Celiac on a Gluten-Free Diet Who Still Feels Terrible

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Today we would like to share the story of one of our readers. She sent us a message asking for help because she was diagnosed with celiac disease 10 years ago and she feels like she is getting sicker even following a gluten-free diet.

If you can relate to that, read her story, then find out why this can happen to some celiacs.

When I was younger I went to the docs a lot a lot for stomach pains, headaches,bone pains, you name it.. It was always brushed off as I’m a hypochondriac or I got food poisoning.. When I was seventeen at school the pain just got so unbearable and the noises my stomach made was horrible my teacher could hear it.. So I had to go to the hospital which sent me to the specialist. They found I had celiac disease. ten years ago. I followed the diet the past ten years I’ve been contaminated and I know I have but then there’s my meals that I make that I know are not contaminated.. And I’m still sick all the time and it’s getting worse the pain in my stomach, the fatigue, the migraines everyday. I go without eating most days until dinner time so that through the day I’m not sick and in pain..I wait till night when I can set and relax with my husband and four kids.. But it’s not very relaxing being in the pain and if you have kids you know they don’t stop asking mom until there asleep. I’m now getting sent in for cat scans and to see the specialist. I’m pushing for them to do another test of my intestine’s to find why I’m not healing or feeling better but there brushing me off and saying they won’t do it again until I’m 50. My regular doc has just reported to me that I’m malnourished and all my labs were low expect my white blood cells of course. I wonder who else has these issues. Or how to help myself to become better.. I’ve researched a lot and from the sounds of it celiac disease is still a giant mystery to everyone. As you all know the gluten free food is very expensive so even harder to eat..
Julie Hayes
Julie is not the first celiac to report feeling sick even after following a gluten-free diet for a long time. But why does this happen? Isn’t gluten the villain and once we eliminate it from our lives shouldn’t we start felling better?
There are a few things we should consider when a gluten-free diet doesn’t treat celiac disease:
1. First of all, know that it may take up to 24 months to heal your gut after going 100% gluten-free.

2. According to the website “patients who are not doing well on a gluten-free diet may have additional biopsies to rule out refractory celiac disease. Refractory celiac disease, also known as refractory sprue, affects up to 5% of patients. For these patients, the damaged villi in the small intestine do not heal from a gluten-free diet, and all other potential causes for this damage have been ruled out. These patients are usually treated with steroids and immunosuppressants.

Other Common co-occuring conditions in people with celiac disease who don’t feel completely better on a gluten-free diet are:

Read more about those diseases at 

3. Another thing we should keep in mind is the ingestion of hidden gluten, even in so called gluten-free products. Gluten truly hides everywhere. So, our tip is stay away from processed food and give preference to whole organic food. Also, watch out for gluten in cosmetics, specially in lipsticks and toothpastes.

4. Finally, it is also important to highlight that there are studies that show not all patients with celiac disease recover by following a strict gluten-free diet. You can read some of those studies here and share with your doctor if you think it’s appropriate.

If you are wondering where you can find healthcare practitioners who treat patients with celiac disease and other gluten-related disorders, you can check the directory at Celiac.Org here. (This is for the United States only)

We would love to read your opinion on this topic, so that we can all help Julie and all the other celiacs like her.

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