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Newly Diagnosed

SMRI

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SMRI Collaborator
SMRI
Posted

I was diagnosed a couple weeks ago with Celiac so I'm starting my journey with this new life :D.  My test results were :

 

Open Original Shared Link  32.2  >10 being positive

 

Open Original Shared Link 66.5  >30 positive

 

Open Original Shared Link 17.6  >9 positive

 

Open Original Shared Link  23.5  with <20 being positive

 

my biopsy was also positive and I have the genetic pairs so it's a pretty sure thing I guess.

 

So, I go back to the doctor at the end of the month to meet with the GI Celiac team and was told to not stop Gluten until I see them...so, I'm eating all the stuff I love that I won't be able to eat :D.  I'm here to just absorb information and learn about this new way of life.  I bought my first real gluten free food today to try-it was on sale at the grocery store!

 

So, hello to all and I look forward to getting to know everyone here!

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SMRI Collaborator
SMRI
Posted
  • Author

That question is high on my list of questions to ask when I go back.  Everyone here talks about being "glutened" and having reactions right away, will that happen to me, who is fairly symptom free other then bathroom issues, but, after I totally cut out gluten, will the reactions come harder???  I'm also looking forward to the holiday season and if I have a cookie or two after being gluten-free until then, what happens? I am sure everyone is different but I don't run to the bathroom now every time I eat something with gluten so who knows :D.

GottaSki Mentor
GottaSki
Posted

Hello!

And Welcome!

Take a look around and let us know how we can help your transition :)

Here is a great start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

LauraTX Rising Star
LauraTX
Posted

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

SMRI Collaborator
SMRI
Posted
  • Author

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

 

I think they wanted me to wait because there is one doctor doing a study and maybe some further tests???  He is doing a genetic study I think and I was originally tested because I have a relative with Celiac and had a few symptoms, mainly fatigue and bathroom issues :D.  I haven't met with the GI team yet either so some of that scheduling was due to my schedule too.  I have a few other things going on that they are looking at as well and I'm on a restricted calorie diet so that pretty much eliminates a lot of Gluten products, breads, pasta, etc., because of the calorie count.

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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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