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Introduction And Thanks

Mskedi

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Mskedi Newbie
Mskedi
Posted

Last week my sister was diagnosed with Celiac Disease. This was no surprise considering my grandmother had it and my cousin was diagnosed a few years ago. Just about everyone in my family complains of digestive problems and, because of that, several relatives who have had negative blood results have chosen to avoid gluten anyway. They report great improvement overall.

So, when my sister was diagnosed, I decided that I should cut gluten out of my diet despite my negative blood test a few years back. My grandmother had several negative blood tests, and, if I remember correctly, so did my cousin, so my blood test would hardly be definitive. I figure it simply isn't worth it to have the chance of letting things develop to what they did for them, and if I successfully cut all the gluten out, I can never be diagnosed. Besides, by going gluten-free I can share recipes and products with my sister... I really don't want her to have to make this big change alone. My husband fully supports this decision, and had actually been bringing it up long before my sister's diagnosis -- just about every time I complained of having a stomach (technically intestinal) ache after eating.

Over the past week, I have relied heavily on this website, and I wanted to express my thanks to all of you who have posted information, support, recipes, and experiences. It's definitely made this switch seem much more realistic and doable than it sounded at first.

I think I've been most surprised by the number of symptoms related to Celiacs that I was unaware of. Digestive trouble was obvious, and anemia and its related easy bruising also made sense, but depression and skin problems? I never would have thought of those. It will be interesting to see if going gluten-free helps at all in any of those areas. I am most anxious to see improvement in my anemia. I have never once had a normal iron count. I even had a doctor tell me that "some people simply can't absorb iron very well" when no amount of iron supplements helped. After about six months of this, I'll have a blood panel done and see if there has been any improvement.

After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

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Mtndog Collaborator
Mtndog
Posted

I'm SO glad that you were able to find the help and support you needed here!

Welcome, welcome, welcome!

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome, I am another blood negative celiac so I know how difficult the diagnosis process can sometimes be. As you have seen you found a great place for info and support. If you have any questions or just need to vent we are here for you. I hope you are feeling better soon.

ranger Enthusiast
ranger
Posted

Welcome! This forum has helped me a zillion times. At first, I just read and read. It not only taught me the ins and outs of going gluten-free, but also kept me from feeling so alone in the world. People don't know much about celiac's- I know I didn't before I got it. Hang in there and feel free to ask questions- even if you think they're dumb ones!

K-Dawg Explorer
K-Dawg
Posted
After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

Hey - WELCOME!

I know what you mean -- I am newly diagnosed and this board is SO helpful. Can't wait to hear some of those vegetarian recipes!

Good luck

  • 4 weeks later...
Mskedi Newbie
Mskedi
Posted
  • Author

I thought I'd update since I've been just about a month gluten-free now.

The difference is pretty drastic. First off, my scalp isn't itchy and scabby anymore at all. Who knew? Also, digestive troubles are a thing of the past but for two recent accidental glutenings (the reactions to which were so severe that I'm pretty sure I made the right decision). I feel GOOD, and now that I've successfully made a gluten-free flour tortilla (I always said I liked corn ones better, and then the minute I couldn't have flour ones I started craving them), I don't feel deprived in the least. I'm actually having a lot of fun messing around with recipes and de-glutenizing them. It probably helps that the teaching year doesn't start for another month, so, except for the classes I'm taking, I've got a good chunk of the day to play around in the kitchen. I think I'll have mastered a pretty good set of yummy staples by the time I have to start packing my lunch again.

I've been reading a lot and getting more informed, and my sister is doing really well with the diet. So far, so good.

Mskedi Newbie
Mskedi
Posted
  • Author

Oh! And I've been sleeping through the night! I haven't done that in ages!!

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happygirl Collaborator
happygirl
Posted

Happy to hear your family is doing so well. I just wanted to welcome you to this corner of the Celiac world. Its a good place to be!

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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

      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?
    • 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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