Testing Family Members
Once you have the diagnosis of celiac disease, one of the hardest things is helping family to understand how important it is for everyone to be tested. You don’t have to have symptoms especially obvious symptoms, in order to have active celiac. Many family members are resistant to having the testing done, because they think they can’t have celiac or it is mild if they aren’t having symptoms.
Symptoms are NOT an accurate measurement to how serious your celiac is! Many with no symptoms have serious intestinal damage and it can be more severe than the person who has chronic diarrhea. Many are afraid of what they have to give up and don’t want to deal with it, until they have to. I wish more family members understood what a mistake this is. Untreated celiac has so many health risks. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-complications
Issues and Risks
Some of the issues to be aware of are: cancer, osteoporosis, iron deficiency, malnutrition, infertility and other auto-immune diseases. The risk for some cancers is believed to be as high as 40-100 times greater risk. (If your celiac is left untreated.) You can find more statistics at this link: http://www.celiac.com/articles/1164/1/Celiac-Disease-Statistics/Page1.html Some studies have shown that the risk of cancer normalizes to the same as the rest of the population, when strict compliance to the gf diet is followed. Osteoporosis and iron deficiency often improve when the gut heals and the body can absorb the proper vitamins and minerals.
Family Members Who Should Be Tested
When a family member is diagnosed with celiac, every member of the family, should be tested for celiac, whether they have symptoms or not. 1st degree relatives are parents and siblings. There is a 1:22 chance of them having celiac, too. One study showed the prevalence to be closer to 1:8; more research in this area is needed. I have seen a lot of families have higher instances in their families. For example: I know a family with 7 kids; the dad has celiac and so do all of the kids. In our family, I have celiac and 3 of our kids have celiac and the other one is gluten intolerant, like my husband.
2nd degree relatives are grandparents, aunts, uncles and cousins; they have a 1:39 chance of celiac. https://www.verywell.com/celiac-disease-testing-p2-562734 Anyone in the family who has a lot of weird, reoccurring symptoms should be tested and/or re-tested. Anyone in the family who has had multiple and/or different diagnosis and doesn’t seem to be getting better, (Always has something going on with their health.) should be tested or re-tested. I have seen many groups recommend every 3 years, even if you aren’t showing any symptoms or sooner if you are symptomatic.
Negative Results Don’t Mean You Are Free And Clear
Many people mistakenly believe that since they have been tested and it was negative, they don’t have to worry about celiac. This is a phenomenon that I have heard discussed on-line and at conventions. It is widely misunderstood and people don’t want to change their diet; especially if they aren’t having obvious symptoms. Being tested and having a negative result doesn’t mean you are in the free and clear category. Especially, if you have a family member with celiac; it is genetic and it runs in your family. You most likely carry the gene and it can become active at anytime.
In another study, http://www.ncbi.nlm.nih.gov/pubmed/17380406 family members underwent regular screenings for celiac. Family members who initially tested negative, showed positive results through regular screening over a period of time ranging from 6 months to 3+ years. Most of those family members that later tested positive were asymptomatic; meaning they didn’t show the most widely recognized symptoms of having celiac disease. In fact, many patients reported no change in their symptoms or health over that period of time from the negative test result to the positive test result.
What to do?
Educate family members about celiac https://www.gluten.org/resources/getting-started/celiac-disease-2/
Give information about symptoms and how you don’t have to have symptoms to have serious damage from celiac. https://www.gluten.org/resources/getting-started/could-gluten-be-causing-your-health-problems/
Give information about risks http://www.celiac.com/articles/1164/1/Celiac-Disease-Statistics/Page1.html
Give information about testing https://www.gluten.org/resources/getting-started/celiac-disease-2/
*** In many, but not all families with celiac, there is a family history of thyroid issues.
***Because celiac and crohns share the same genes both diseases can be found in families. It is possible for an individual to have both celiac and crohns.