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Newly Diagnosed

Jill0711

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Jill0711 Rookie
Jill0711
Posted

Hello everyone! I wanted to jump in and say hi. I was diagnosed a week ago tomorrow so this is all relatively new to me. I consider myself blessed because I was only miserable for six months before my diagnosis. I know others waited much longer. My main symptoms were pain, bloating, and headaches. The D didn't come until the last month. My blood work was negative, but the biopsy was positive.

I'm just trying to figure everything out, I almost tasted my daughters pasta last night to see if it was done! It is just a whole new way of looking at things. Thanks to all who post on here. Your experiences have been really helpful.

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beefree11 Newbie
beefree11
Posted

welcome Jill :) This is THE place for help and suggestions. Right now Im gonna hit the recipes.

I understand how you must stop yourself and it will take some time. I must dedicate half of my cooking time - first, for my daughter's gluten-free meals then prepare my husbands meals. He is slowly coming around to becoming gluten-free to help our daughter, but it isn't easy for him.

I am still learning about cross contamination (sometimes the hard way with daughter becoming ill :( ). Any questions, feel free to ask.

SGWhiskers Collaborator
SGWhiskers
Posted

Spend time here reading and listen to advice and experiences. I've been at this 2.5 years and this community has had a huge impact on improving my life. It's become second nature to think about everything. Last month, I purchased a new kind of gluten-free spagetti that looks like regular spagetti and when it was time to test the gluten-free noodle it was pretty strange to talk myself into eating it.

Keep educating yourself and get strict fast are my two biggest pieces of advice. A plain Hershey's bar is also gluten free for those early days when you are feeling deprived.

Jill0711 Rookie
Jill0711
Posted
  • Author

Thanks for the welcomes. Today I am feeling pretty positive, but who knows what tomorrow will bring. Now I guess I actually have to learn how to cook :)

Marlie Apprentice
Marlie
Posted

My daughter went gluten free a few weeks back. Try the quinoa spagetti noodles. They taste and look normal. Also try the gluten free snyders pretzels. I'm the pickiest eater in the world and they taste normal. Also today we tried the schar bread sticks. Although bland like an ordinary bread stick would be you can't tell they are gluten free.

SaraKat Contributor
SaraKat
Posted

I was just dx'd in Sept and I was at a party the week later and someone gave me a piece of pie for dessert and I started eating it, my best friend was like- are you supposed to be eating that?? Totally hard to break the habits, I can relate!

Where was your pain pre-diagnosis?

okieinalaska Apprentice
okieinalaska
Posted

Welcome! I just got my confirmation last Thursday so almost the same day as you. :D

I was making gluten free brownies and accidently grabbed the PAM spray for baking (it has flour in it!) Had to use a different pan and I chucked the PAM in the trash.

As for pasta, I have found a pasta my family likes and can't tell the difference so we mostly eat that. (Sam Mills)

:)

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Jill0711 Rookie
Jill0711
Posted
  • Author

There is definitely a learning curve and breaking old habits. My pain is centered right between my rib cage, right near the bra line. It generally feels like someone is stabbing me. At times it was worse than others, but it landed me in the ER a couple times because I couldn't handle the pain. It is funny because the doctor didn't think the pain was related to celiac, but it has gone away since I've been gluten-free...and it came back last night after I was glutened by my well meaning husband. It just goes to show that we know our bodies best :D

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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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