You should know that:
- Information about the gluten-free diet, including a Quick Start Diet Guide, is here.
- Lori Petrie is a board member of GlutenFreeIndy and a registered dietitian who is well-versed in the gluten-free diet. Lori will answer questions about the diet. You may contact her at LAPetrie@stvincent.org or 317.415.7998.
- Celiac Disease Foundation in conjunction with medical experts has developed checklists for the initial and follow-up care you (or your child) should receive. The adult checklist is here, the pediatric checklist is here.
- University of Chicago also provides information about the follow-up testing you should have.
- It's a good idea to request a copy of your blood test and biopsy results for your records. You may have received a letter summarizing these results, but also ask for a copy of the actual lab reports. You are entitled under federal law to get a copy of any and all test results. This is an important step, because there may be information in the reports that you are not aware of (it does happen). Also, in the future you may need those tests for reference. Doctors retire, medical practices merge, someone misfiles a report, you move to another state, etc. Keep a copy! You may never need it, but if you do, you have it!
- If you continue to have digestive symptoms on the GF diet, you may have lactose intolerance, which is quite common in people with CD. Fortunately, this often improves after about 6 months on the diet. Until then, you can avoid dairy or try lactase supplements. Some dairy products have lower levels of lactase and may be tolerated.
- You may find that foods that are very acidic, rough or spicy-hot make you feel bad even if they are gluten-free. These may simply be irritating your digestive tract. You can experiment with avoiding these types of foods (for example, soft drinks, orange juice, kefir, popcorn, and hot peppers or hot sauce) to see if you feel better.
- Gluten is often found in over-the-counter drugs (it is much less common in prescription drugs). There is a list of gluten-free medications at glutenfreedrugs.com, which is a site maintained by a pharmacist. Also you can ask your pharmacist to check with the manufacturer before buying any medication, prescription or over-the-counter. (Saying something like "I'd like to buy this but I can't unless I know it's gluten-free. Can you check with the manufacturer?")
- Herbal supplements and probiotics are frequently contaminated with gluten (See Published Drug Test Results). The safest choice may be to avoid using them at all. But if you want to use a supplement or probiotic, a possibly safe source is Kirkman Labs.
- Spices are also frequently contaminated with gluten (See Published Food Test Results). To help avoid contamination, use fresh herbs when you can. A possibly safe source of spices is Spicely Organics, which is the only full line of certified gluten-free spices. These are rather pricey, but are much more reasonable per ounce when bought in their larger (1 lb) packages. Many of their spices are available at Amazon.
- Whenever possible, use products that are certified gluten-free. You can find a list of products certified by the GFCO here.
- Consider membership in GlutenFreeWatchDog, which is the "Consumer Reports" for gluten-free food.
- Although you may be reading that the gluten free diet consists of "no wheat, rye or barley", until recently oats were also on that list and were not allowed on the diet. There are some major issues with oats. You can read more about the situation with oats here:
- Cross Contamination in Oats
- Oats: Beyond Cross Contamination
- Recommendations on Oat Consumption from the Celiac Center at Beth Israel Deaconess Medical Center: "Currently, avoiding consumption of oats is recommended by the clinicians of the Celiac Center, Beth Israel Deaconess Medical Center, for newly diagnosed patients until it can be clearly demonstrated that celiac disease is well-controlled. Good control is demonstrated by the complete resolution of symptoms (diarrhea, other symptoms of malabsorption or DH skin rash) and a normal or nearly normal tissue transglutaminase level (IgA tTG). At that point, under physician guidance, the gradual addition of pure oats up to 50 grams/day (a little more than 1/2 cup rolled oats or ¼ cup steel oats) from a dedicated gluten-free facility may be attempted. Follow-up with the patient’s gastroenterologist should occur three to six months after the addition of oats into the gluten-free diet."
- The North American Society for the Study of Celiac Disease released a statement about oats that includes the following:The decision to include any type of oats in a patient’s gluten-free diet should be discussed with the patients’ doctor and dietitian and should include monitoring of anti-tissue transglutaminase (anti-tTG) antibody levels before and after their commencement. Persistent or recurrent symptoms should prompt an assessment that may include an intestinal biopsy.
For the complete statement, go to:
- Celiac Disease "runs in the family". Celiac specialists recommend that at least all first-degree relatives of anyone with CD should be tested. This includes parents, children, brothers and sisters. Ideally, second degree relatives should be tested as well.
- The University of Chicago Celiac Disease Program has an annual free screening day that may help with getting family diagnosed. Registration for the event typically starts in September, with the screening day in October.
- If you continue to feel bad on the GF diet, the following page has links to information that might be helpful:
Gluten Free and not well?
- The book "Real Life with Celiac Disease" is highly recommended.
- The Catholic church requires at least some wheat in their communion hosts. A "low-gluten" host has been developed. It is not gluten-free. According to the website of the nuns who produce it, is contains less than .01% gluten (i.e., less than 100 ppm). "Gluten-free" is less than 20 ppm. Many other denominations allow rice hosts.
- Note from editor regarding cosmetics/hair products: I have read countless times that the gluten molecule is too large to be absorbed through the skin. This may be true, but consider the chance of getting some cosmetic product in the mouth (or on the hands and then into the mouth). Beyond the concern about possible accidental ingestion, there are also a number of cosmetic products that use "hydrolyzed wheat protein", or "hydrolyzed gluten protein" which is typically partially (but not completely) broken down gluten. These small pieces of the gluten protein may well be absorbed by the skin and interact with the immune system. So, it is probably worth getting out the magnifying glass and checking the ingredients of soap, shampoo, conditioner, styling cream, and cosmetics and replacing those that contain gluten in any form. I do not have definitive proof to offer, just suspicion based on my increased neurological symptoms after using a styling cream containing hydrolyzed wheat protein. This article (Gluten Free Shampoo and Conditioner) gives a list of ingredients that indicate gluten.
1. Safety Assessment of Hydrolyzed Wheat Protein and Hydrolyzed Wheat Gluten as Used in Cosmetics (draft with interesting commentary).
2. Final version of the above publication
3. Gluten Quantitation in Cosmetic Products by Enzyme-Linked Immunosorbent Assay. 3.
- There are now many gluten free forums, blogs, facebook pages, etc. The original national Celiac Listserv is still there but not very active. To join the list or read the archives, click here.
- The excess cost of gluten-free food is tax deductible if your medical expenses exceed 7.5% of your adjusted gross income (IRS Pub. 502). You can also use Flexible Spending Account funds to buy GF food.
- You can call manufacturers and ask about the risk of cross-contamination in their products. Most packaged foods have a toll-free number on the label, and the customer-service representatives are often able to answer this question.
- Spelt is a form of wheat, it does contain gluten, and is not safe for the gluten-free diet.