Celiac Disease, Hidden in Plain Sight: 2021 Beyond Celiac Mini-Conference sessions 1, 2 & discussion
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- Опубликовано: 6 сен 2024
- Mini-Conference Summary
The goal of the Celiac Disease, Hidden in Plain Sight: a Beyond Celiac Mini-Conference is to discuss those who have been “left behind” in the celiac disease world due to missed diagnosis or challenges to diagnosis.
Discussions will focus on the diagnosis of celiac disease in the following areas:
Session 1: Missed diagnosis due to neurological manifestations
Session 2: Missed diagnosis due to patient demographics
Agenda
Welcome from Alice Bast, CEO of Beyond Celiac
Introduction from Salvatore Alesci, MD, PhD Beyond Celiac Chief Scientist and Strategy Officer
Session 1: It’s All in Your Head: Missed Diagnosis due to Neurological Symptoms of Celiac Disease
Panelists: Patient representative Gabrielle Zimmerman, Kate Avery, MPH, of Beyond Celiac and Nigel Hoggard, MD, and Iain Croall, PhD, of the University of Sheffield.
Q&A with Session 1 panel
Session 2: You Don’t Look like You Have Celiac Disease: Missed Diagnosis of Celiac Disease Due to Demographics
Panelists: Patient representative Jocelyn Langevine, Amy Ratner of Beyond Celiac, and Pooja Mehta, MD, of Children’s Hospital Colorado.
Q&A with Session 2 panel
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My 1 1/2" year old girl has celiac(just found out last mouth) i will do everything in my power to protect and guide her in life. I have to make huge lifestyle changes! thank you for having this channel. I have a lot to learn.
It blows my mind MDs in America say gluten doesn’t impact Parkinson’s and dystonia.
My question is what do you do if going off gluten makes the gut even more upset and you have even worse constipation. Again doctors don’t care. I had to go off gluten because the pain in my feet and legs was so bad. No one would test me. Then after I go off celiac now they want to test me. I am so sick of doctors.
Wondering if you have tried eliminating dairy as well? I listen to Peter Osborne DC and Gluten Free RN and they both suggested it. I feel so much better. Basically I do paleo.
Just diagnosed at age 70 after 19 years of being told I have Chronic Fatigue Syndrome. I'm hopeful they were wrong. It sure explains having severe osteoporosis at age 50. Docs just shrugged their shoulders, even knowing I was a marathon runner before I got sick.
Thank you for continuing this work! I have profound fatigue even with a GF diet. It's heartening to know that there are people involved in finding more treatments. ; )
What is interesting is that all my skin problems and weight problems lear up when I'm off dairy as well as gluten. I don't have celiac genes. We will someday have a good test- No one should ever have to take poison to get a proper test. I can't imagine I lived for years in so much pain. Thank God for Gluten Free RN and Peter Osborne. I highly suspect Essential Tremor and Parkinsons are gluten and dairy related. Look how many people Dr Terry Wahls has helped who have MS.
Thank you for the work that you do
How can I get tested? What doctors look for this? Tell me how I can find a doctor? I live in Southern California.
Is there a support group? Does it affect the eye sight?
Would be happy to do survey, 30+ years after diagnosis, GPS in my country discount celiac neurological symptoms,I now avoid doctors
Keep the Faith.....I am now 18 yrs after fighting for years to get diagnosed , healthy, active at 83......my issues started at age 15 when I had to take lunch to a new school....1955......finally diagnosed 2005.....L.
That happened to me quite a bit when I was a little girl... I can remember my stomach hurting and my Mom would rub my tummy for me until I fell asleep
What test did he do? My bloodwork looks negative.
Sad is my case of misdiagnosis. I am damaged beyond total repair . We will see how much now . After being told I am negative I kept eating gluten but see the rash now so bad and so apparent . Eliminating gluten 100% . I always knew I would get a little rash at my watch area or where my socks were snug then it would go away . Allergy tested also told no not allegic to wheat but I know that is wrong because now the rash is so bad only to start clearing when I fast or go without any grains .
Next time you get the rash, ask a dermatologist to biopsy it. It could be dermatitis herpetiformis, which is the rash associated with celiac disease.
Does rice and corn have gluten?
Hi there, we see you've commented a few times! To answer your questions:
1. No, rice and corn do not have gluten. Both are gluten-free.
2. You can get tested by going to your primary care doctor and asking for the celiac disease blood test. If that's positive, they will refer you to a doctor called a gastroenterologist, who specializes in diseases related to the digestive system. They will then have you do an endoscopy, where they look at your intestine with a tiny camera, to confirm celiac disease. (Please note that the blood test does not appear to be as effective in Black patients, so straight to endoscopy may be ideal.)
3. Yes celiac disease can affect eyesight, but it's not a widely common symptom.
4. Yes, there are lots of support groups! If you live in Southern California, the folks in the UC San Diego Celiac Disease Program or UCLA may be able to provide more personalized suggestions for finding local support.
We wish you the best on your health journey, and we are always active on social media and email to help answer questions!