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. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      1

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Exactly. What about King Arthur gluten free flour selling a gluten free bread flour containing “gluten free wheat starch” and says in allergens “contains wheat.” I don’t care if it contains a trace amount of wheat ok’ed by the food industry. For a celiac…100% gluten free and that’s all is acceptable. Hard alcohols and ciders and hard seltzers say gluten free...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      6

      Second chance

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former...
    3. trents
      - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the...
    4. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Here are some articles on cross-reactivity and celiac disease:
    5. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,643
    • Most Online (within 30 mins)
      7,748
    MariSmit
    Newest Member
    MariSmit
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
×
×
  • 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.