Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 have late-onset Celiac Disease


Vobl

Recommended Posts

Vobl Newbie

Hello- I have late-onset Celiac Disease, with one gene marker according to my 23&Me data. In June 2017, after 3 months (since mid March 2017) of continuous stomach pain, nausea, severe diarrhea, right-side of abdomen swelling and hardness, and weight loss due to not being able to eat, my medical team was finally able to detect yersinia enterocolitica, a rare food-borne bacteria infection (via stool sample). I went through a 5-day round of Ciprofloxacin and all symptoms improved.  Months later though I began to experience increasing fatigue, bloating and weight gain, fatigue, inflammation, and full body joint pain. It got worse and worse over the course of 2 years until blood tests revealed 11+ CRP (inflammation), anemia, vitamin D deficiency, etc.  Malabsorption/‘leaky gut’ was what led to a stool test for gluten and lactose intolerance— no issues with lactose came back but the results had an ‘off the charts’ presence of gluten immunoglobulins (via Enterolab). Blood tests were inconclusive, which was confusing! But after I went strictly gluten free, within 2 weeks my fatigue and obvious inflammation issues (like joint pain, fatigue. abdominal bloating, swollen tongue, ‘puffy’ face, etc) had started to improve.  My medical team has me taking blood tests for CRP every 6 months, and I’m finally down in normal rage after a year gluten-free!  Occasionally I will experience accidentally eating gluten contaminated food, and I will get a recurrence of symptoms (diarrhea, bloating, fatigue) within 24-36 hours.  Usually resolves within a week.  I am bummed about the lifestyle change because I LOVE gluten, but also so relieved to be able to live a healthy life by knowing what I just can’t eat anymore. It is inconclusive whether the infection or the antibiotics, or the combination of both contributed to the Celiac gene activation.  Fingers crossed that in my lifetime (I’m now 41) there will be a treatment so I can enjoy delicious pasta and baked goods again ❤️.  

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



CDFAMILY Rookie
On 1/22/2022 at 11:56 AM, Vobl said:

Hello- I have late-onset Celiac Disease, with one gene marker according to my 23&Me data. In June 2017, after 3 months (since mid March 2017) of continuous stomach pain, nausea, severe diarrhea, right-side of abdomen swelling and hardness, and weight loss due to not being able to eat, my medical team was finally able to detect yersinia enterocolitica, a rare food-borne bacteria infection (via stool sample). I went through a 5-day round of Ciprofloxacin and all symptoms improved.  Months later though I began to experience increasing fatigue, bloating and weight gain, fatigue, inflammation, and full body joint pain. It got worse and worse over the course of 2 years until blood tests revealed 11+ CRP (inflammation), anemia, vitamin D deficiency, etc.  Malabsorption/‘leaky gut’ was what led to a stool test for gluten and lactose intolerance— no issues with lactose came back but the results had an ‘off the charts’ presence of gluten immunoglobulins (via Enterolab). Blood tests were inconclusive, which was confusing! But after I went strictly gluten free, within 2 weeks my fatigue and obvious inflammation issues (like joint pain, fatigue. abdominal bloating, swollen tongue, ‘puffy’ face, etc) had started to improve.  My medical team has me taking blood tests for CRP every 6 months, and I’m finally down in normal rage after a year gluten-free!  Occasionally I will experience accidentally eating gluten contaminated food, and I will get a recurrence of symptoms (diarrhea, bloating, fatigue) within 24-36 hours.  Usually resolves within a week.  I am bummed about the lifestyle change because I LOVE gluten, but also so relieved to be able to live a healthy life by knowing what I just can’t eat anymore. It is inconclusive whether the infection or the antibiotics, or the combination of both contributed to the Celiac gene activation.  Fingers crossed that in my lifetime (I’m now 41) there will be a treatment so I can enjoy delicious pasta and baked goods again ❤️.  

Hi Vobl, I am so glad you are feeling better!!! 

