Autoimmune Disease is Limiting

Autoimmune Disease is Limiting

 

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.

62122-48d35e-499-433Why am I not an easy to fix patient?
  • 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.)

 What does my doctor tell me?struggle

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,

Kati xxx

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4 COMMENTS

  1. I’m so sorry to read this. But I love the fact that you write about it. There are (I think) plenty of people who do not feel super great after going gluten free. Even some who don’t feel good even after a lot of years. I think that for some bodies it ‘just’ takes a lot of time to heal. Super frustrating of course, because no one knows how long it will take and no one is a 100% sure if this is indeed the reason you still feel bad sometimes.

    Luckily I feel better now, but it took a long time and some extra changes in my diet (such as not eating stuff with maltodextrin derived from wheat anymore). Restricting my diet even more did not make many doctors happy by the way. They say this ”hyper sensitive thing” is so rare that it is very unlikely that I also could not tolerate amounts of gluten below 20 ppm, so this couldn’t be the reason that I still felt so terrible all the time. I’m happy I listened to my own body and not to my doctors…

    The only thing that still can be frustrating for me sometimes is that I get tired so easily in comparison to, for example, others in my class.

    Well, thanks for sharing all this. And I hope you feel better soon. Be kind to yourself although not being able to do anything you want sucks sometimes… Pushing yourself will only make it worse. Take care!

  2. I’m afraid you saw the film on my blog, isn’t it?
    I’m sory to read it stays in your head…
    Ik heb het filmpje geplaatst, juist omdat ik het zo ongelooflijk vind. Ik vind het (net zoals jij) fijn dat zij dat allemaal kunnen. Ik hoop dat mijn dochter als ze groot is, net zo min belemmerd wordt door haar coeliakie.
    Maar ik voel aan heel mijn lijf dat ik het niet kan… Als ik mijn dochter niet meer de trap op kan tillen. Als ik om half 9 uitgeput m’n bed in rol. Als ik besef dat mijn leeftijdsgenoten wel 5 verschillende dingen doen in 1 weekend (en ik toch echt keuzes moet maken. Maar aan de andere kant besef ik dat ik zo veel meer kan dan sommige mensen met coeliakie. Laat staan dan mensen met andere ziektes. En ik tel mijn zegeningen elke dag…

    • It is indeed that movie that made me think about it all. Whoever made it, most likely tried to motivate us, show us that we can do whatever we want. He failed a bit, at least with me. It is still difficult for me to fully accept all that I had to give up because of my health. I am also so tired of explaining and so embarrassed every time I have to disappoint someone because of my limitations. How can anyone who watched such a movie ever believe me? :(

      I hope it will be different for your daughter. I hope she will benefit from an early diagnose – when looking at the large picture of course. There is nothing beneficial about the disease ‘per se’. Wishing you all the best!

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