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What is gluten-intolerance and Celiac Disease?

  • I’m not one for recreating the wheel, so here is what the Celiac Disease Foundation, a trusted gluten-free resource since 1990, has to say about the matter:
    Celiac Disease (CD) is a lifelong inherited autoimmune condition affecting children and adults. When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present.”

    is the common name for the proteins in specific grains that are harmful to persons with celiac disease. These proteins are found in ALL forms of wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains ryebarley and triticale and MUST be eliminated.

    A person seeking diagnosis MUST be following a daily diet that contains gluten for at least 4 weeks in order for test results to be accurate. Specific antibody blood tests are the initial step in screening for CD. Patients should always consult with a physician to ensure proper diagnosis.”

What test should I request from my doctor if I suspect I may be gluten-intolerant?

  • Ask for a gluten or Celiac blood panel that should include a combination of the following recommended blood tests, per the Celiac Disease Foundation:

    Anti-tissue transglutaminase antibody (tTG – IgA and IgG) –
    commonly used whether or not symptoms are present and the most sensitive test available
    Anti-endomysial antibody (EMA-IgA) – highly specific marker for celiac disease
    Anti-deaminated gliadin peptide (DGP – IgA and IgG) – used when tTG or EMA is negative and in cases where patient is IgA deficient
    Total serum IgA – used to check levels to exclude selective IgA deficiency that results in a false negative test
    Anti-gliadin antibody (AgA – IgG and IgA) – not considered sensitive or specific enough for adults, but used for children under 2 because tTG and EMA antibodies may be absent. The anti-DGP test is sensitive in this group.
    Genetic blood testing of the DQ2 and DQ8 genes – does not diagnose Celiac Disease. Its largest benefit is that the absence of DQ2 and DQ8 essentially excludes CD. This test will tell you whether or not you have a genetic predisposition to Celiac Disease.

    A patient with positive antibody tests and a patient with selective IgA deficiency are strongly advised to consult with their physician regarding a small bowel biopsy (which is performed endoscopically). A positive small bowel biopsy is required to confirm the diagnosis and assess the degree of damage to the villi in the intestinal lining. Antibody test results can only suggest the presence of Celiac Disease but cannot confirm it. When antibody results and biopsy are inconclusive, or when the patient is on a gluten-free diet, genetic testing of the HLA (human leukocyte antigen) DQ2/DQ8 genes may be helpful. The specific genes DQ2 and/or DQ8 are considered necessary for Celiac Disease to develop. Since one-third of the population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will necessarily develop CD, rather, that they have a genetic predisposition to CD.

    Remember, a person seeking diagnosis must be following a daily diet that contains gluten for at least 4 weeks.

    The onset of Celiac Disease can occur at any time in a person’s life. Once a person is diagnosed, family members should be urged to get tested as well.

What’s the difference between gluten-intolerance and Celiac Disease?

  • Celiac Disease is the name of the disease of gluten-intolerance. There is a lot of conflicting information about the difference between. Here is what the Celiac Sprue Foundation has to say about it:   “When working with a physician to diagnose and/or confirm celiac disease (CD), three major steps are taken. First, a thorough physical examination is conducted, including a series of blood tests, sometimes referred to as the Celiac Blood Panel. Second, a duodenal biopsy is performed with multiple samples from multiple locations in the small intestine. And third, the gluten-free diet is implemented. When the patient shows a positive response to the diet – symptoms subside and the small intestine returns to its normal, healthy state – the diagnosis of CD is confirmed.”As for me, I simply did the genetic test and the food elimination diet. My doctor didn’t recommend the duodenal biopsy. Something about “if it looks like a duck and quacks like a duck…”  Plus, I had already been off gluten for over a month and was totally unwilling to go back on it for another four weeks of pain and suffering in order to get a formalized diagnosis. What I find nowadays with physicians and with my own research is that a food elimination diet identifying the offending ingredient is considered diagnosable as “gluten-intolerant”. But it’s really important to work with a physician to determine if you are truly gluten-intolerant or you have something else bothering you. Here’s a great article that fully explores the subject of obtaining a biopsy or not.

Does my family have to be tested if I test positive?

  • Your family absolutely has to be tested. “First degree relatives (parent, child, sibling) have a 1 in 22 chance of developing celiac disease in their lifetimes; in second degree relatives, (aunt, uncle, cousin, grandparent) the risk is 1 in 39. Only lifetime screening can help family members reduce the long term impact of celiac disease and facilitate a quick diagnosis. They learn that regular antibody testing is necessary because celiac disease is a genetic condition and could appear again in the family at any time.” Here’s the complete article from the University of Chicago, Celiac Disease Center. Remember, the genetic testing is key to determining whether your family members are genetically predisposed to this condition.

Why does my family have to be routinely tested? Can a person develop celiac or gluten-intolerance at any time or later in life?

