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How Do You Keep Going When You're Not Getting Better?

FootballFanatic

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FootballFanatic Contributor
FootballFanatic
Posted

First of all, I am not ready to try and eliminate soy yet because I already only have 4 meals that I switch between and a few snacks, so I would just shrivel away if I eliminated soy at this point, PLUS, I have so many friends who didn't have to eliminate anything except gluten and temporary dairy/fatty foods...they just took a LONG time to heal.

But I'm getting SO SICK AND TIRED of hurting or feeling nauseous or having such high anxiety.

If you've been through this what got you through? I'm getting really frustrated, it is such a HUGE sacrifice to go gluten free and get nothing from it.

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MNBeth Explorer
MNBeth
Posted

Boy, I can relate. I'm so sorry you're having such a hard time. My son and I just got our Enterolab results back a couple of weeks ago, and I'm feeling some of the same already. It's so hard to keep pressing on when I still feel crummy so much of the time, and the pressure to feed my family - especially my newly gluten-free 15 yo son - gets overwhelming.

It helps me to read and reread the comments of those who took a long time to feel better. I haven't been going nearly as long as you have, though. Still, I need to keep being reminded that not feeling better doesn't mean this is the wrong thing for us.

I'm right where you are on the soy, too. We reluctantly went off casein a week or so after the gluten, but soy? We depend more on Asian food than ever - seems like we'd be down to meat and potatoes w/o gluten-free soy sauce.

I wish I had some better advice, but anyway, hang in there and know you're doing the right thing for your body by going gluten free.

JNBunnie1 Community Regular
JNBunnie1
Posted

It sounds to me like you need some more nutrients and fat in your diet, especially with the joint issues. How do you feel when you eat avocados? I make guacamole almost every day when I'm not feeling well, the fats in avocado really help my stomach feel better. You can use gluten-free chips or carrots and cucumbers or whatever other veggies you like for dipping. I put my chopped up avocado on scrambled eggs and add salsa, sounds wierd but it's yummy. And are you taking a vit B supplement? I started feeling much better when I started that. I usually eat eggs for dinner instead of breakfast, too, because my stomach only tolerates certain foods in the morning, very strange.

FootballFanatic Contributor
FootballFanatic
Posted
  • Author

It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.

cyberprof Enthusiast
cyberprof
Posted

Sorry you're not feeling better.

Couple ideas:

If you're still on medication, are you sure it's gluten free?

Are you sure that your vitamins and toiletries are gluten free?

Are you taking Vitamin B12 (sub-lingual)? It might really help...

Have you had your thyroid checked, especially autoimmune thyroid?

Have you been checked for diabetes?

Have you tried a true elimination diet?

I know you don't want to go off soy, but you could try it for a few days to see if it is the problem. If it is, wouldn't it be better to find out than to suffer more and more?

Good luck and hope you're better soon.

~Laura

JNBunnie1 Community Regular
JNBunnie1
Posted
It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.

Ok, just kidding. Maybe use olive oil to lightly saute all your greens. Get some decent coconut oil to use for baking, and sweet potato tastes really good sauteed in coconut oil. Mashed potatoes with ground hamburger, and use the hamburger drippings to moisten the potato, that will up your calorie count and it tastes yummy.

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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

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    • 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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