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.

  • 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. - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Challenges eating gluten before biopsy

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      16

      My only proof

    3. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    4. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,457
    • Most Online (within 30 mins)
      7,748

    Elliana Brooker
    Newest Member
    Elliana Brooker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
×
×
  • 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.