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! Help!


bjn12670

Recommended Posts

bjn12670 Rookie

I was recently diagnosed with Celiac Disease. I feel extremely overwhelmed and am quite honestly afraid to eat anything. Does anyone have any recommendations on books, websites, lists, etc. to help me start my journey on finding out what I can eat and what I can't eat? I know to watch for "wheat" on labels, but are there other ingredients I should watch for? I saw that some spices have gluten in them. Do they state that on the label?

Any insight would be so helpful. I feel grateful that such forums exist. :(


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



Celiac.com Sponsor (A8-M):



confused Community Regular

The first thing to do is to take an deep breath and relax. Next is to do as much readin on this forum as possible and ask as many questions as you want.

There is a book gluten free for dummies that you can read. Also Dr. Green write an really good book (the name just slipped my mind, but someone will recommend it).

It is best to just eat basic when first diagnosed. I would eat meat, fruits and veggies for the first couple of weeks til you get used to reading labels and everything.

paula

Krystle56 Newbie

I'm newly diagnosed too! (As of last Tuesday, 6 days ago) I think I know how you're feeling...I felt like I was the weirdest person ever and totally abnormal. This website is going to make you feel so much better. I was scared to eat anything too but the foods you CAN have out number the ones you CAN'T. You will start feeling better in no time! :)

If you are looking for a book, the one by Dr. Green is called Celiac Disease: A Hidden Epidemic. I believe this is the book that the pervious poster was talking about...?? I just order it on (Company Name Removed - They Spammed This Forum and are Banned) a few days ago but haven't recieved it in the mail yet. This website is fantastic for helping to cope.

Something I did to help me with my initial grocery shopping and was I went out to yahoo.com or google or whatever you use...and type in things like "Kraft gluten free foods" or "Heniz gluten free foods" or "ore ida gluten free foods" and you can find lists of foods that are gluten free that will be on your stores shelves. I printed a whole BUNCH of stuff off and put it all in a binder.

This is the "safe" food list: https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

And this is the "unsafe" food list: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Both those lists came right from celiac.com and should be pretty up to date!

Lisa Mentor

Hi bnj! Welcome to this site. Everyone here has been in your shoes and we can help you make the gluten free transition.

I recently had a chance to review the Triumph Dining - "The Essential Gluten Free Grocery Guide". I was quite impressed and sure wished that it was available when I were newly diagnosed. The Guide lists over 30,000 main stream grocery products. Information on the Guide can be found on wwwtriumphdining.com. Lists are great in the beginning, but it's not too good to depend on them in the long run because ingredients do change and they may become out of date.

People with Celiac Disease cannot have wheat, barley, malt, rye and most oats. Wheat, one of the 8 recognized allergens, must be listed if it's an ingredient. Barley, malt, rye do not have to be listed. Sometimes, depending on the product, they can be hidden in species or natural flavors.

I won't throw too much at you at one time. But, this is a great site for most of the information that you will be needing during this transition.

I know that you are overwhelmed right now, but trust me, it will get better. And welcome again.

bjn12670 Rookie

Sorry, I was kind of impersonal, wasn't I? My name is Becki.

Thank you so much for the book recommendation. I am going to order it tonight. I think it will be very helpful. I have also been on the internet alot and trying to gain as much knowledge as I can. Fortunately, there is so much information and support. I feel like I am welcomed into a huge family all trying to help each other. I am looking forward to our "chats" and learning as much as I can. I am on the road to recovery.....

Did you meet with a dietician after you were diagnosed?

Hi bnj! Welcome to this site. Everyone here has been in your shoes and we can help you make the gluten free transition.

I recently had a chance to review the Triumph Dining - "The Essential Gluten Free Grocery Guide". I was quite impressed and sure wished that it was available when I were newly diagnosed. The Guide lists over 30,000 main stream grocery products. Information on the Guide can be found on wwwtriumphdining.com. Lists are great in the beginning, but it's not too good to depend on them in the long run because ingredients do change and they may become out of date.

People with Celiac Disease cannot have wheat, barley, malt, rye and most oats. Wheat, one of the 8 recognized allergens, must be listed if it's an ingredient. Barley, malt, rye do not have to be listed. Sometimes, depending on the product, they can be hidden in species or natural flavors.

I won't throw too much at you at one time. But, this is a great site for most of the information that you will be needing during this transition.

I know that you are overwhelmed right now, but trust me, it will get better. And welcome again.

ang1e0251 Contributor

Welcome, Becki! I didn't work with a dietician but I have a good friend with celiac disease & she was a big inspiration and help to me. This website has been the most helpful to me. I agree with you that it's like a big ol' family and how great that they support you and believe in you!

I will second the advice to start with simple basic foods for awhile till you get the hang of it. I tried to make something new or try a new food every week while I was so new. That didn't overwhelm me and I had a few days to make a shopping list and remember what I was to look out for. I also carried a list of no-no's in my purse at all times. I also only ate corn tortillas in place of bread for a long time till I felt adjusted.

You'll be fine and I promise it will get easier. Ask anything you want here, if one person doesn't know the answer, another will. Happy GFing!!

The One Apprentice

paula, the book by Dr Green is called Celiac Disease: a Hidden Epidemic, if that's the one you're talking about, I have it right in front of me! ;) it is a great book and I highly recommend it. You can rent it from a Library if you dont want to buy it.


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

Here is a list of companies that will state on their label if any gluten ingredients are present...

Open Original Shared Link

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
      133,333
    • Most Online (within 30 mins)
      7,748

    Donna Chem
    Newest Member
    Donna Chem
    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
      @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.