Does It Ever End?: Celiac Disease The Later Years

What? You thought I was talking about my posts? How very cruel dear reader, surely you’ve realised by now this is your atonement for a previous life, forced forever to read my outputs. I’m just not sure what I did to deserve this! I joke because I’m going to talking of something serious, not haggard face and knitted brows serious, have no concerns on that part, just something that requires me to place my thoughts and experiences in some semblance of order and make them clear to all reading this. Seriously, what did I ever do to you?! Heh. Onwards to hopes for clarity and way too many words.

Okay, I’ve spoken before on the stages of coeliac disease and how after the initial stages you’re often thrown from the nest while there’s still shell in your hair. The world doesn’t care about you or I if we’re in any way troublesome. Still struggling after your initial diagnosis? Are you eating gluten free? Then out you go and don’t come back. At-least that’s how it often feels. Don’t worry, I and many others care, it’s why I’m here to talk to you, without the indirect help and my own strong willed obstinacy I wouldn’t be here, morbid sure, but true. Now, let’s talk about poop.

Poopy poop poop. Poop. What?! You’ve never seen a blogger slowly succumb to insanity? I’m putting this out here for a later point. Firstly, the place I’m looking at and have thankfully since past, is the point when you’ve gotten a hold of the diet, you understand it as best you can, you’re eating what you’re supposed to and avoiding what you have to. Now, perhaps you’ve been getting glutened, that happens. But, here’s where a problem occurs. I see it all too often.  Now I will say this, in not so kind terms because I learned it the harsh way and it’s the way I’ll state it, you better make damn sure you’re rigid in your diet. Make sure there’s no chance of cross-contamination, no guessing, no stupid mistakes, if you’re not then this part isn’t for you. Screw up and learn and that’s okay, but be sloppy in the care of your health and I have no tolerance or time for you. So, say you’re gluten free safe and relatively happy, but you still have reactions or what seem to be reactions to certain foods. You go to the specialists or Doctor, witch or GP your choice, and ask why. Then they just give you the same spiel, avoid gluten etc. But what if you’re still struggling? What then? Now, before the next part know this: I’m not a doctor or any kind of professional in any way shape of form, just someone who know the struggle and the enervating feeling of hopelessness that this type of thing can cause, the following isn’t a guide, just a gentle nudge into a direction of investigation you might wan to look at. What you do is on you, I take no responsibility. I’m doing his because I know the hurt it causes to be sick when you just started to get well again.

I’ll also say all of this is just my experiences detailed and generalised, if you panic over it, I had that done to me, then that’s also on you. Every celiac is different, everyone will follow a slightly different path and there’s no catch-all guide to help. What I’m putting down here isn’t going to happen to you guaranteed, but maybe it will. So you’ll be better knowing a little and being prepared. I had scaremongers make me believe that everything was going to happen to me that happened to them, that’s irresponsible and disgraceful. There’s just sometimes more to being a celiac than going gluten free. These are just a few things to ponder.

Poop! No one like taking about excrement, that’s understandable. What will happen to you as you change you diet is that your body will react in a multitude of different ways and you’ll have to learn what’s a problem and what isn’t. The thing about dookie is we don’t necessarily know what’s healthy and what’s not. I don’t want to spend all day talking about crap. So, two things helped me identify a problem passing stool. First the texture should be like toothpaste, that really makes it hard to brush your teeth but so helpful, the second, it shouldn’t be a strain. Regularity differs between people, as does colour etc, these two pieces of information can help you establish if there is a problem with the poopy. Now let us burn this paragraph and move on. The things I do for my dear readers.

Fibre and Water. I think one of the most over looked parts of starting a new diet is what you’re taking in at the nutritional level. Now I’m not here to spell out what you need, but instead to talk about the side effects of food. If you increase your fibre, you might do this without realising it, replacing your usual food with healthier options, or worse: highly starch-ridden foods, this will have an effect on you and here’s the kicker: All stomach troubles will feel similar to glutening. So, here’s where you’ve identified that it is or isn’t glutening, but still feel bad. I see it a lot, a coeliac starts on high fibre foods, way too much and bam! Stomach pain, gas, cramps etc. They for help and get told to avoid gluten then get blanked when it’s established it isn’t gluten causing issues. The thing is fibre should be matched with water, lots of water, and kept in balance with everything else you eat. I took me years to really balance my diet, but if you’re only blaming gluten and ignoring symptoms then you won’t get better.

Other issues. I have three major food issues, I’m not reiterating them, but you have to look at everything you eat, for years like me probably, slowly weed out the bad and keep adding the good. It means sacrifices, big ones and a lot of contemplation and research. You see the problem is if a expert on coeliac disease is asked about nightshade intolerance they’ll either have no idea or worse get stroppy and deny it. It happened to me every step of the way, so I had to suffer and pick away at the pain, always looking to be better, it’s slow, but you get there if you’re willing to work at it.