I was a pastaholic before being dx with Celiac in 2005.  For years I was unhappy with the gluten-free pastas until recently when I found, "Jovial" which has many varieties including my favorite Angel Hair.  I could not believe how good it was and how it tasted like the real pasta I used to eat.  It is of course not cheap about $3.49-sale-$4.99.  As with baked goods, you can really make anything gluten-free that is as good or almost as good as the regular gluten containing baked goods.  But the truth is that being gluten free for 13 years along with my husband and 3 adult kids....we no longer seem to care if we have desserts anymore.  I wish you all the best of luck with your health.  Linda

Link to comment
Share on other sites
CDFAMILY Rookie
3 minutes ago, CDFAMILY said:

Hi Vobl, I am so glad you are feeling better!!! 

I was a pastaholic before being dx with Celiac in 2005.  For years I was unhappy with the gluten-free pastas until recently when I found, "Jovial" which has many varieties including my favorite Angel Hair.  I could not believe how good it was and how it tasted like the real pasta I used to eat.  It is of course not cheap about $3.49-sale-$4.99.  As with baked goods, you can really make anything gluten-free that is as good or almost as good as the regular gluten containing baked goods.  But the truth is that being gluten free for 13 years along with my husband and 3 adult kids....we no longer seem to care if we have desserts anymore.  I wish you all the best of luck with your health.  Linda

Whoops, I have been gluten free for 17 years!

Link to comment
Share on other sites
Scott Adams Grand Master

My favorite gluten-free pasta is Barilla, which you can find at most major supermarkets now, including Target. My non-gluten-free friends can't tell it's gluten-free.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,762
    • Most Online (within 30 mins)
      7,748

    Jody-JS
    Newest Member
    Jody-JS
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • julie falco
    • Dhruv
      @trents I absolutely understand the perspective of getting off completely from wheat,  but sometimes situation may occur that you won't have choice to eat other than wheat,  my son travels a lot, since they travel in team, it's not easy to go out and find him a gluten free every single time! I have seen, even in NJ I m struggling to find out gluten free stuff, in this country we don't get fresh food in stores, other day i saw gluten free bread so hard that will never feel to eat it! Once in while means once in a while, when there is no absolute option. Here all goes by book, there is no enough scientific research done yet on eating gluten with celiac,  everyone has there own narrative,  only it being said don't eat wheat, but Noone has come up with the experience. And moreover my sons diagnosis is yet to define, whether he has celiac or NCGS. last time his endoscopy came negative hence doctor did not bother to tell us. I hope this time it will be the same case. We are figuring out why his billirubin is high, may be that could be the reason his igg iga test is high, will get check on all and come to the conclusion. My son and us is absolutely fine not eating gluten, but one can't guarantee that every time they will get the gluten free food other than home. I also don't trust under the table of "gluten free products" have see people still have same iga igg count even after following the diet. This is all learnings, will keep him under observation and go through the regular testing to find out how his body reacts to what.  I may sound like a fool, but medical is scam in US, hence i would consult doctors in India. 14 years ago they have announced i had a breast cancer, which was not, since then I don't trust medical system here.
    • Scott Adams
      Here are two older articles we've done on this topic which might be helpful:  
    • Rogol72
      I've been to Italy recently for a wedding and it was excellent. I made my own gluten-free sandwiches/pannini to take on the flights.  Spain is good and you can get good gluten-free breads in the supermarkets there. The UK and Ireland are very good also. Australia would be good since Coeliac Disease is fairly common there ...1 in 70 as opposed to 1 in 100 in other countries. You have to advocate for yourself in restaurants when eating out. I've read about several Coeliacs being cross contaminated from preordered gluten-free meals on airlines. Personally, I wouldn't trust a gluten-free meal on an airline especially long haul. Try the hashtag celiactravel on tiktok and instagram. Loads of Coeliacs posting about their experiences with plenty travel tips. The Atly app has a list of gluten-free friendly restaurants worldwide.
    • Pat Denman
      "Do not follow after the crowd to do what is bad." Bible. The world is full of crazy people who have little love for their neighbor. Eat what is best for you and ignore their recommendations. 
×
×
  • Create New...