  • The answer is yes, and it’s part of the latest information about celiac disease and gluten-intolernace. Here’s a great article from the Wall Street Journal which discusses late-onset celiac. This article greatly parallels my actual experiences. For example, I find my body doesn’t distinguish between physical and emotional stress. For me, stress is stress. And my symptoms always became worse and more pronounced after events like childbirth, a physical injury or surgery, the death of a loved one. I suspect things like hormonal changes in adolescence and middle age may have some impact as well, although I have not yet read any research on that. And it’s worth repeating, remember, the genetic testing is key to determining whether your family members are genetically predisposed to this condition.

So all I have to do to be well is to follow a gluten-free diet?

  • Because gluten has been disrupting your small intestines and digestive system, there is an excellent chance you have vitamin deficiencies. Check with your doctor to make sure you’re not low on Iron, Vitamin D, Selenium, Copper and Magnesium.

How can I make sure my child won’t be served gluten at school at a class party?

  • Unless you are physically present, you can’t be sure. I’ll never forget Read Across America day at my son’s kindergarten class when the kids got to eat green eggs and ham. One of the parents thought pancakes would be a nice addition, so she made up a batch and unknowingly served my son. I try to attend as many of those school events as possible, but I’m a working parent as many of you are. So the stash box was born for those frequent moments when the teachers hand out a treat. Mine is a fairly sizable clear plastic bin packed full of Nana’s individually wrapped banana, chocolate and ginger bars, along with mini Hershey’s chocolate bars and Ener-G pretzels. For class parties, I keep a stash of Pamela’s cupcakes in my freezer at home and send one in with him in the morning. And when I’ve got the time, I offer to bring cupcakes or cookies for everyone so that my little guy isn’t always the odd-man out. This year, my son is in a class with a little boy who has a peanut allergy and the teacher agreed that popsicles will be the only treat served this year, which is a great all around alternative.

How can I bring my own food into movie theaters and amusement parks when they have a no-food policy?

  • Here’s where you’re family practitioner can really help out. Get a Doctor’s note and present it to whomever is questioning you about your food. It’s helpful to call ahead and let them know about your situation. Remember to take the name of the person you’ve spoken to so you can name drop at the entrance if you need to. But take heart, places like Disneyland have lists of gluten-free establishments within the park on their website. Ballparks are also slowly providing gluten-free, like our own Petco Park here in San Diego. But really, the best way to deal with these types of situations is to be authoritative and extremely polite.

How do I tactfully ask the host of a dinner party what they’re serving so I can be prepared?

  • I find that actually asking is the hardest part. No one wants to be a high-maintenance guest. But when people realize there is an allergy or intolerance involved, I find they are very receptive. I offer to bring my own food so as to not inconvenience the host. If they insist on accommodating you, be careful. I’ve had one meal in many where I didn’t get sick afterwards, because really, you can’t expect a gluten lay person to know about not using the same tongs when turning the meat on the barbecue. So if they do put food aside for you, thank them and then help with the prep if you can. I always thank my host, telling them how great it is for me to eat someone else’s home cooked meals. And I always bring a gift because I know allergies for a host can be disruptive to their evening. If the setting is more casual, offer to bring a side dish or appetizer that if gluten-friendly, then you’ll know you have at least one thing to eat. And if you can’t manage any of the above, you can take the least preferable route and eat before. Really, your condition is just a great excuse for you to entertain more.

Reading labels can be so confusing because gluten is something a hidden ingredient. How do I navigate food labels?

  • Food labels can drive a person CRAZY. I’ve found the best general rule of thumb for EVERYONE, not just those of us with gluten-intolerance, comes from food author Michael Pollan, author and contributor of such must-reads as Omnivore’s Dilemma and Food Inc. He says the less ingredients the better. If your third grader can’t pronounce it, don’t eat it. And if your grandmother wouldn’t recognize it, stay away. I think it’s excellent advice because so much of what plagues those of us with gluten-intolerance is tucked away and readdressed as “modified food starch” or “natural flavors” – seemingly innocuous ingredients that contain a few words that remind us of familiar food. Celiac.com has a good list of foods to look out for which typically may contain gluten.Identifying gluten when eating out can prove particularly tricky. Here’s a great list of restaurant terms that equal gluten. Some of the best news is that in 2006, the Food and Drug Administration (FDA) introduced the Food Allergen Labeling and Consumer Protection Act (FALCPA), which mandates the disclosure of eight food allergens in the ingredient statement: Milk, egg, wheat, soy, peanut, tree nuts, fish, and crustacean shellfish. So when you read a label that says, “Contains milk and soy”, by it’s omission, gluten is not present. Remember, gluten will not actually be listed. It will be listed as “wheat.” This is a great victory for people with allergies, however, there are still some gray areas.