Celiac Disease
We met with Luke’s doctor yesterday to review his lab results. Luke has Celiac Disease. I was completely shocked when I heard this. I fully expected the tests to show he had non-celiac gluten sensitivity, but I was not expecting full blown Celiac Disease. The good news is that his serologic testing was otherwise pretty unremarkable. There are a few foods and spices that he showed very low reactivity towards. But it is anticipated that no other foods will be a long term problem for him.
What does this mean for Luke?
There are a couple ways to look at this diagnosis. This is bad news for Luke because he is going to have to deal with this for the rest of his life. There is no cure and no treatment. The only course of action is to go on a strict gluten free diet. This seems very challenging, but I feel like we have been prepared for this diagnosis with all of the research I have been doing and sharing with Lisa and the kids over the past couple of months. So I don’t feel like it is as overwhelming as it could have been.
It is also a blessing in some ways. This diagnosis explains many of the challenges Luke has been dealing with and it also provides a clear path to help him overcome those challenges. Luke has also been prepared for this diagnosis. He has been amazing over the past few months as he has had to deal with attending neuro feedback sessions twice a week, performing heart math every night, taking multiple medications and supplements every night, taking a probiotic every morning, and not being able to eat the same food as everyone else for the past 6 weeks or so. Luke has handled this with a great attitude, willing to do whatever he is asked to do even though it is hard and has become monotonous. Lisa and I have been very proud of him.
Celiac Disease
The rest of this post is to educate Luke and Lisa and Luke’s siblings and anyone else who really wants to understand what this disease is.
There are 3 million people in the United States with Celiac disease. This affects 1% of the population.
Celiac disease is an autoimmune disorder. Antibodies are normally produced by the immune system when the body needs to fight off an infection. But having an autoimmune disorder means the body develops antibodies that attack and damage its own tissues. Other common examples of autoimmune disorders include Rheumatoid arthritis, lupus, Inflammatory bowel disease, Multiple sclerosis, type 1 diabetes, Psoriasis, Graves disease, and Hashimoto’s thyroiditis. Having Celiac disease does not mean Luke will definitely develop any other autoimmune disorders but he will be more likely to do so when compared to the normal population.
In Celiac disease, the trigger is eating gluten, meaning anything made from wheat, rye, or barley will result in the body attacking its own tissues.
The antibodies attack and damage the small intestine villi, which are small finger-like projections found along the wall of the small intestine.
This damage to the villi results in an inability or decreased ability of the small intestine to absorb nutrients from food. This can lead to malnourishment and a host of other problems. This can also cause permanent damage if the small intestine villi continue to be exposed to these damaging antibodies.
Common gastrointestinal symptoms associated with Celiac disease include diarrhea, constipation, abdominal pain, nausea, bloating, pale foul smelling stools, and weight loss. Luke has definitely expressed the symptoms of diarrhea, constipation, and abdominal pain on a very regular basis.
There are also common non-GI symptoms that are harder to explain but well established. These include headaches, fatigue, lack of focus, ADD, irrational anger, irritability, mood changes, rashes, and joint pain. I think we can confidently conclude that many of Luke’s behavioral issues are a direct result of his previously undiagnosed Celiac disease.
There are 3 specific blood tests that are used to diagnose Celiac disease. Luke tested positive for the Anti-Deamidated Gliadin IgA test in samples sent to 2 different labs. Normal ranges at both labs are below 7. Luke’s level at one of the labs was 21 and his level was 30 at the other lab. These are not borderline numbers. He has it.
The gold standard test is actually a biopsy of the small intestines, but I do not feel like we need to get this test. The lab results seem definitive.
Celiac disease is a genetic disease, so there is a very good chance that me or Lisa and possibly some of our other kids carry one of the two genes responsible for this disorder. 95% of people with Celiac disease are positive for the HLA-DQ2 gene. The other gene variant is HLA-DQ8. Just because you have one of these genes, however, does not mean you will develop Celiac disease. 30-35% of Caucasians are positive for one of these genes, but only 1% of people develop the disease.
Luke’s future
Luke will need to be on a strict gluten free diet for the rest of his life. We will figure out how to do this and he will be fine. He will also be taking a couple extra supplements for the next 30 days or so that will help his small intestines to heal. One of those supplements comes in powder form, so I have created a shake that he will eat every night that includes all of his supplements and medications. This will actually work better than what we have been doing since he is not able to swallow a pill. When he ate his shake tonight, he loved the taste and drank the whole thing during dinner.
Luke will go on an elimination diet for the next 30 days. During that time, we will be restrictive about what he can eat based on those other foods he had low reactivity towards. After those 30 days, we will start to re-introduce those questionable foods one at a time to see how he reacts to them. I anticipate he will do fine on all other non-gluten foods.
We will return to his doctor in about 6 months to have repeat testing that should confirm that he has less antibodies towards gluten and that his gut is healing.
We will monitor how he is doing, realizing that it may take several months for his problems that were caused by gluten to heal, but hopefully we will see some results in his GI issues and other problems in the near future.