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A brief introduction to Celiac Disease by a non-expert [1]

['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.']

Date: 2023-09-28

What is Celiac Disease?

Disclaimer: I am not a doctor and I am not dispensing medical advice. I’m just trying to give people a starting point to gather information. Gluten is not bad for you unless you have Celiac Disease (or Non-Celiac Gluten Sensitivity, which I will try to discuss in another diary). A gluten-free diet is not healthier than a diet that contains gluten, and can be as unhealthy as any if the gluten-free sources are junk food like cookies.

Celiac disease is an autoimmune disease caused by a reaction to gluten. It is not an allergy to gluten, although it is a subtle distinction. An allergy when the immune system overreacts to a harmless substance, while an autoimmune disease is when the body attacks itself.

Celiac disease causes damage to the small intestine. The most obvious visual sign is villous atrophy, where the villi, the projections from the intestine that absorb nutrients, are flattened.

What are the symptoms of Celiac Disease?

The there are number of symptoms of Celiac Disease:

These can include bloating, diarrhea, constipation, gas, lactose intolerance, greasy stools, nausea or vomiting and abdominal pain. In children, the symptoms can include damage to the enamel of the permanent teeth, delayed puberty, failure to thrive (that is, gaining less weight than expected for their age), mood changes, slowed growth and short height and weight loss.

Celiac disease can cause symptoms other than gastrointestinal: dermatitus herpetiformis (a type of rash), fatigue, joint or bone pain, depression of anxiety, nervous system symptoms such as headaches or balance problems, reproductive issues, symptoms involving the mouth such as canker sores. See the above link to the National Institutes of Health for more details.

Some people with celiac are asymptomatic. This doesn’t mean that there’s no damage, in these people, they don’t experience symptoms.

A review of medical records of patients with celiac disease and their first-degree relatives found that 44 percent of screened relatives had celiac disease. Of those, about 28 percent had no symptoms, 68 percent had symptoms not typically associated with celiac disease and 6 percent had classic symptoms. Beyond Celiac - Risk for celiac disease overlooked in those with no symptoms

Gluten-induced neurocognitive impairment, also known as “brain fog” or “celiac fog,” has been found to be a symptom in many with celiac disease and gluten-related disorders. Brain fog is a symptom that gets a lot of attention in the celiac disease and non-celiac gluten sensitivity (NCGS) communities, but not as much attention from researchers. In a Beyond Celiac study, 90 percent of survey participants (89% of those with celiac disease and 95% of those with non-celiac gluten sensitivity) reported experiencing brain fog. This, among other research, suggests it is one of the most common symptoms of celiac disease and NCGS. The most commonly-chosen descriptors of brain fog were difficulty concentrating, forgetfulness, and grogginess. The graph below shows the percentage of each participant type who chose each brain fog descriptor. These descriptors may help healthcare providers recognize that patients who use these words to describe symptoms may be experiencing brain fog. BeyondCeliac - Celiac Disease and Brain Fog

When I have a slice of pizza, I’ll have brain for that lasts around an hour. I just took it for granted, and never attributed it to diet. I noticed it after creating a spreadsheet of symptoms.

What are the risks of untreated Celiac Disease?

People with celiac disease have a 2x greater risk of developing coronary artery disease, and a 4x greater risk of developing small bowel cancers. The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer. 1 2 Untreated celiac disease can lead to the development of other autoimmune disorders like type 1 diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, shorymt stature, heart disease, and intestinal cancers. Celiac.org - What is celiac disease?

Patients with celiac disease are at a greater risk for developing pneumonia. This might be due to diminished spleen function, which affects the ability to fight the bacteria that causes pneumonia. BeyondCeliac - Celiac Disease Increases Risk for Pneumonia

I’m under 65, but my doctor recommended that I get the pneumonia vaccine.

Past studies have shown that the risk of lymphoma is slightly higher in people with celiac disease than the rest of the population

A study from 2022 suggests that this increased risk of cancer in those with celiac disease is small and limited to patients diagnosis after 40

small and limited to patients diagnosis after 40 Following a strict gluten-free diet can lower the risk

The risk of developing cancer may increase if a person with celiac disease has remained undiagnosed for a long period of time Beyond Celiac - Celiac and cancer

What is Gluten?

