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

jillwyckoff

Recommended Posts

jillwyckoff Newbie
jillwyckoff
Posted

Hi friends,

Just recently diagnosed (12/30) and started my wonderful gluten-free diet on 1/1. I've researched till I'm blue in the face. I think I got a good grip on things. But I'm really hoping to find some "normal" in all this to grab onto.

First, "normal" in terms of everyday yummy foods. Since things change every day, and manufacturers keep dodging the bullet by saying "check every second" (okay, not so much in those words, but you know what I'm saying), can anyone recommend any normal foods (today) that are yummy. I'm looking specifically for snacks (gum, candybars, crackers, etc.) that I can get from the regular food store. I almost cried when I found out that Kozy Shack Rice Pudding was gluten-free (no lie). Just wondering if anyone can make me shed another tear over some other new "normal" food discovery.

Second, "normal" in regards to health. I'm exhausted. I'm still fuzzy headed. I'm still nausious off and on, and my mood swings are pathetic. They're driving me crazy, never mind everyone else. Is this all normal for a while? If so, how long. The only physical side effect I've noticed since going gluten-free is that my allergies have almost disappeared. This is amazing since I'm alergic to everything and have sneezed my way through life for the past 40+ years. I've used about 6 kleenex since the 1st of the year when I would normally use nearly 1/3 of a box each day. If this is from being gluten-free - I'm really excited!

Thirdly, "normal" in eating out and traveling. Anyone have any ideas of this? My husband and I love to eat out and I have no idea (other than protein burgers at In and Out) where to go. I'd love ideas if you have them.

I know there's got to be some "normal" to be found hidden in this crazy disease. I think it would make me a lot happier to find little pieces of normal than none at all.

I appreciate your help! Thank you!!

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

jillwyckoff:

Welcome to the site, this is a great place to get your questions answered!

First: "normal snacks" - There is a new potato snack called "Crunch Toons" they are kinda like Gold Fish crackers. I have not been able to find any crackers yet, but when I do I will let you know :) - Candy bars Hershey's, Snickers, mostly all of them EXCEPT the ones that have cookie or rice in them (i.e. twix, crunch, kit kat, etc.) Gum - I believe Wrigley's is gluten-free.

Second: I have been gluten-free since Sept and I still have some lingering sypmtoms too, I think sometimes it just takes awhile. ;)

Guest jhmom
Guest jhmom
Posted

OPPS... added post before I was through.. :D

Third: Eating out: I am not sure if these restaurants are in your area: Wendy's & Outback Steakhouse both have a gluten-free menu. The best thing to do is see if the restaurant has a website and if they don't post it there email them for confirmation.

I hope this helps, again welcome to the board.

wclemens Newbie
wclemens
Posted

jillwyckoff, I'm so glad you are on the road to recovery, and that you've found this site. From your post, I can see that you are such a positive soul, and that you are making the best of a challenging situation. I've had Celiac since I was 8, and I'm 59 now so I've had many of the same challenges of which you write.

I believe you will begin to see real changes in being clear headed in your thinking with this diet, and yes, I also had so many allergic symptoms, which have gotten better as I've stuck to the diet. Mine presented as Asthma, which just keeps getting better and better as I learn which foods I can tolerate. Along with gluten, I have to stay away from milk, dairy, egg whites and yeast, but I feel really great now that I no longer ingest those foods. Your energy level will most likely increase, along with your stamina, perseverance, and patience.

About eating out--I can eat at Acapulco Mexican Restaurant, and always order chicken tacos, chicken tamales, and refried beans, all with no cheese. At fast food places I ask for the hamburger or chicken burger without the bun or cheese. At El Pollo Loco and Major Market I order chicken breasts, and at Boston Market I get turkey, meat loaf, and green beans. Meat, fish, chicken, turkey--these are the easiest things for me to order when I go out. I have to be especially careful of salad because sometimes they wash it in chemicals, then I have an asthma attack. Salad dressings and butter are also usually off limits because of added milk, so usually I carry a purse just for condiments and foods that I know are safe.

For example, Imperial Margarine, Kraft Mayonnaise, some fruit or nuts in case I get into a "pickle" and can't find anything suitable, maybe a dessert I know is safe, or whatever I think will work for me that particular day. I think one of the foremost lessons I've learned through the years is that I am responsible for my own well-being, and no one else really knows what I can eat or tolerate.

Since Celiac is genetic, some of my family members are now being tested, and already we have identified my new little grandson as gluten sensitive and allergic to milk and dairy. As time goes by, I predict that we will find that many other family members have the same thing we do, whether they are exhibiting symptoms or not.

I'll be wishing you Godspeed in your recovery! Welda

  • 8 years later...
Jjphr Newbie
Jjphr
Posted

Pop Chips are a delicious low cal, low fat snack! They are expensixe but worth it. My regular restaurant stops are chipotle, pei Wei, pf Changsha, Carrabbas, outback steakhouse, Kona grill, and cantina Laredo. They all have gluten-free menus. Good luck!

psawyer Proficient
psawyer
Posted

This topic is more than eight years old. The original poster has not been back since 2004.

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. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    2. 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...
    3. 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...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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. 
×
×
  • 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.