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Calling for Support for Two Young, Struggling Fellow Celiacs

Calling for Support for Two Young, Struggling Fellow Celiacs

First…just tons of thanks for your support and kind words last week. Seriously means the world to me. I can’t say I’m not still in a bit of a dark place, but I keep looking for the light. I’ll find it.

Speaking of support, I received two heartbreaking emails over the weekend from fellow celiacs who are seriously struggling. One is a middle-schooler and the other is in college. Here are their stories. Please offer words of wisdom/support/guidance/whatever. Many thanks in advance.

Email One:

I am in middle school and have celiac. I have chosen to still eat gluten without my mother knowing. I have lately had very hurtful pains in my stomach and my stomach hurts when i eat anything now, GF or not. I don’t want to eat GF because i feel like i wont fit in. Middle school can be rough and I finally feel like i’m not being teased or stabbed in the back. I don’t like eating GF. I always have the same things. I dont have more than 7 meals. My school has more options than that. My mom just yells at me for everything and i don’t know how to deal with it. So i dont eat GF and don’t care because she doesn’t care how i feel and just judges everyone. It’s so dumb. I know how bad it can be later if i don’t eat GF but whats the point of eating the same thing every day and never feeling full when i eat GF? And i can’t eat more because i have to limit it. Whats your opinion?

Dude response: I’m real sorry about your struggles my fellow celiac. My mom yelled at me a lot when I was your age too. So not fun. Of course, now that I’m older I realize some of her frustrations with me came from a place of love. Perhaps your mom is feeling the same way, but like my mom, doesn’t have the best way of presenting it. Perhaps you could talk to her or another family member to help calm things down a bit.

Regarding eating gluten, I know it seems like the easy way out. Please don’t do it. Don’t put anything harmful in your body. Gluten is harmful to you and it will only get worse if you continue. You deserve to feel good. As for being teased, yep…been there too. Just know that the people who are teasing you are bullies and aren’t half as strong as you are. Hold your head up and be proud of listening to your body.

Email Two:

Hi Gluten Dude,

I’m sorry if my writing is a little stilted and off at the moment; I’m going through quite the tough time with my health, and the majority of my symptoms are neurological. Just forming my thoughts and feelings into sentences is quite the struggle at the present.

I am a 21 year old student that was diagnosed with coeliac when I was 19 years old, after 2 or 3 years of what I can only describe as literal hell. My last two years at school, which were supposed to be the most important of my life, were plagued by the most traumatic symptoms of extreme fatigue (you know the kind, the kind where the word ‘tired’ doesn’t even begin to explain it. Where your very soul feels weary.), brain fog and as a result of those things, deep, deep depression. My hair was falling out. My skin was grey. My nails were brittle. I went from being a happy, intelligent, quick witted, sociable person, to being a shell of my former self. It baffles me that nobody could see that something was wrong. One of my main struggles was with socialising. I used to be able to talk to anyone about anything, but I began finding myself being lost for words, feeling unenthused and flat, feeling completely blank, having little to talk about and struggling through conversation. I was known for being a talker all throughout my life up until that point, it was a signature part of my personality, that I could talk quickly and freely and inexhaustibly. I would constantly be in trouble at school for talking during lessons! I had lost my quick wittedness and my entire personality. I didn’t know who I was anymore and thought of dying frequently.

I was finally diagnosed after years of just thinking I was deeply depressed after I was tested for anemia, and was found to have severely low levels of iron in my blood. After going gluten free and taking iron supplements I definitely felt a million times better, and for a few months felt 90% like my old self and much much happier. I was so relieved.

Fast forward a few months and I began to feel the ‘blankness’ or what I think could be described as ‘brain fog’ coming back. Of course doctors just said I was depressed. Ever since, for the past few years, I’ve been on and off anti depressants, and am more like my ill coeliac self than my former self. I get days where the act of talking, of moving my lips and making words form feels like too much of a struggle. its hard to even socialise with people that I consider close friends. I withdraw from them because I feel bad that they have to spend time with someone so utterly dull. Sometimes this ‘fogginess’ comes over me so quickly. I could go to bed feeling fine and wake up feeling like i had eaten an entire loaf of bread (when I most definitely hadn’t been anywhere near gluten). After a period of time where I also had symptoms of tingling hands and feet, I had repeat endoscopies and blood work and everything came back fine.

I used to be extremely smart, I was always top of the class and now it is a struggle just to form a grammatical sentence, let alone have any kind of analytical or creative thought. I am worried about completing my degree and I am scared that I will never be fixed and my old self again. At the moment my symptoms are particularly cruel, as I will have days, sometimes multiple in a row where I feel near enough ok, bringing me hope that I am completely better, and then the next day or sometimes all of a sudden I will descend into a deep mental fog and be incapable of simple tasks again.

I think it is possible that I was coeliac for a lot longer than when my symptoms got severe. As a baby I was frequently ill with diarrhoea, and as a child had an instinctive aversion to food made out of wheat, like pizza and donuts. Even when I was ‘happy’ and feeling healthy, I’ve always had problems with getting really breathless and faint after exercise (i thought I was just unfit but this completely lifted after dx), and being super forgetful. I worry that I was being damaged for so long that my brain has been damaged in the process, do you know if this is possible? I am aware of Gluten Ataxia and whilst it would be great to have an answer to why I feel so crappy, the thought that I might have permanent brain damage is extremely distressing. My symptoms also don’t quite match up with typical Ataxia.

I’m completely miserable and need some reassurance that it will get better. I am incredibly careful with my diet and no longer eat out. I have tried the GAPs diet to some degree of success, and basically only eat a diet of protein and vegetables. I am sick of doctors telling me I am just depressed. I don’t need them to tell me that, i know I am very depressed but no matter how much I insist that there is something underlying going on that is causing me to feel this way, all they ever do is do blood work, which always comes out clear. I know my body, and this fog and depression feels like a product of something physical rather than just psychological.

I need some reassurance from the Coeliac community that it will get better. The thought of spending the rest of my life as a lonely, depressed, stupid hermit is too much to bear. I won’t be able to hold down a job or a romantic relationship if this persists. I wonder if I have another autoimmune disorder, but my only symptoms are this persistent brain fog, depression and fatigue. If you have any tips or advice as to what might be wrong and how to fix it, please let me know. If anyone has been through this and has come out the other side I would love to hear your story – hope is what is keeping me going.

Dude response: It WILL get better. Don’t let any lazy doctor pin it on depression. I’ve heard this far too many times. Keep trying different things. It took my years to begin to heal and even then, I still struggled. And yes, seven years later, it ain’t all roses still. I’ve had lots of success with both the Whole 30 and the AIP diets. Maybe give those a shot.

I promise you. You CAN live a happy and fruitful life with celiac disease. You WILL come out of this on the other side. Many of us have and you will too.

Folks…the floor is all yours. Any support for these two would be appreciated.

#NoCureNoChoice

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