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Dealing With It..

lisaemu

By lisaemu
in Coping with Celiac Disease

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lisaemu Contributor
lisaemu
Posted

How do you deal with the gluten-free diet, and the multiple other intolances most of you seem to have? Im glad that knocking out gluten seems to make me feel better so im sticking with the diet...but my stomach seems to be so sensitive that no matter what I eat, it hurts. I know in the beginning the stomach needs to heal and people suggest eating a very basic and bland diet...so right now my diet mostly consists of lean meat, fruit, and vegetables. occassionaly i might something else in like gluten free cereal, rice chips, or yogurt..but my stomach ends up so bloated and i feel so sick. i cant figure out if im having problems with dairy, nuts, corn, rice, potatoes..sometimes it feels like air is enough to make me feel like crap! im hopefully going to the dr soon (tho they usually dont seem to help) and am going to do a very basic diet..im not tryin to rant, im just wondering how you deal mentally with not being able to have so many things. im to the point where i just dont want to eat anything, because my body doesnt seem to agree with anything. or i start craving things i never use to eat (ive always been a pretty healthy eater, and the gluten-free diet isnt that much of a stretch for me) just because i know i cant have em now. ugh.

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Carriefaith Enthusiast
Carriefaith
Posted

Many people with celiac disease have an intolerance to lactose until their villi heal. The enzyme that digests lactose is located in the tips of the villi. Therefore, when the villi are damaged, some lactose can go undigested and cause problems. Maybe try eliminating dairy for awhile and see how you feel. If you decide to eliminate dairy, I recommend drinking orange juice fortified with calcium and eating foods with vitamin D, such as salmon or shrimp.

Guest cassidy
Guest cassidy
Posted

Sounds like you are in a rough patch that most of us hit. In the beginning it is hard when everything seems to make you feel bad. I was doing really well for about 2 months and then things like tomatoes and potatoes started making my stomach hurt again. Every time something bothered me I put it on a list. When I'm feeling better I'm going to try to re-introduce some of the foods and see if I can determine if they really bother me or if my stomach was just upset in general.

The health food store may have some supplements that help you. Digestive enzymes are very good. Things like aloe help calm the stomach. It might be worth a try to see if they can help your stomach calm down.

When I'm having times like this I definitely have days when I feel sorry for myself. I hate doing it, but sometimes it gets me down and I don't know how to stop that. Those days don't usually last long. Eventually I start thinking about how much better I feel than when I was eating gluten. I remind myself how far I have come and how much I have improved. Those thoughts kick in and I realize that I'm very thankful that I have figured out what is wrong and it is fixable.

Don't be too hard on yourself. We all have ups and downs. Unfortunately, there isn't an easy solution, but I'm sure you will adjust and things will start getting better. Try to do something nice for yourself.

YankeeDB Contributor
YankeeDB
Posted

My attitude towards food has changed. More and more I'm gravitating towards strictly meat, fish, vegetables and fruits and avoiding grains. I'm learning to make these food choices more enjoyable. I'm starting to look at eating as something that is enjoyable but NOT entertainment which is how it is often viewed in Western society. Unfortunately, most socializing revolves around food but I'm learning to deal with that too. There are so many things in life to enjoy, food being just one of them. I've decided I can be a bit more indulgent on the other pleasures of life since my food options are limited. That sounded kind of hedonistic! Not really, I just enjoy my hobbies more and appreciate just being alive (especially since I lost a brother (age 56) to cancer last September.

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

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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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    • Scott Adams
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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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