Oh, dear, I’ll feel bad, but this part is true. Some Gluten Free Food is no better than junk food. What I believe to be best for any diet is the least processed and the least additives and unnecessary ingredients possible. We could get into an argument about time and convenience, but it boils down to this: You want to be better? Eat better. If you can’t have elaborate meals with an assortment of ingredients then eat simple, but healthy and varied. I make sweet potato fries with sweet potato oil and seasoning, right? I’ve seen frozen ones with gums, starches, E numbers and awful things, I’d say give up the fries if you’re only going to eat the frozen junk. Instead just boil the potato and eat it, hard to do, but better. So much better. I’ve been there and made that choice. The experience I’ve gained helps me eat well without much hassle.

There’s no such thing as perfect. You will have off days, bad days, damn near despairing days. They happen, they’re not often your fault and if they are then stop them, if they’re not then don’t let them crush you. You have issues, you’re allowed to say that, to accept that you have an additional struggle. There are those that revel in the attention, this isn’t for them, it’s for those who are striving for normalcy and will curse themselves whenever they fail. If you’re not the same as everyone else then you don’t have to apologise when you don’t match them, no matter how they may make you feel you have to. Just try for happiness, perfection is overrated anyway.

That doesn’t cover everything, it’s just my contribution to helping others. I only know what I’ve learned and experienced. I don’t know how useful these posts are, I just wish I had had more of them when I was struggling. It’s ultimately up to you, if you rely too completely on others you’d better be prepared to fall, a lot. But if you’re willing to work at it, rolling the boulder uphill everyday, as it’ll often feel, then you can be better, feel better and get better. As for me, I’m far better than I ever was and I’m still striving to be better happier and many other things. So, I’ll see you again with a new recipe. Take care, dear reader.

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8 thoughts on “Does It Ever End?: Celiac Disease The Later Years

  1. Brilliant post!
    What helped us at home to figure out what foods were offending my husband’s system was keeping a journal of every single thing he ate or drank. We did that for a couple of months, also jotting down the reactions (or lack thereof) he had once the digesting process reached his guts. This was a constraint for sure but extremely helpful. In the process, I also learned that it takes about 7 hours for food to reach our bowels. Which explained why my own belly issues (hey, neighbor, today we are talking real !) started after lunch every day. I used to think I was having problems with the school lunches, when I was actually triggering them from breakfast time!
    About the poops. Hum. Yes, they are a very good indication of how well you are. Thank you for remind us all about our water intake.
    One last thing: neither of us are celiac, “only” intolerant to gluten among other things. But now that I eat gluten-free I find that I tolerate less and less of the glue stuff. What makes it easier for me to say “no” to gluten-full cakes, bread, and other wonderful French pastries is the certain knowledge that any indulging will come with a painful price… you see, it’s a little different for my husband’s sulfite sensitivity: if he has a little, it will trigger asthma, but then he can always use his inhaler. Of course, if he goes overboard, like he did when we visited our kids in the U.S. last fall, then it’s a lot worse and then he is sorry. What I’m trying to say here is that it’s all a question of choice and how much we value our personal health.
    I am being long-winded today, dear neighbor, hoping to be of help to your other dear readers!
    Take care.

    Liked by 1 person

    1. Thank you for taking the time to share and help others. I’m glad I’m not the only one who has gone through this and that my ramblings are relatable. I see so many still struggling and not getting the help that’s needed, but if people like you and I continue to speak they’ll hopefully find us and the help they need. Take care, dear neighbour.

      Liked by 1 person

  2. Hi again! I just remembered, aren’t you planning surgery some time this year? And if so, are you worried about the food you will be fed in hospital ? That is one of my fears: when I get old and put in a retirement home, the food will kill me 😟

    Liked by 1 person

    1. I’m still on a waiting list, as to when, no one really knows sadly. I thought about that as soon as the waiting began. I decided on freezing quinoa or something similar, mixing up some tahini or nut butter dressing and storing it in the fridge and having someone cook fresh chicken. It can all be eaten cold so there’s no fear there. It might be dull, but it’ll keep me going. The stay will be short after the surgery from what I understand. I also thought of fruit and nut packed muffins or breads that could be bagged separately and frozen then brought to me in the hospital. Thankfully there are a lot of simple recipes that store well. I hope that like my own father you’ll be looked after at home if needs ever be. I’d hate to see one of my dear readers left in a retirement home. If all else you’ll just have to print off all your wonderful recipes and make it the most culinary-advanced retirement home ever!

      Liked by 1 person

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