Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed


trk1980

Recommended Posts

trk1980 Newbie

Today I was diagnosed with Celiac disease. I was informed that I would have to meet with a dietician and go on a gluten free diet for 3 months. the nurse I spoke with pretty much left it at that leaving me wondering. Do I only have to be gluten free for 3 months? What happens after the 3 months. She barely described the disease at all and what risks are involved with eating foods containing gluten. Is there anyone out there that can help me kick start or give me pointers on the new lifestyle I will be living?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Dixiebell Contributor

Hi! Welcome to the forum!

How did they diagnose you, blood tests, biopsy or both?

You will need to eat gluten free forever. I don't know why she would tell you three months.

Read everything you can and hang around here, ask lots questions, you will learn a lot.

Lisa Mentor

Welcome to the Club trk!

Unfortunately, it's a life long commitment. But, after you get over the initial shock, it gets so much easier. And we are here to help young along this new road you travel.

Everyone is welcome. There are no stupid questions, because everyone here has been in your shoes. Please ask away. This is the best source you can find and good people who will guide you along your road.

trk1980 Newbie

Thank you for your input. I had both a blood test and biopsy to diagnose me. I have known now for almost a week and I can't seem to get myself to not eat gluten. It's almost like I have to eat my favorite foods one more time before I can call it quits...I purchased a few cookbooks and a dining out guide along with a grocery shopping guide...hopefully this will help in grocery shopping. I was in our local store for over an hour reading labels and I was so overwhelmed I just ended up leaving with nothing. Pizza and pasta are my favorites. Do you have any suggestions on what brands we can eat and still have it be satisfying? I am really glad I found this website...at least I can talk to people who know what I'm going through...everyone around me just doesn't get the disease

mushroom Proficient

Well, you are in luck Tinkyada makes some wonderful gluten free pastas and, depending on where you live, many many pizza joints are now offering gluten free pizza. So no need to be deprived.

Yes, the first trip to the grocery store often has that kind of effect - it just all suddenly seems so overwhelming, many posters have reporting running out in tears :o So if you didn't do that you are a step ahead. So what you do do is tackle it in small (gluten free) bites :)

That is to say, that you avoid anything which might have gluten in it at first, and just shop the outsides of the supermarket where all the fresh meat, fish, veggies and fruits are, and usually also dairy, although you may want to eliminate at least milk, cream, and ice cream at first - anything with lactose is normally hard for a new celiac to digest untill healing has taken place. You may be okay with yogurt and hard cheeses. Anyway, we were talking about eating fresh, whole foods you prepare yourself from scratch, so you know what is going in them. You will need a gluten free flour mix and it seems most people start out with Pamela's because it's easy and it's ubiquitous :) That way if you want to make a gravy you have a flour mix, if your kids are dying for a cookie, you can bake cookies, if you absolutely must have a waffle, you can make a waffle. You will no doubt already have rice in your house, but you will need to venture into the gluten free section of your grocery store, or into a health food store, to find Tinkyada pasta, and some bread - most people seem to love Udi's and more and more places are carrying it. Whole Foods carries both these products. If you are not doing butter you will need a substitute, and you can buy milk substitutes like almond, hemp, soy - if you do soy! or rice milk, but some rice milks have traces of barley enzymes in them so best not at first.

So now, with a fresh jar of peanut butter and fresh spreads that do not have breadcrumbs in them, you are all set. And then gradually, as you heal, spread your wings a little farther and experiment with other things. But any time you buy a product that has an ingredients list, READ IT!! And read all of it. Because sometimes right at the bottom in small print it says "may contain traces of gluten". :unsure:

Now you can sally forth confidently, prepare delicious gluten free meals for your family and not have to worry about what might be in that can of baked beans (that is, until you are ready to read the labels of baked bean cans :lol: )

salexander421 Enthusiast

I'm assuming they told you 3 months just to make sure you respond to a gluten free diet. But as others have already said, it is a lifelong way of eating.

CeliacMom2008 Enthusiast

When you're up for it, here is amazing pizza. It's really very easy to do - my 11 year old can make it. You just have to have the ingredients on hand. I make it every weekend for our pizza and movie night.

PIZZA CRUST

INGREDIENTS:

1 Tbs dry yeast

1/2 tsp of sugar

2/3 cup of warm water

2/3 cups of brown rice flour

1/2 cup of tapioca flour

2 Tbs of dried milk powder

2 tsp of xanthan gum

1/2 tsp of salt

1 tsp of unflavored gelatin powder (we use Knox gelatin)

1 tsp of Italian seasoning (I use McCormick)

1 tsp of olive oil

1 tsp of apple cider vinegar

METHOD:

Pre-heat oven to 425F

Mix sugar, yeast, and warm water and set aside.

Combine dry ingredients in medium sized bowl.

When yeast mixture is frothy (takes about 5-10 minutes), add it and the apple cider vinegar and the olive oil to the dry ingredients. (I double the recipe, and for this part I use a 2 cup glass measuring cup to mix the sugar, water, and yeast, when the mixture has frothed up to the top of the glass I know it


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CeliacMom2008 Enthusiast

Oh, and we like Ancient Harvest Quinoa pasta and Tinkyada. Your two favorites (pizza and pasta) are actually two really easy things to do gluten free!

trk1980 Newbie

thank you all for your help. Yesterday I received the Triumph dining out guide and the Triumph grocery shopping guide and they both look like they will be very helpful

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.