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. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

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

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    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
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.