I just came back from the meeting with gastroenterologist (in Dutch: maag-darm-leverarts (MDL-arts of gastro-enteroloog)). It was my 1st visit after 10 months and 3rd in general.
Pitifully, I haven’t taken photograph of the blood work I followed prior to the meeting but the list was long and I had almost 2 pages of tests. Next to the antibodies, the vitamins (like D, from group B) and minerals level was analyzed. (Ten months ago I had the functioning of my liver and bone density checked as well).
I don’t have to tell you how nervous I was to hear the results despite the fact that I do my best to eat right. As I am fully motivated to heal and improve the quality of my life – I am driven to stay away from everything that might compromise my way to recovery.
For the last year I followed a strict gluten free diet and I strongly avoided chances of gluten contamination. I can count how many times I have been eating out and when I did go out I was sure it was a reliable place to eat (gluten free restaurants and family that knows very well how to cook safe for a Celiac). Besides, I don’t buy food products that ‘may contain traces of gluten’. Most of the processed food I buy is certified gluten free.
So what was I afraid you might think, right? Well, as I react strongly on many other non-gluten food products, like certain grains (full grain: buckwheat, millet, some types of rice), dairy, dry fruits (or rather sulfite that they are covered by), strawberries, processed GF meat and many synthetic food additives and process aids, I was expecting that it will somehow display in my results.
It didn’t. The tests on antibodies were negative (hurraay!). There is no sign of antibodies in my blood. The level of minerals and vitamins tested was within the standard range. The hard work paid back.
But what it means and how not to over interpret the blood results?
Lack of antibodies doesn’t mean that I am inflammation free. It just says that there is (most likely) no exposure to gluten. As I have discussed it with the doctor, the test for antibodies is an indirect way to have an insight into the situation taking place in the intestine. It also doesn’t mean that my intestines healed. Actually, the biopsies performed on patients with Celiac disease in The Netherlands showed that after following a strict gluten free diet for even 5 years some patients still had damage of 3rd degree in Marsh scale in their intestines. For very high percentage of Celiac patients it showed that the mucosal membrane is never inflammation free, even if there is no exposure to gluten (ref). Following strict gluten free diet and being free from antibodies does not guarantee that a patient with celiac disease will not develop other autoimmune conditions, like for example diabetes. The autoimmune diseases are genetically driven. To look into the actual recovery of my villi we decided to perform a second biopsy. Not yet, only in about 2 years as most likely not much changed inside of my intestines for the last 1.5 years.
I was hoping for a bit more interest towards my multiple food reactions. For example, I thought we would test if I was intolerant or allergic to dairy. But I heard only that it is not unusual for people with celiac disease to have multiple food reactions and that it belongs to the overall IBS syndrome.
‘Irritable bowel syndrome (IBS) is a functional gastrointestinal (GI) disorder, meaning symptoms are caused by changes in how the GI tract works. People with a functional GI disorder have frequent symptoms; however, the GI tract does not become damaged.’
What I can do is try to exclude the problematic ingredients from my diet. It is possible that FOODMAP’s free diet could bring some relief but it is a difficult one (duh). I had an impression that the doctor wasn’t very interested in how to improve my well-being or didn’t believe it was possible. Currently, he is involved into a study on the quality of life of patience with Celiac disease in The Netherlands. There are about 300 patients involved. So far, one thing is clear – there is a high percentage of patients who are not satisfied with their healing progress. Meaning, celiac disease is still relatively young disease, especially the diagnosis of adults. So far, doctors and scientists have a little understanding of the exact triggers and adequate therapy for our disease. Further research is carried out.
Oh yes, I also asked about the fertility of female celiac patients and the common pregnancy complications. And that too is still an unknown area but I have heard that I shouldn’t worry about that. For now, doctors relay on the study that showed that there is no proven link between celiac disease and fertility problems. Now, tell that to all the brave women who went through so much to bring their children to this world and the crowds of the less fortune women who didn’t succeed.
So there it was, an update of my medical history. The next visit by the gastroenterologist – in about a year. I am free to initiate an earlier meeting if I find it necessary. And in a meantime, regular control visits by Internist to monitor the thyroid hormones every 2-3 months.
I am going to bake a gluten free cake now. To celebrate the lack of antibodies :D