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 Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    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

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.