Celiac Disease 101: Everything You Need To Know

Recent studies and advances in diagnosis show that at least 3 million Americans, or about 1 in 133 people have celiac disease, an autoimmune condition that affects the lining of the small intestine, commonly caused by the body's inability to properly process gluten. But it is also estimated that less than 1 in 5 of those living with Celiac disease are ever diagnosed. We welcome back Dr. Neil Nandi, with The American College of Gastroenterology's Patient Care Committee, to discuss the symptoms, diagnosis, testing, and treatment for celiac disease, as well as the role of gluten in your diet and why you may want to reconsider a gluten-free diet if you don't have celiac disease or non-celiac gluten sensitivity.

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[TheGalwayfan]

I was diagnosed with bloodwork and a small bowel biopsy back in the late 1980s. That gastroenterologist saved my life! I was losing weight and had severe malnutrition. I was hospitalized for 3 weeks because of it. I'm 4'10" tall and my shoes come from the kids' department. My mother died from type 1 diabetes 3 years before my diagnosis. My son has dermatitis herpetiformis, so he's gluten free as well. He and I have the same celiac genetics. Im guessing my mom did too. Her doctor thought she had illiitis but never tested her for anything. She had uncontrollable blood glucose readings and died just 12 years into her type 1 diagnosis. She was 4'11". My adult son is barely 5'3". His dad is 5'8". There are far more symptoms of celiac disease than you presented. Yes, my son and I do get elevated liver enzymes along with it. We also have lots of diarrhea and stomach cramping. I have pretty severe pain in the middle upper quadrant of my abdomen. When diagnosed, I was completely unable to eat because of the pain. I had been without food for about 6 weeks when I got hospitalized and diagnosed. I was majorly sick!

[ozzyc]

These guys are so right you can have almost no symptoms. I put tiredness down to my thyroid. When I went back to my thyroid specialist for my usual tests he told me I had Celiac Disease. I didn't even know he had tested me for Celiac - he said I had some of the worst results he had seen.

[ritacarter]

I’m not going to keep eating something for months that I think is making me sick waiting to get into a dr to get diagnosed. I can’t get into my dr for months.

[ketakipathak]

Very well presented. I am a dietetics student and this covers all the necessary points.

[MoniqueAduSustainableLiving]

This was a very informative and helpful discussion to help those that may suspect Celiac, or have Celiac to navigate some of these challenging steps. Many thanks and blessings to you both for your time, and great discussion/tips.

[KatherineKirk-nive]

It seems crazy to me to continue eating gluten for a diagnosis and continue damaging the small intestine when cutting the glueten we works?

[gymnasticlife]

What if you feel immediate reaction like the next day feel horrible? One doc already suspected it currently waiting for blood work results etc etc but already diagnosed severe deficiencies and feeling anemic 😔 ugh

[idunsgarden]

I got tested when I was diagnosed for Hashimotos back in 2012. I got a “weak positive” for antigliadin and TTG was around 7. They said I was fine, but I started getting bloating really bad in 2020 so I cut it out. Recently had gluten while traveling and felt fine so I had more, now I’m back to feeling awful and bloated. I have one of the genes and wanted to get another blood test next week at the doctor but I don’t think I can keep eating it. 😅

[חייםמ-יע]

At the age of 35, the skin on my hands began to crack, even bleed. For years, doctors didn't know what it was. A decade later, I started suffering from painless diarrhea and vomiting every few months. Even then, doctors didn't know what it was. So, a year ago, at the age of 52, I decided to look into it in depth and asked my doctor for a celiac test. He didn't understand why, but he agreed. Then it turned out that I had celiac disease. I stopped eating gluten, and it wasn't easy, but my hands healed and the vomiting and diarrhea went away. It's a shame that science hasn't found a cure yet, but I think the more people who have celiac disease, the more science will try to find a cure.

[Saima.Nosheen]

My daughter is 12 she is celiac since she was little. It’s been few months that she complains that she feels sad all the time when her blood test vitamin D, B12, irons are perfect. I’m worried.

[WendyHannan-ptez]

What about itchy scalp and skin, anyone else experience this ?

[RuaWaterwalker]

Has anyone considered, the chemicals that are used on our food and the pollution in our rain/water?

[Sara-jbzl]

I was diagnosted very very late, about I have already big Problems and searching for help. Is there a possibility to speak with someone?

[christinaoneill]

How can an elevation in liver enzymes be caused by Celiac disease?

[Lorac]

Is Dr. Nandi taking new patients (Nov 2023)? Can you provide contact information please?

[misssicily]

I got diagnosed at the end of October 2024. I went on a gluten free diet. I still have the symptoms when will I start feeling like myself again?

[tonimartine]

I don't believe I heard the difference between Celiac and Gluten mentioned. When I eat any food labled gluten free, I still get Ataxia. I've fallen after leaving restauranrs many times and ended up with staples in my scalp ( 3 to the most 10 staples). This is a dangerous issue and aught to be disussed in your forum.

[Edie]

They say people lose weight. I have gained weight. I have had diarrhea only 3 times since diagnosed, it depends on how much gluten i had. I eat a handful of nuts in the morning so i can take my vitamins which i take a bunch daily to make up for not being able to absorb it, figure maybe id get at least some extra in there. I have noticed that since i was diagnosed in 2019, my hair had become brittle at the ends woth breakage. My hair grows, but breaks at the end not allowing my hair to get longer. Is there anything to help with this? Im assuming this is because i may be deficient in some vitamin or nutrient. I use coconut oil on my hair practically drenched in it before i wash my hair and it makes it less dry when i style it and less breakage. I have schambergs disease on one leg not sure if this could be a symptom of celiac though. My nutritionist told me to take glutamine to help heal the villi, other than that i dont know why im gaining weight or how to stop the breakage in my hair.

[winniecash]

Can't thank you enough. I'm 61 YEARS OLD and have so many symptoms AND HAVE FOR YEARS AND MY EFN DOCTORS HAVE DONE NOTHING. I'M SO PISSED BECAUSE I'VE SUFFERED FOR YEARS. OUR DOCTORS SUCK BIG TIME. THEY ARE SO UNEDUCATED AND UNCARING AND SHOULD BE ASHAMED OF THEMSELVES. i guess you two are a little different

[rodbarker]

Gluten free is better for you, nature never developed processed food, you can eat very healthy and be Gluten free, I haven't been tested and have a bunch of symptoms and so far Gluten free is stopping those symptoms I don't want get sick to be tested easier to just go gluten free and eat healthy with varied natural foods.