Celiac Disease: The Cycle from Hell

vicious celiac cycle

Celiac is such a strange little disease. You can go stretches where you feel totally fine and you find yourself thinking that you’ve got it all figured out. You’re like “Finally!”

But then you get hit by god knows what and you become a prime candidate for the “Miserable A**hole of the Month” Club.

It’s celiac disease’s way of saying “Hey…I’m still here…and I always will be.”

It’s pretty simple…we can never let our guard down….ever. And even when we don’t let our guard down, we can still get hit with “that feeling”. Sure there are worse things in life, but still not an easy thing to live with.

I was reminded of the frustrations of living with celiac disease recently by the following three examples.

Example #1: I’ve been feeling great for the past month or so. No stomach issues. In and out of the bathroom without getting through War & Peace (twice). No brain fog. No irritability. Just…normal (if I remember correctly what normal actually means.) But Tuesday, out of nowhere, my stomach was “off” and last night I had the alien popping out of my stomach pain. And today? Well, we’ll see.

Example #2: I received an email from a teenager with celiac who is really, really struggling. She says:

I’m 17 years old. I started the gluten free diet last month and still can’t see any improvements. I’m going nuts!! I’m really really stressed. I don’t know how to calm down. I hate this disease. I don’t have anybody’s support; this is a very lonely disease!! My mother just gives me the money to buy my food. I keep everything separated but I feel so lonely. I feel nobody takes me seriously!! And there is gluten all around the house, everywhere!! They don’t respect me; I’m so angry!!

Sometimes (every day) I feel I wanna give up, I wanna die, but I still have a little hope! It’s like I wanna die but I actually don’t wanna die. I don’t know how to express it. I hate eating and cooking, I hate everything!! I don’t wanna worry about food anymore.

I got glutened this week, after I saw a little improvement. I ate a cookie. I know I shouldn’t have eaten that cookie!! But I felt tempted and very, very, very sad that day. I feel very very bad now. I’m sick of being sick!! I wanna heal, I lost a lot of weight. Everything’s a disaster. I need help.

How many of these types of comments have I posted over the years? Why is it that our disease simply does not get the respect that it deserves? Argh!!!!

I responded to the above person as follows:

Try your best to be as patient as humanly possible. It can take much longer than one month before your body starts to heal and you begin to feel better. If I can recommend something…try to eat very, very healthy for a few months to give your body the best chance to heal. East mostly whole foods (meat, fish, veggies, fruit) and stay away from the processed gluten free food (what I call “replacement foods”) at least for a little while.

Don’t beat yourself up over the cookie. It happened. Move forward (but please don’t do it again). The sooner you can accept you’re gluten free for life, the sooner you will begin to mentally move forward.

Keep the faith. You will heal. You will get your life back. I promise.

Example #3: I wrote a blog post some time ago titled “I Don’t Want Celiac Disease Anymore“. It must not have been one of my better celiac days. Anyway, someone left the following comment on that post:

I’m having a really tough day (actually a rough few weeks). As much as it sucks, it feels good to know that I’m not the only one who feels the need to rant. After being diagnosed it felt like a huge weight had been lifted from my shoulders but the recovery process is a whole new ball game that I did not expect!!

Normally I’m quite positive and optimistic that I can do this and fight anything that comes my way. But right now I feel broken and defeated. I really did not ask to have celiac disease and I’m doing my best to deal with it. But I’m starting to think my best isn’t good enough…When I start feeling normal and healthy something always comes up and knocks me back down.

It’s a vicious cycle with no rule book!

Ain’t that the truth.

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14 thoughts on “Celiac Disease: The Cycle from Hell”

  1. I understand and feel your pain (literally). I have done really well in keeping to my diet but even that doesn’t always make me feel great. I still get that feeling too. But one thing I keep telling myself as a way of encouragement that works for me, at least most of the time. Before I was diagnosed I felt even worse and there were many more symptoms I had that I no longer have since going gluten free. In addition, I was sure I had cancer and it terrified me. Finding out I had celiac was a relief.
    So I remind myself that I do feel better overall and most importantly, I don’t have cancer and I’m not dying. This keeps me going by trying to find the positive in an ongoing, never-ending disease that I have to live with the rest of my life. It’s not easy and doesn’t always work but I keep saying it to bring myself up when I feel like crap.
    Hang in there, stick with the diet and be strong! Find support online – sites like this are gems as they show the real side of the challenges and facts, not just a glamorized gluten free life. Find a way to help others in the same boat as that is so rewarding.

  2. I hear you completely! 6 years since diagnosis I was told that my intestines had FINALLY healed and my “celiac is in remission”..BUT not being told how to heal properly or how to fix all of my symptoms has left me with issues that I am just now working on resolving with a Functional Medicine Doctor…I got sidetracked for 2 years dealing with cancer and all of the gifts the treatment left me with (i.e. another autoimmune disease)..but I keep on truckin’. Keep the faith Dude, we can all feel your pain.

