

celiaccecilia Newbie
celiaccecilia
Posted
  • Author
You could have sensitivities or allergies to dairy and soy and they can also cause those.You may be getting glutened and not know from where. I have been glutened yesterday and I don't even know how. I do know because of the reaction and the DH that I was glutened. I have not ate anything with wheat or gluten. So, you may be getting glutened by accident or the dairy and/or soy thing.

Yes, I could be getting glutened, as my family still eats lots of wheat. I will have to try eliminating soy and see if that helps.

Thanks.

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

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

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      Contact them.
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