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

I Am Celebrating Today :)

islandmomma

By islandmomma
in Coping with Celiac Disease

Recommended Posts

islandmomma Newbie
islandmomma
Posted

Well, you have to stay pleased about the small gifts that come your way, right? I went for my ill-fated colonscopy yesterday after the typical three month waitlist and two day purge (much less nasty than 15 years ago when I had my last one). It went poorly in the sense that it could not be completed because there are too many diverticular growths blocking the colon to see all the way. That also made it quite painful and I was vomiting several hours afterwards. So now he wants to do a CT colon scan and of course I am allergic to dyes if contrast is to be used. As well, I have stage 3 kidney disease so the purging process possibly should not have been ordered in the first place for yesterday's scope and now will have to be repeated for the scan. I cannot believe how little info we are given by doctors and how we are expected to accept their directives without question! Thank Heavens for the internet! Most docs seem to hate it....

Anyway, part of the good news is that I called his office and refused to go for more tests until I have some of my concerns addressed. I have never questioned a surgeon on his judgment before but should have many times in hindsight. I feel proud :D.

But the BEST part of the good news is that I went right back on the gluten free diet last night and went out to a restaurant with a gluten free menu. You know eating after a 2 day fast is great and I expected it to be, especially now my appetite is coming back (3 weeks now gluten free). I have felt sick no matter what I ate for months and months.

Guess what the restaurant had? Gluten free pasta with baked cheese all over it!! I felt I had died and gone to Heaven. It was so wonderful and I slept better than in months and feel great today. I even went to the store next to the restaurant and loaded up on some gluten free itemslike pancake mix and cookies to try as I have been scared until now. Ate the leftover pasta for breakfast and all is still well. I am having a sunny moment lol.

Hope you all have a good day.

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

I am so pleased for you "having a sunny moment" :) and I have to say.......... your post just made my day!

I just had a similar discussion with another member about how we should never overlook the "little miracles" in our daily lives.

With all you are going through and what you have endured, you see the simple joy in a delicious meal ---and you feel well on top of it!

Good for you!! Thanks so much for sharing your sunny moment with us.

Best wishes to you.

kareng Grand Master
kareng
Posted

Ate the leftover pasta for breakfast and all is still well.

You had left-overs? B)

IrishHeart Veteran
IrishHeart
Posted
:lol: she was saving them for an "encore"!!! encore!!!
islandmomma Newbie
islandmomma
Posted
  • Author

LOL, ty for your replies. I could not eat all of it last night! My tummy had shrunk!!

Now I am back to having fears about eating anything else but hit another gluten free store today and found so many good things!! I am definitely a convert.... watch me go now, folks! Pancake mix, cookies, pasta, crackers....and GUM DROPS!!! What else is important in life anyway lol?? I bought berries and melon that I love but would never buy out of season!! TY guys for all your info and input. Where were you 30 years ago??

Even better news, The surgeon phoned me and said a gluten free diet is good because all he can do really for me, malignancy or not, re the garbage in my colon, is to chop it all out and I WILL not do that!! Wish me luck!! Also, he said, if it (the diet) is not working for me as I'd hoped, I do not have to sit on a W/L for many months to deal with it further. Warned me that the prep for my kidney issues is even more aversive as is the procedure itself for someone like me with all my issues to have a colon virtual scan. Soooooo...I choose not to. I will deal with it. Np.

I now have cookies, crackers, cheeses and many many other gluten free foods now :). I had fun shopping! I have few needs lol I guess.

jan

Ps I have now lost about 17 pounds....Maybe it is not a good way but better from my perspective..... have also dropped 2 of my 15 pills a day as they are not guaranteed gluten-free.

GFinDC Veteran
GFinDC
Posted

Welcome to the forum Jan! :)

Gluten-free goodies are fun, but they do tend to pack more calories than their regular gluteny counterparts. So don't go over board on them to start with if you are concerned about your weight going up. Sometimes people are concerned about not gaining enough weight. I put in a few tips below and the bottom link is for a microwave bun recipe. Darn things take all of 90 seconds to make in the nuker. I used to cut them in half and toast them on the gas stove top as they were to thick for the toaster.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

islandmomma Newbie
islandmomma
Posted
  • Author

You ARE so sweet, GFin DC and I sure liked your subject line..... TY for it all.

My (D?) H is a twit so...may lose some threads here. He is a type I diabetic with dementia, major pre-eminent needs always, and considerable antipathy towards me, and maybe towards my own food issues...:( It is hard for me ro take charge of this dietary stuff. BUT, today was a good day.

jan

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

You are such an inspiration, Jan, with your sunny moment, your sunny attitude, your sunny personality and outlook on life. I am glad you had a good day!

IrishHeart Veteran
IrishHeart
Posted

I came back to say some more about the gluten-free goodies, but I see Gee Eff in Dee Cee has already graciously provided his super-duper post for newbies -and I love him for it.

Saves me a bunch of typing and it covers all the bases! Thanks, Gee Eff!.

GFinDC Veteran
GFinDC
Posted

Oops, sorry Jan, that should have said 90 second not 9 seconds for the microwave buns, so corrected!

Sorry about H being a pain. Some celiacs go entirely grain free and find they get along better that way. I tried it myself for a while but it didn't make any difference to me. But some diabetics follow the gluten-free diet also, and do a very low carb version similar to grain-free. I use Mission brand corn tortillas some for wraps. There is also a brand of bread called Open Original Shared Link now, that is available in very low carb versions like almond flour. It is pricey though. There are rice wraps you can get also, Udi's makes some. They work better if you steam them a little before folding.

Really I don't use bread much anymore. Meats, eggs, veggies and nuts and fruits are most of my diet. I do drink tea and use some stevia or other no calorie sweetner in it. Seems like a I red something about coconut being good for dementia. Well, seems it is still not Open Original Shared Link whether it helps or not.

Well, maybe Paleo or grain free would work well for both of you?

Hey IH,

Thanks, we seem to think alike sometimes. Scary huh? :D

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. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    2. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748
    Hana B
    Newest Member
    Hana B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
×
×
  • 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.