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

Recommended Posts

islandmomma Newbie

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

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

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

You had left-overs? B)

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

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

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

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

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

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

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.

  • 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. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

    3. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

    4. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,667
    • Most Online (within 30 mins)
      7,748

    S.Aulman
    Newest Member
    S.Aulman
    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

    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Hi  Thank you, will tell her to do that
×
×
  • 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.