the patient celiac

Celiac Q&A

0 comments June 18, 2017

I was recently checking my blog email account and I realized that I get a lot of messages from readers (which I love) and that many of the questions have similar themes. Here are examples of some of the most common questions that I get, along with my attempts to answer them:

1. "My mother, who is 65 years old, has recently developed symptoms that might be from celiac disease, including irritable bowel syndrome, anemia, and an underactive thyroid. She refuses to get tested though because she was tested 6 or 7 years ago when she was evaluated by by a GI doctor for reflux. What should I tell her?"

Answer: In a person who is genetically predisposed to celiac disease, celiac can develop anytime during life, from age 9 months til 99 years. So she needs to be re-evaluated. Also, as an aside, I have met a few people who developed symptoms, had negative testing in the past, went back to review their medical records, and did actual have it but never knew. So, it's always good to review everything on your own that you've had done in the past.

2. "My sister-in-law told use she has celiac disease but she's overweight, so we don't believe her. Aren't people with celiac disease supposed to be skinny?"

Answer: In the past it was believed that celiac disease was a pediatric disease that caused weight loss and failure-to-thrive and that people eventually outgrew it. It is now known that people with celiac disease can be any weight when diagnosed, including overweight. In one study from 2006, between 30 and 50% of adults with celiac disease were actually overweight at the time of diagnosis, with 10% being obese.

3. "I started a GF diet 3 months ago and feel great but now I would like to get tested for celiac disease. What should I do?"

Answer: Unfortunately, after as little as two weeks on a GF diet, celiac blood tests and small intestine biopsies can be unreliable. Hence the need for a gluten challenge, which I discuss in this post, along with discuss possible future celiac testing protocols that will require very short gluten challenges (72 hr) or even none at all. Stay tuned for more info...

4. "I've been having digestive problems and we found out that I have one of the celiac genes when my doctor tested me. Does this mean I have celiac disease? If not, should I go GF anyway?"

Answer: Being a carrier for either of the celiac genes (HLA-DQ2 and HLA-DQ8) does not mean that you have celiac disease, just that you have the genetic potential to possibly develop it. Most people with the celiac genes do not ever develop celiac.  At the present time it is not recommended that one go GF just because they carry these genes because they are so common (i.e. approx 30-40% of Americans of northern or western European ancestry carry one of these genes). Also more to come in a future post!

5. "My friend was just diagnosed with celiac disease. What can I do to support her?"

-Don't say things to her like "I would die if I could never eat bread again" because it will make her feel worse.
-Try to avoid taking her to activities that are based around food for a bit, like potlucks, grand openings of new bakeries, and cookie swaps.
-When she comes to visit your home, try to have at least one GF snack and drink for her. Examples include GF crackers with grapes and cheese, a brand new container of hummus with veggies (needs to be brand new so no risk of gluten cross-contamination), and GF tortilla chips (most are) along with a brand new container of salsa or guacamole. Safe drinks include wine and GF ciders, like Seattle Cider.

6. "I have celiac disease and am pregnant. My OB told me that I can start to eat gluten again because my celiac disease will go into remission while I'm pregnant since it's autoimmune. Is this true?"

Answer: No, this is not true, and I get sad when I think about how many times people have asked me this.

7. "We have a two and a half year old who has celiac disease symptoms and it runs in my family. His celiac blood tests were negative though, so we were told he does not have it, even though my intuition tells me he does. How should we proceed?"

Answer: Many toddlers with celiac disease do not have high enough loads of celiac antibodies to turn positive on celiac blood panels. Because of this, young children with concerning symptoms, like your son, must have endoscopies with small bowel biopsies as part of the work-up for celiac disease.

8. "I keep going out to restaurants that have GF menus, eating GF items, and getting sick. What am I doing wrong?"

Answer: It's the restaurants that are doing things wrong. I cannot keep count of how many times I've attempted to dine out, only to talk to managers and find out that items that are advertised as being "GF" or "gluten friendly" or "celiac friendly" are actually not safe for any of us with celiac disease to eat.  Common sources of gluten cross-contamination include shared cutting boards, grills, fryers, and food preparation surfaces and ovens. 

9. "My doctor did an endoscopy to look for celiac disease, took a look and said everything looked good, so he did not do any biopsies. I keep eating gluten, though, and am really ill. Could he have been wrong?"

Answer: Yes, when one has an endoscopy to test for celiac disease, biopsies must be obtained from the tissue of several parts of the small intestine. The damage from celiac is often not visible to the naked eye.

10. "I had food sensitivity testing and it shows that I am sensitive to about 30 foods in addition to gluten. Do I really need to eliminate all of them? Because if I do I will have nothing left to eat."

Answer: No, you do not have to eliminate all of them. Many of the food sensitivity panels on the market test for IgG antibodies to foods. All that IgG antibodies show is that you have been exposed to the food sometime during your life. It's often the case that you'll have the highest IgG antibodies to foods that you eat a lot of--this just indicates exposure (for example, if I love to eat potatoes, my IgG level to potatoes might be higher than my IgG level for other foods). For some reason people are being led to believe that this means they have food sensitivies, when they actually do not.

Thank you so much for reading. Please keep your questions coming, and let me know if you feel like you'd like to have a more in-depth conversation with me as well.

Blog post currently doesn't have any comments.
Copyright Jessica Madden All rights reserved