I have late-onset Celiac Disease

[Vobl]

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 ❤️.  

[CDFAMILY]

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

[CDFAMILY]

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!

[Scott Adams]

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.