    1. Hi Maureen!

      It is so frustrating that there is not more research done on this disease post diagnosis. I guess we should all be thankful when the diagnosis comes after years of suffering but then we’re left essentially rudderless after that. All one needs to do is read the comments after Gluten Dude’s recent post about this to see how much of an issue it is. I would love to see a functional medical doctor, and do believe that would help, but alas, insurance won’t touch that with a 10 foot pole! 🙄 ~ Jennifer

  3. Elizabeth Nemeth

    I was diagnosed with celiac almost 2 years ago….after 6-8 years of severe pain, lethargy, brain fog, mouth sores, an ulcer, vertigo, daily migraines for years…I could list 20 more awful symptoms. And after 6-8 years of bosses and co-workers snickering behind my back and saying I was lazy and lying. And I could list 10-15 drs who never had a clue and told me I just needed anti-depressants to feel better. Every day I feel grateful I have my health back, but I also hate this disease. I’m high strung to begin with, so adding a disease which requires hyper vigilance that never ends is a tough pill to swallow. (And don’t get me started about trying to find GF meds!). There are days that are easy. There are days that are hard. There are days I cry over my lost ease of life. There are days I am so angry. There are days I’m jealous of people who just eat what they want. But even with all that, I’m so grateful to feel and be healthy again. I will never take health for granted again and I do what I can, EVERY DAY, to remain as healthy as I can. Celiac tried to take my health away, but I didn’t and won’t ever let it.

    Celiac is hard. But it gives us a gift few others ever get: (1) a crash course in perspective on what really matters (hint, pizza, beer and bread don’t matter, health does); (2) a fast way to winnow out the bad and selfish people from the really good and great people in our lives; (3) a reason to focus on health; and (4) an appreciation and profound gratitude for all the great things we can have (like tequila! 😁)

  4. I was diagnosed 10 years ago last month. A health care provider learned of my celiac diagnosis in January and said that must be hard. I though for a minute, then said no-my other health issues are so much harder. Celiac gets better, there are the fears of glutening, its fallout, and the frustration and grief associated with the lack of freedom to go anywhere and eat anywhere without pre-planning. Not to mention lack of menu options. But overall, it gets better.

  5. As a mom of someone with celiac disease, I feel so bad for the teenager who is not getting support from her family. My son was diagnosed at age 12. he was already sick and anxious and basically terrified of food… and I felt it was my job to do everything I could to take on the stress of constant vigilance for him. Making our home GF, cooking meals he enjoyed, finding restaurants, asking everyone all the questions all the time. Now at age 17 he is starting to take on some of that himself… speaking up, cooking, figuring out new foods. But I always remember what one doctor told me: There is something called “disease burden” that is actually measurable. Its the amount of time and energy it takes to manage your disease. For example, hypertension, though serious has super low disease burden because you just take one pill and forget it. But Celiac disease, other than maybe Type 1 Diabetes has the highest Disease Burden of any illness out there. Its constant, every day. And disease burden can impact your mental health. As a mother, it is my job to take on some of that for my son until he is an adult and can take it on for himself. I notice Gluten dude has a wife who cooks for him. Anything any of us “allies” can do to reduce the disease burden for others makes a huge difference.

    1. I’m also a mom of a Celiac son who was diagnosed at 12, is about to turn 18 and will be going off to college across the country next year. Unfortunately, he continues to have symptoms, which I think are mostly due to stress (could there be a worse year to be a high school senior?). Reading about adults who have so many challenges with Celiac years after diagnosis absolutely tears me up. I’m terrified about having my son dependent on others for food while he’s at college. I definitely feel the “disease burden” but would still give anything if I could take the entire thing on myself and have my kid never to have to worry about gluten again.

  6. I read an analogy that went something like this. Sometimes life drops a boulder on you, like cancer. Sometimes life pelts you with some big rocks, or puts them in your path. And sometimes, you are being pelted with gravel. Managing my celiacs is mostly like being pelted with gravel. Most days, I can handle it. Other days, it feels like the gravel hit me right between the eyes, and it stings and smarts, maybe opens a wound. It really does help to come here, and read that we are not alone, and that it is ok to acknowledge that some days stink.

  7. Fantastic post. True to all of the above.
    I was dx’d in 1998 (with upper endoscopy – way official.) At the time I was a junior in college, living in a sorority at a large university. All that to say … eating gluten-free was a challenge then but, I find it more difficult now – due to those replacement foods.
    It took me nearly five months of living on a strict, strict, strict GF diet to really, really start feeling good. But man alive, when I felt good, it was great! My allergies cleared up and so did the asthma.
    At that time, I did not have a bunch of replacement foods to substitute for my favorite cookies, etc. So, the issue of cross contamination was much less.
    For folks who are frustrated – I totally get it – 100%. I agree that eating whole foods that you can prepare yourself/clean yourself and doing so in a strictly GF kitchen is the way to go.
    Even a speck of gluten can make me sick so, truly limiting the exposure to any/all gluten around you may help the positive results come quicker.
    And – eating GF can be great. Lots of fresh fruits and veggies … well, fruits have saved my sweet tooth.

  8. I feel for the teenager. I was an adult when I was diagnosed but it was still hard. I was diagnosed close to Christmas so wanted to host Christmas dinner so I knew it would be safe but my sister insisted I had to come to her house but 1 day before Christmas she told me to cook “my own damn turkey” and would I also bring my own beverages, appetizers, vegetables and dessert. I mean GF vegetables are pretty damn easy. When I said it would be easier to just stay home I was told “ to not be so difficult, that it wasn’t all about me.”

    All family activities were in unsafe restaurants or I be invited for dinner last minute to family homes but told to bring my own food” as there is nothing here for you to eat.” And my favourite, you talk too much about Celiac disease and trying to find safe food away from home.

    You learn who is in your court. My family was not supportive but friends were. In fact any GF food I brought would be cross contaminated by my family even when labeled and in a separate part of the house. Certified GF items I left in freezers at family homes would be consumed because “ they got hungry” and ate it. It can be a socially isolating disease until you learn to manage it. Celiac disease isn’t for sissies. I am however tired of being told by family it just Celiac disease, it’s not like it’s anything serious.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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