Do you advocate testing for a child <8-year-old. who has a celiac parent but who is asymptomatic? Yes, we know that there is a higher prevalence of celiac disease in first and second degree relatives of already diagnosed individuals.
Is blood work done at 4/12 screening with full celiac panel? The following screening tests used at the Kogan Celiac Center are sensitive and specific tests for diagnosing celiac disease: Total serum IgA and anti-tissue transglutaminase IgA.
If someone has the celiac gene but tests negative for the disease in both serology and biopsy, how frequently should they be retested? There are no current studies regarding frequency of testing, but it is generally thought that retesting for children and adults should occur every 3-5 years. Consult with your physician to determine what fits best into your overall healthcare plan.
Which testing is more precise: endoscope/biopsy or genetic testing? Endoscopy will show the presence or absence of celiac disease, genetic testing will show if an individual is predisposed to develop celiac disease.
Is it possible to have negative blood work and still have celiac disease? Yes. A small but significant number of individuals with celiac disease are IgA deficient so if the method of testing measures IgA antibodies to tissue transglutaminase, it is possible for results to be negative; IgG antibody testing would be necessary for these individuals. Rarely, individuals may be negative with all serology, but still show villous atropy.
Can a positive AGA IgG without evidence of celiac sprue still be celiac disease? I have been told by one doctor it was borderline celiac, another said it was not. This test is used for children under 5 years of age as their IgA antibodies are frequently undeveloped. AGA IgG testing is not as specific a test for celiac disease in older children or adults as others. At the Kogan Celiac Center, we recommend testing for Total serum IgA and anti-IgA tTg.
How long should my 1 year old eat gluten to have enough in her system for screening? At the Kogan Celiac Center, we recommend a 1 month gluten challenge for individuals interested in antibody screening, but who have been following a gluten free diet.
Should the screening form include ataxia, neurological problems? Yes.
What kind of preparation needs to be done for the screening scheduled for 4/12? This is not a fasting test. Simply eat a normal diet and do not restrict gluten in any way!
How long will a child be on a gluten free diet before their blood tests are completely normal? This varies from patient to patient and sometimes depends on how much damage was done prior to beginning the gluten free diet. On average, a downward trend in serum antibodies can be seen in most patients after 6 months of strict adherence to the diet.
Ingredients
What about oats? Oat matzoh? Pure, uncontaminated oats are now believed to be tolerated by the majority of celiacs, with only a small percentage exhibiting symptoms after ingestion. At the Kogan Celiac Center, we recommend that a person be completely compliant on a gluten free diet, test negative for antibodies and be completely asymptomatic for at least 6 months before introducing gluten free oats – this way oats can be identified and isolated if symptoms are experienced.
Is “wheat free” terrayaki or “soy sauce” OK? Is there a difference between soy and soy sauce as an ingredient? Soy sauce is normally fermented with wheat, and labels should indicate this. Wheat free soy sauce can be purchased at most health food stores and some grocery stores. Soy as an individual ingredient is gluten free.
What is in vanilla that has gluten? Pure vanilla extract is gluten free. However, many flavorings and spices are not pure and contain other additives that aid in processing or add flavor and color that might be sources of gluten.
How about MSG? MSG that is made in the United States is gluten free but some foreign sources may be questionable. Manufacturers should be consulted as to the source of any MSG that they use; unfortunately they many not always know or publicize this information.
What about French Fries and the oil they are fried in? French Fries must be investigated from two angles. First, you must make sure that the fries themselves have not been coated in flour to prevent sticking during processing and packaging and that none of the ingredients contain gluten. Second, you must ascertain that the fries are fried or baked in oil that is reserved only for gluten free French fries because it is believed that gluten may actually survive the high heat of frying. Feel free to ask if an establishment has a dedicated fryer for French fries – many actually do.
Can we eat foods that state on their labels, “May be made in facilities that also produce wheat products?” This is an individual decision that must be made based on information that is available from a given manufacturer. Some individuals are comfortable knowing that production lines are washed down between gluten-containing and gluten-free production runs, others are not. Consider interviewing a manufacturer on their process or protocols for these situations to determine your own comfort level and acceptability for your own personal situation.
What about cosmetics? Eye cream, shampoos? Gluten is absorbed through the GI tract. Obvious products that must be monitored are lipsticks and toothpaste. Also to be considered is skin cream that may enter the mouth via hands or face. Unless hair products are ingested, there is no need to worry about their gluten content.
Medical
What are the male fertility problems associated with celiac disease, e.g. sperm count? Recent studies show changes in sperm motility in individuals with uncontrolled celiac disease.
Is celiac ataxia reversible with gluten free diet? It is unlikely that ataxia will be completely reversible.
I have gained over 20 pounds since diagnosis 6 years ago and cannot lose weight no matter what I do. Frequently, individuals will gain weight on the gluten free diet, as their intestines heal and absorption increases. Additionally, many gluten free products are higher in fat and offer smaller portions. Traditional methods for weight control – decreased calorie intake, increased activity levels – apply. Additionally, thyroid dysfunction frequently co-exists with celiac disease, so consult with your physician about this to help with your overall weight management program.
Why aren’t insurance companies willing to pay for a nutritionist after diagnosis? Unfortunately, the majority of insurance coverage for dietary counseling is related to renal disease or diabetes. The American Dietetic Association and other related healthcare organizations continue to lobby insurance companies for change regarding this issue.
Do you feel that there will be a cure found for celiac disease over the next 5 years or so, or at least a magic pill? We continue to be hopeful for cures or treatment for celiac disease other than a gluten free diet and will post current information and developments as they occur.
Can you comment on the emotional/depression component of celiac disease? Known symptoms of celiac disease include changes in mental status.
Can you make vitamin recommendations? We cannot recommend specific brands, but there are many well-known national brands that make gluten free vitamin and supplement preparations.
