You should know that:
- Information about the gluten-free diet is here.
- The GlutenFreeIndy Community Facebook page has many recommendations for products and local restaurants. Please join!
- The best option for eating at restaurants is usually a place that has a gluten-free menu (or a regular menu with gluten free options indicated). The Find Me Gluten Free app allows you to search for restaurants with a gluten-free menu.
- Whenever possible, use products that are certified gluten-free or at least labeled gluten-free. You can find certified products and manufacturers at these sites:
GIG's Gluten Free Certification Organization GFCO Certified Products Directory
NCA-endorsed Gluten Free Food Program (GFFP)
- Medical experts have developed a list of best practices for Celiac Disease at diagnosis and during follow-up, which you can find here. Celiac Disease Foundation has converted this into convenient checklists, both adult and pediatric.
- 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. 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, you move to another state, etc. Keep a copy! You may never need it, but if you do, you have it! (And you are legally entitled to get a copy of any and all test results)
- 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. Beyond Celiac has created a resource to help talk to relatives about the need for testing, which you can find here.
- Imaware offers a home screening test for Celiac Disease.
- 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. Lactose is found in milk and products made from milk. Until this has a chance to improve, you can try using lactase supplements, have reduced-lactose dairy products, reduced dairy serving sizes, or avoid dairy completely.
- 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 temporarily to see if you feel better. Examples of these types of foods are soft drinks, orange juice, kefir, popcorn, and hot peppers or hot sauce.
- 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?")
- Probiotics and herbal supplements are frequently contaminated with gluten (See Published Drug Test Results). The safest choice is to avoid using them at all.
- Spices are also frequently contaminated with gluten (See Published Food Test Results). To help avoid contamination, use fresh herbs when you can. Here is a short video showing how to dry fresh herbs in the microwave.
- Spicely Organics has a full line of certified gluten-free spices. Some of their spices are available locally at Fresh Thyme and some are on Amazon.
- Lentils are frequently contaminated with gluten. Sorting through lentils and rinsing them well before cooking can reduce the gluten to undetectable levels. A brand of gluten-free lentils has recently become available:
Grainful Purity Protocol Whole Red Lentils.
- For sources of low arsenic rice, see the Arsenic in Rice page
- Consider membership in GlutenFreeWatchDog, which is the "Consumer Reports" for gluten-free food. Her most important findings are also published free here https://www.glutenfreewatchdog.org/news/
- Although the current gluten free diet consists of "no wheat, rye or barley", until fairly recently oats were also on that list and were not allowed on the diet. There are some major issues with oats that you should be aware of before adding them to your diet. If you do eat oats, they should be "purity protocol" oats. There is a list of purity protocol oats here: https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/
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:
- 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 Catholic church requires at least some wheat in their communion hosts. A "low-gluten" host has been developed that meets the definition of gluten-free (less than 20 ppm) and has been tested to contain 5 ppm or less: Cavanaugh Low Gluten Altar Bread.
- Low-gluten altar bread made by the Benedictine nuns has a claim on their website that it is less than 10 ppm gluten, however it has been tested to contain about 50 ppm gluten.
- 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 is true, but consider the chance of getting some cosmetic product in the mouth (or on the hands and then into the mouth). But 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 a good idea to check the ingredients of soap, shampoo, conditioner, styling cream, and cosmetics and replace those that contain gluten in any form. I do not have definitive proof to offer that hydrolyzed gluten can cause reactions, just suspicion based on my increased neurological symptoms after using a styling cream containing hydrolyzed wheat protein, and some reading below). 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.
- 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.