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. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    2. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    3. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    4. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
    5. Scott Adams
      - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    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

    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Am I nuts?

      By Scott Adams · Posted

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.