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

Really Curious & Really Nosey


Guest BellyTimber

Recommended Posts

Guest BellyTimber

(Apologies if it's been covered earlier -- haven't discovered all the back pages yet)

Anyone using the forum pursued a gluten-free lifestyle for 50 yrs like Rose Kennedy?

40?

...etc

Me, about 2 and a quarter but with lots of bungling as I'm dyspraxic - and yes I'm hoping an occupational therapist will advise me how to reorganise my kitchen so I can do the baking & other food preparation better.

(Friends are too shy or uncomprehending to get involved in any of that)

In my old flat which was four times the size I had a good system going but I couldn't "generalise" the skill when I had to move. (Also spent time coughing up blood over that transition)

Anyone that thinks this enquiry is out of order - please say.

Best of wishes all

Michael


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



Celiac.com Sponsor (A8-M):



Guest Viola

I've been gluten free since 1989. Although I'm the only one in the household, my husband is not gluten free except in cases where a meal is normally so, such as potatoes, vegies and a non coated meat. Which means of course that I make two meals most of the time.

darlindeb25 Collaborator

i have been gluten-free since july of 2001---my sister is celiac and now my father has been gluten-free since nov and he will be 70 next month--my sis is 46 and i am 49---we probably all have been celiac since young---my sis and i have always had problems and no diagnosis---my dad has always had stomach problems--i remember him taking little pink stomach pills for years and years--lots of us have been celiac for years and just not known it---ya know michael, you can ask anything you want in here, no one has to answer anything they dont want too--otay--deb

mopsie Newbie

I've only been gluten-free 8 months, but my sister has been for roughly 25 years and her son was diagnosed as an infant and he's now 36. That was tough, back then, there was so little info and help available. We've got it good now. :D

Guest BellyTimber

"Hats off" to Viola, and to Mopsie's sister.

It's so good to get the longer view and realise there is a positive life once we're further through this dark confusing phase.

At the same time it's been so heartening reading posts of people who are still at or near the beginning like me, it shows I am far from alone.

Keep the replies rolling anyone that is so inspired to do...

Thanks so much

Michael

WLJOHNSON Newbie

Hi,

I've been gluten free for a long time. I'm 60 years old and have had symptoms of Celiac since the age of 8, however, there was no way to know back then that the reason for my wheezing and asthma was due to what I was eating. That revelation only came by way of visiting numerous doctors and specialists, being hospitalized so many times, spending all of my funds on doctors, treatments, and medicine, pretty much to no avail. Only when I decided to go my own route, which meant eliminating certain foods from my diet (this was in the 70s), did I finally find some relief. I stopped eating all grains, all milk and dairy products, and finally egg whites and yeast. My early warning system (asthma) would notify me within 15 minutes if I had eaten gluten or dairy, and then I would have to deal with the consequences. In the beginning I would go back to those foods once I was feeling better, only to go through the same routine again, until I eventually learned not to cheat, and NEVER to eat the offending foods. Here's how I know that I love myself not to eat those foods--I spent 6 months recently working two jobs, one in an ice cream parlor and one in a bakery. It was great to be able to see those foods as poison for me, and to share about celiac to some of the people who really didn't know much about the disease. Good luck with your journey in this new land. I know you will feel better when you get organized and when you follow a strict but delicious gluten free diet! Best wishes, Welda

Archived

This topic is now archived and is closed to further replies.

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

    • Total Members
      133,159
    • Most Online (within 30 mins)
      7,748

    Greymo
    Newest Member
    Greymo
    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
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
×
×
  • 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.