One of my new year’s resolutions is to be even more grateful for the smallest things. It is, nota bene, a wonderful technique to decrease depressive moods. I want to think how lucky I am and not how gluten free lifestyle restricts me. So I do. Most of the time. But I couldn’t stop thinking of something I read the other day.
I read how other people achieve impressing things despite having celiac disease. My body, however, rather restrains me from reaching my goals. There are also people with Hashimoto’s who seem to do fine. I don’t do fine. This provoked a brainstorm in my head.
- Is my autoimmune system ‘broken’ more than of an average person with celiac disease?
- Did I carry around celiac disease for so long that it caused so much damage to my body?
- Does my lifestyle require more changes than just a diet in order to recover?
- Do I suffer from other conditions that weren’t diagnosed yet?
What to do
If you are like me, diagnosed with more autoimmune conditions than celiac disease only, and not fully recovering despite your treatments and strict diet – you are probably full of questions.
- Shall I push myself further and pretend that everything is alright?
- Shall I ignore the signs that my body sends me?
- Shall I continue the hopeless search for a good doctor who will help me?
- Are there qualified doctors who can help me?
- Shall I keep spending money on private doctor visits and body tests?
- Shall I give up?
‘Doctor google’ suggests a couple of other autoimmune conditions that could be responsible for some of my symptoms (next to celiac disease). It is clear that a gluten free diet only doesn’t help. I have zero antibodies and still some of the symptoms remain.
(I don’t usually recommend ‘doctor google’ but he did help me with diagnosing my Hashimoto’s. I felt really sick, doctor told me to go on holidays and have a rest. Instead, I googled my symptoms and I went to test myself. The test came back positive.)
My leading gastroenterologist says that this is normal. It is a part of my IBS condition. Medical professionals and researchers in The Netherlands currently do a study on how celiac disease limits the quality of people’s life. Would they run such a study if everyone felt great when following a gluten free diet?
It makes me feel uneasy when I read about people whose lives aren’t affected by celiac disease other than the dietary restrictions. First of all, I am very happy for them. Also, I understand the need of being optimistic and to spread positivism. Just, this is so different from my own experience. Much different. It doesn’t make me feel any more positive, it makes me feel worried. I worry that there is something wrong with me because celiac disease changed the direction of my life a lot. I don’t find it easy to open up to others about how I am feeling. I am scared to be judged and I don’t want to burden others with my problems. Blogging is a way to share my most private feelings and struggles in order to gain some understanding. Now, I am scared to see judgmental looks from people when I am not capable of doing something that they expect from me. Who can blame them? They read stories saying that celiac disease is such a piece of cake. Perhaps for some it is. But I want to make it clear that it isn’t for all of us.
Wishing you well,