Gluten is a protein found in grains such as wheat, rye and barley.

How is Celiac Disease diagnosed?

Your doctor will order a blood test to test for anti-bodies against gluten. Your doctor will probably advise you to to continue to eat gluten for some time before the test, as there can be a false negative if you’ve been avoiding gluten.

If you have a positive blood test, you’ll be referred to a gastrointestinal specialist for an endoscopy, where a camera is used to examine the stomach and duodenum (the first part of the small intestine) and biopsies will be taken. Inflammation of the stomach and villi are one signs of celiac, but the samples will be examined in the lab to confirm.

Doctors are sometimes reluctant to run the blood tests for celiac. It can be helpful to make a spreadsheet of symptoms you’ve been experiencing, and to be assertive in getting a test.

How is Celiac Disease treated?

Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye, and barley, such as bread and beer. Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage. Read about the Gluten-Free Diet. Celiac disease is also known as coeliac disease, celiac sprue, non-tropical sprue, and gluten sensitive enteropathy. Celiac.org - What is celiac disease?

What kinds of foods can I have?

Look for the “Gluten Free” label. If it doesn’t have that, you’ll have to look at the ingredients. Wheat, rye and barley are right out, they contain gluten. Oats do not have gluten, but they are often cross-contaminated with gluten, so it’s best to avoid oats unless it’s specifically stated that it doesn’t have gluten.

There are many sources of gluten that it’s not at all obvious that it contains gluten. Soy sauce contains wheat unless it’s specifically made without wheat. Look out for malt, it’s usually made from barley and contains gluten.

If the label says “May contain wheat” or “Processed in a facility that also processes wheat” use caution, as there is a high risk of cross-contamination.

If gluten-free ingredients are used in a fryer that is used for gluten-containing ingredients, the food isn’t going to be gluten-free.

Rice is gluten-free — even glutinous rice! In this case “glutinous” doesn’t refer to gluten, but to the rice being sticky. Buckwheat is, despite the name, not at all related to wheat and is gluten free. Sorghum is another gluten-free grain. I like to have it as an alternative to rice, I like the flavor.

Celiac.org - Sources of gluten

There are gluten-free bread products available, they’re generally more expensive and not as tasty as the ones containing gluten. I find Trader Joe’s gluten-free bread acceptable if toasted. My daughter likes the Trader Joe’s GF bagels. I personally like corn tortillas rather than bread.

Vegetables and meat are gluten-free.

Wine and hard liquor are gluten free, but beer, unfortunately is not. The good news is that there is gluten-removed and gluten free beer. Gluten-removed beer is regular beer that has had the gluten removed, while gluten-free beer is beer made from gluten free ingredients. Not everyone trusts gluten-removed beer, and I haven’t looked into it enough to tell if this distrust is removed. I have tried Glutenberg Blonde, which is made with millet and corn (both of which are gluten-free) and I found it pretty good. I want to try the Stout, but haven’t been able to find it.

Is there any such thing as a cheat day?

It’s like cheating on parachute day. It’s going to hurt you.

How can I help my friends who have Celiac Disease?

Don’t crack jokes about it, they probably don’t think it’s funny. If you’re going to invite people with Celiac Disease to an event, have something that they can eat. Many people with Celiac Disease will bring their own food, don’t take it as an insult. They know how to make food that they can eat. If you’re going out to a restaurant, try to find one that has gluten-free options. If you go to one that doesn’t have any GF options, be understanding that they might not want to join you. Personally, I wouldn’t want to keep anyone from restaurants they enjoy, but I would rather stay at home than sit in a restaurant where I can’t eat.

A big one to understand is that people with Celiac Disease can’t have “just a little bit of gluten”, that little bit will do some damage.

OK, what next?

If there’s interest, I’ll write diaries about misconceptions about Celiac disease and gluten-free diets and about Non-Celiac Gluten Sensitivity.

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[1] Url: https://www.dailykos.com/stories/2023/9/28/2196022/-A-brief-introduction-to-Celiac-Disease-by-a-non-expert

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