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

New Diagnosis

MMrea

By MMrea
in Coping with Celiac Disease

Recommended Posts

MMrea Newbie
MMrea
Posted

New to this forum. I just found out I have Celiac. I am scared and confused. It was diagnosed through blood work. i have several more test coming up. What are the odds of it causing cancer? Also should I have my two children aged 6 and 2 tested? Thanks!

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

Celiac.com Sponsor (A8-M):


Lincoln Rookie
Lincoln
Posted

Hey MMrea,

I have also recently been diagnosed with coeliac disease, I'm not too sure about the cancer but can tell you that coeliac disease in nothing to be scared of. Also it is hereditary so having your children tested is probably a very good idea. Please try not to fear this as it is not worth fearing, also there is no need to be confused, the internet is full of excellent information about coeliac disease just do a few google searchs. The gluten free lifestyle isn't the easiest to adjust to but once you figure out the ins and outs of it it is quite simple.

Welcome to the world of gluten-free.

Lincoln

sandsurfgirl Collaborator
sandsurfgirl
Posted

At first it is so overwhelming. I had panic attacks when I went to the grocery store the first few times. I will be gluten free one year in January and it is so easy now. It's a steep learning curve at first and you feel like you're skiing downhill at top speed but very soon it gets to be your new normal.

The best part is feeling well and not being sick.

Here's a few tips.

1. Eat clean at first. You have a lot of gut damage that needs to heal and your body can't do that unless you give it the best fuel possible. Lean meats, fresh fruits, fresh vegetables, plain rice. It's only for a short while and it will speed you on your way to health. You can pig out on gluten free cakes, gluten free donuts, gluten free mac and cheese, and gluten free pizza later when you are fully healed.

2. the tips of the villi are where you make lactase to digest dairy, so until that heals dairy may be out for a bit. I can eat it with no problem now after years of lactose intolerance.

3. Many also find they need to cut other things for awhile. I can't tolerate soy, except in small amounts like soy lecithin, but for awhile I had to cut dairy, soy, tapioca, xanthan gum and nightshades.

4. Use the search function on these forums and look at old threads. Look for withdrawals and newbies and things like that. Read read read read. You will learn FAR more on here from those of us who have been there done that than you will in any books you have to spend money on.

5. Find one pasta and one bread you like. My favorites are Tinkyada rice pasta and Gluten Free Pantry Basic White bread mix. That bread is also simple ingredients and I was able to tolerate it pretty early into the diet. It's super easy to make, not expensive and it tastes the most "normal" of any bread I've tried. You can actually make a regular sandwich out of it and it doesn't fall apart.

I also like Arrowhead Mills All Purpose baking mix for pancakes. I do one cup mix, one cup milk (or almond milk) and one egg. It already has the baking powder in it.

6. If your body acts weird don't freak out. You will have withdrawals and it will do strange things while you adjust. There was a period where every single thing I put in my mouth made me sick but it passed in about a week.

7. Start researching restaurants and find a few places ahead of time where you can eat out. Prepare now so that you aren't panicking when you are out somewhere and you need to eat.

8. Get used to taking food with you. Apples, bananas, nuts, oranges. Kettle Chips and Baked Kettle Chips are gluten free and travel great in the car. I love the baked ones a lot.

9. Honor your grieving process. At first you will feel deprived and you will go through many emotions. It passes and it's good to process it and come here to vent. We are here to listen if you need to rant.

10. Welcome to the best club you never wanted to join! It does get easier I promise!!!!

sandsurfgirl Collaborator
sandsurfgirl
Posted

Oh and if you are just dying for something sweet, Betty Crocker makes great gluten free mixes. Yellow cake, chocolate chip cookies, devils' food cake and brownies.

Here is a peanut butter cookie recipe that is incredible.

1 cup sugar.

1 cup peanut butter. I use the natural kind.

1 tsp baking powder

1 egg.

Roll the cookies into balls. flatten with a fork. Bake at 350 for about 10 minutes.

MMrea Newbie
MMrea
Posted
  • Author

Thanks for making me feel so welcomed here. I have lots of test coming up but hope I am on the road to recovery. I really appreciate you taking time to help me understand all this. Everything taste like cardboard, I guess you just have to get adjusted! Thanks again for all the support!

cassP Contributor
cassP
Posted

Thanks for making me feel so welcomed here. I have lots of test coming up but hope I am on the road to recovery. I really appreciate you taking time to help me understand all this. Everything taste like cardboard, I guess you just have to get adjusted! Thanks again for all the support!

like said above, it really is best to eat very clean & natural, and try not to eat gluten free treats & carbs on a daily basis... they're usually not healthy, and can be hard to digest too... HOWEVER, we are human, and need treats- just try to keep them to a minimun- think of them as "treats" and not staples.

also, wanted to add, that i LOVE Pamela's Vanilla Cake mix, AND Pamela's Chocolate Cake mix YUMMMMMMM... ive made both with homemade buttercream icing, and they were better than the real gluten thing! but dont get her brownie mix- i thought it was awful

welcome, and release your worries... really- once you've been gluten free for a bit and heal... you're just as healthy as the next person-> probably MORE healthy- think of all the people out there that may have Celiac or something else- but they dont have any symptoms so they dont know to eat right.

ya, just be happy- getting off gluten will change your life and also probably prevent you from getting even more diseases that can be triggered by gluten

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • 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.
×
×
  • 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.