Celiac Disease Support Group

Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...

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grace6 05/17/2018

I will be 21 in June and I should be in college, but instead I spend most of my time at doctors appointments. I was diagnosed with celiac the summer of 2016 and have been strictly gluten free ever since. Although I have completely cut gluten out of my diet for two years I still suffer from debilitating stomach pain and nausea that makes it hard to eat. I keep loosing weight and nothing seems to help. Now they tell me my celiac caused osteoporosis.. at age 21, so upsetting. I suffer every day from rashes on my face, nausea, pain, bloating, fatigue with no relief. I just keep thinking what could they be missing? These symptoms cannot still be from celaic disease. No one else in my family has celiac disease so I have no one to compare my experience with. But it definitely doesn't seem right that for two years of seeing doctors and being gluten free I am still suffering this much every day. I was given no choice but to take medical leave from nursing school due to being so weak and ill every day. I came onto this website looking for some hope that things will get better.

soulsearcher83 05/17/2018

I had severe back pain and was misdiagnosed repeatedly over a two-and-a-half-year period. Several doctors looked at me and got it wrong. Until someone finally got right. I had to go to a different kind of surgeon than the ones I was originally going to to get the right diagnosis and surgery. When you're talking to a gastroenterologist, they're looking for a problem in your digestive system. When you're talking to a kidney doctor, they're looking for a kidney problem. Doctors see through their own lens of their own specialty. I think you should need to go for a second, third and even fourth opinion. I find it suspicious that you would be having these problems associated with celiac disease after being gluten free for so long and it's ongoing for 2 years. Tells me there might be something else going on. I know it sucks right now. It doesn't seem like there's a light at the end of the tunnel. I felt like that for 2 and 1/2 years. I made it out on the other side. Once you get the right diagnosis and treatment, your health is going to bounce back and you can go to college, go travel the world, start your own business, do whatever the hell you want. Just hold on for now and don't give up. Go get those other opinions. It sounds like you already suspect there's something else going on and you might be right.

ChirstyAnn 05/31/2018

I was also diagnosed with celiac in summer 2016. Two years later, and even though I take ALL precautions to keep gluten out of my diet - my bloods still come back saying there are traces. I'm now trying to completely cut out any product that is made in a factory with gluten products. I was told I was at risk of osteoporosis and was given calcium supplements, which so far I've had no problem with. Have you also made sure not to take any oats ? Even if they are gluten free? I would also suggest and allergy patch test incase its a simple allergy or intolerance causing a bad reaction. I'm also going away to college this year and I was so worried for ages as I was still having constant upset tummies and fatigue. I was on iron supplements, which were completely distributing my stomache so I had an iron infusion and now im much better. I know it feels like your never going to get better and you want to give up and just not go but as soon as you work out what it is causing it (you will!!) You'll feel better within weeks. Good luck.

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