What people with celiac disease want you to know

Hayden Bishop can’t help but feel terribly self-conscious when going out to dine with friends and family.

Bishop Celiac diseaseA serious autoimmune disease, gluten Creates an antibody response that damages Small intestineCauses debilitating symptoms.

Unfortunately, gluten free The diet epidemic quickly made some people frustrated by apparently grumpy meals and restaurant patrons. The new Harris Paul found that few Americans understand it for people with celiac disease. gluten-Free is not a dietary option, but a medical need.

Even the slightest exposure to gluten can cause a severe rash on Bishop’s body, causing nausea, brain fog, migraine headaches, and constant constipation and diarrhea.

A 29-year-old bishop in Los Angeles talks about people with celiac disease: “I always talk about how just eating, working or traveling with friends at a restaurant is a burden to us. “. “You have to ask all these questions, and many times people look around or they just tell you” don’t eat out. “

“I don’t think people understand what that really means,” Bishop continued. “You have to eat. Work and often Social events, You have to travel and you have to leave your home all day long. Also, if you can’t even buy rotisserie chicken at Whole Foods, what do you eat because it’s cooked in a shared device and contains wheat? “

A new poll conducted on behalf of the nonprofit Beyond Celiac found that only half of Americans knew nothing about celiac disease.

There is no cure for celiac disease

Only a quarter (24%) understand that it is an autoimmune disease. Just over half (53%) understand that there are no medications available to treat celiac disease, and that the only way to control it is to follow a 100% gluten-free diet.

That is, no food has been exposed to the protein gluten-containing grains wheat, barley, and rye.

Celiac disease is beyond gluten hypersensitivity. People who are sensitive to gluten may have similar symptoms, but they cannot tolerate the intestinal damage that occurs with celiac disease.

“Most people looking for gluten-free foods have the idea that it’s because of some diet epidemic,” said Dr. Alan Ehrlich, director of Beyond Celiac and associate professor of family medicine. increase. With the University of Massachusetts School of Medicine.

Erich also suffers from celiac disease, suffering from a mild reaction once or twice a month and a fairly severe reaction once every few months.

“When I go to a restaurant, they often ask me,” Do you like this or are you allergic? ” I call it allergies because they treat allergies differently. ” “But ideally, treat everyone who wants to eat gluten-free foods in much the same way as they treat them rigorously in terms of avoiding mutual contamination.”

Harris Poll also found that nearly two-thirds (61%) of Americans were “totally uncertain” about what condition was associated with untreated celiac disease.These include: anemiaMood disorders, brain fog, migraine, infertility, cancer, osteoporosis, and delayed growth of children.

More than half of people with celiac disease have not yet been diagnosed, but only one-third (32%) of Americans know it. Only 18% understand that a person waits an average of 6 to 10 years for an accurate diagnosis of celiac disease.

Rash leaving “blood under the fingernails”

Symptoms of celiac disease can be life-changing. Bishop was competing professionally in Brazilian Jiu-Jitsu when he developed a severe rash four years ago.

“There were three places on the elbows, knees, and cheeks of the buttocks,” recalls Bishop. “It was very itchy, itchy and scratched while I was asleep, so I was able to wake up with blood under her fingernails. Itching was so bad that I just bleed. was.”

Bishop went from 20-30 hours of training a week in the gym to a maximum of 5 hours “because it takes a lot of time to recover”.

Erich, 63, was suffering from anemia associated with celiac disease when she was diagnosed nine years ago.

“I like to go for a run, and you find you can’t run that fast, and you get very tired at the end of the day,” he said. “My diagnosis was based on my initial diagnosis of iron deficiency anemia. As part of my assessment of anemia, I had an endoscopy with a biopsy from the small intestine, which was abnormal. I found out that there was. Then I had a blood test. It helped me to confirm that it was due to anemia. “

Another fact that only half (49%) of Americans understand is that even if celiac patients strictly follow a gluten-free diet, they are still worried about the symptoms and side effects of their illness. It means that you have to.

In fact, about 25% to 30% of people with celiac disease on a gluten-free diet still have symptoms, Ehrlich said.

After her diagnosis, Bishop cut gluten from her diet and “within the first week the rash really healed.”

However, she continued to suffer from gastrointestinal and neurological symptoms. She initially thought she wasn’t actually achieving a 100% gluten-free diet.

“I didn’t know how a small amount of gluten could damage you, even less than the amount of bread crumbs,” Bishop said. “But in a year and a half, I had a very strict diet that basically minimized everything. To see if it would eliminate all the symptoms I had. I did it for 6 months, and it didn’t’t. “

The doctor finally diagnosed the bishop Refractory abdominal diseaseA rare form in which the body does not respond to a gluten-free diet because the intestines have been damaged too much and remain inflamed.

She ended up taking steroids to suppress the immune system. “And it was a lot of fun because it was between COVID, which is an extreme part of COVID,” Bishop said with a laugh. “But to be honest, I’ve been in the best mood since I was diagnosed. It remitted my body.”

Nonetheless, she continues to have symptoms, as celiac disease has made her body so sensitive to any insults, Bishop said.

“There’s really nothing I can do other than waiting for someone to come up with a drug specifically targeted for celiac disease and its symptoms,” Bishop said.

Sadly, she could wait for a while, Erich said.

“Unfortunately, among medical professionals, even more [U.S. Food and Drug Administration] Well, you Gluten-free diet.. That’s all you need to do. So why do you need medicine? “Ehrlich said.

That attitude among doctors has changed somewhat in recent years, leading to the study of drugs that can mitigate the immune response caused by gluten, Erich said.

Other efforts are looking for ways to alter gut bacteria to protect the gut, or to make the body insensitive to gluten, Erich said.

“There’s a lot to be considered, but none are actually available,” Ehrlich said. “Hopefully it will change in the near future.”

“It requires eternal vigilance.”

Meanwhile, people with celiac disease, such as Erich and Bishop, must continue to live very cautiously.

“If you don’t have celiac disease, what’s hard for people to remember is how often eating is part of our daily lives,” Erich said. “People with celiac disease need eternal vigilance because they only put it in their mouths how many times they see it. You can’t put anything in your mouth without first checking. Is it safe?”

This constant threat is especially Young people With celiac disease, Erich said.

“Whenever you have to worry about’getting sick’, you have to make an emotional sacrifice,” Erich said. A week before her family vacation, she suddenly got sick and didn’t want to ruin her other everyone’s trip. The social stress of illness is as important as the physical effects of eating gluten. “

The worst part is that you have to live almost like a monk, Erich and Bishop said.

“Even if you live in Los Angeles, where you’re aware of food allergies and celiac disease and have a lot of health consciousness, you have to plan everything that’s close to your house. It’s a really safe restaurant,” he said. rice field.

“I have only a handful of places, so I really have to plan everything about food,” Bishop continued. “I always have to be prepared. Take medicine in case you feel sick, or change your plan if you need to rest and be ready to go home early.”

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