My Mom & Gluten


urlSometimes you really don’t want to write things down. Like, you can live with it in your head. You can deal with the theoretical, but when it happens IRL, and then you go around having to say it out loud to people, wow, does it suck. Believe it or not, I’m not talking about my own celiac disease, and how it knocked me on my ass, because I get knocked down and I get up again since I’m living the way Chumbawamba taught me.

Nope, this is about someone else. My mom. My mom who has been suffering from dementia, weird vision problems, weight loss, and a severe loss of coordination. A woman who lived independently on over 40 (maybe 60? I suck at remembering numbers, and/or guessing the measurements of things) acres of farm land, took up photography after retiring from her incredibly satisfying career as an English teacher, and traveled alone by car across the American West after my stepfather passed away unexpectedly. A woman who suddenly couldn’t do jack shit. This was seven years ago.

As you might imagine, the past seven years have been frustrating (“There’s nothing wrong with me, everyone my age forgets where they’re going when they drive.”), and eventually tragic as she had to be moved from her home, first in with my older brother, and eventually into an assisted living facility. All along we were asking, “Did she have a stroke? Is it early onset Alzheimer’s?” We were repeatedly told no, until eventually we were told that it must be a very rare form of Alzheimer’s and she now has brain damage in a very specific part of her brain. And then I came across this article about gluten ataxia in Living Without magazine. 

After digging in because, holy shit, this sure does sound like my mom, and being directed to another article about gluten ataxia by the incredibly helpful EIC, Alicia Woodward, I knew this was what my mom’s mystery health issues were all about. And I also realized the fact that even a gluten-free diet may not be helpful after all of the damage that has been done to her brain.

Seven years after the symptoms started to appear, I stumbled upon something that made them all connect and make sense, as every single symptom described—even the way they came on—mirrored my mother’s experience. Every. Single. One. Naturally I called her GP to get the appropriate blood tests stat. And even though I’ve had tests up the wazoo, I still don’t totally understand the science when the doctor said to me, “Oh, your mother is a very strong positive.” Other than, yeah, gluten is a serious problem. My mom’s doctor immediately prescribed a gluten-free diet. I called the neurologist who has been seeing her, more tests will be run, more research will be had, and in the meantime my mom is on a gluten-free diet. In an assisted living facility. And she has dementia. Which means . . . it’s not going to be perfect. Far from it. In fact, my last conversation with my mother left me even more discouraged about the possibility that she would be able to maintain this, much less be willing to give it a try. It’s going to be a struggle.

I sent some gluten-free treats, but my mom (who, as I mentioned before, has significant brain damage – thanks gluten!) is not able to fully “get” it. She loves the cookies and crackers I’m sending, but I was just visiting her while I was in town during breakfast time when she was enjoying a nice bowl of warm oatmeal. I’ve never been so disappointed in oatmeal in my life.

This will be a laborious journey. One that may not make one damn bit of difference, but right now I’m pretty pissed off that a girl who likes to use foul language on the Internet was the person to figure this out about my mom, and not say, someone who went to medical school.

And by the way, to that doctor at St. David’s in Austin that I told in November of 2011 that I had celiac and it was a hereditary condition, and causes neurological problems, and you laughed and told me that wasn’t true: Fuck you. No really, fuck you.

To all of the doctors who kind of shrugged, I don’t want to say an outright fuck you, but it should matter that my mom’s family has an intense history of autoimmune diseases. You checked on that, right? Her mother had lupus, her sister has a variety of autoimmune diseases that would rival freaking Baskin-Robbins. Maybe when a patient comes in and complains of neurological problems and you can’t identify the issue you look at her medical history.

I know that gluten ataxia is rare. I know that it took me—someone who writes down every thought she has on the topic of gluten—two years to discover the condition. But that doesn’t stop me from wanting to go on an ass-kicking tour of Oklahoma and Texas.

My mom was an incredibly intelligent woman, an avid reader, who always supported the “weird” kid in school, as well as at home. Now, she’s confused, angry, and half the person she used to be. If that. And the brain damage is probably-definitely gluten ataxia. And even if I send her gluten-free cake every single day, and she somehow manages to remember that she can’t have gravy on her mashed potatoes, it might not matter one little bit. But we’re trying. FUCK.

Image via Craftster

35 Comments

Filed under Celiac Disease, Uncategorized

35 responses to “My Mom & Gluten

  1. Ugh, this sucks. It’s so sad to hear stories like this because who knows what would have happened, and how differently things would have been, had it been discovered sooner. Even though it won’t be perfect in the home, and with her dementia, hopefully it helps.

  2. April, I’m so sorry for what you and your mom are going through. But I’m so grateful for your voice and the clarity and strength with which you are advocating for all things gluten free. Thanks for that and for this blog in particular.

  3. Fuck is right! My mother also has autoimmune issues but has been very slow to get tested for celiac. I’m so sorry for your mom…and you. Thanks for sharing your story.

  4. I’m so sorry to hear about this. It is absolutely SHAMEFUL how terrible our medical system is at diagnosing gluten disorders. This forum – http://glutenfreeandbeyond.org/forum/ – has a section on neurologic manifestations, but hurry through that as they are about to close that forum down. Same people keep up a “file” of abstracts related to all things gluten-disordered and they have the biggest collection re: neurologic that I’ve seen. They are keeping it up on FB too as “The Gluten File” group. I will be happy to join you on that ass-kicking tour!

  5. I am so sorry to hear this. With my “99% Diagnosis”, my family is now starting to see individual symptoms as a whole and yeah – they’re all starting to suspect gluten issues across the board. I was an avid reader until about 5 years ago, when I started to be unable to concentrate on books, reading and rereading passages three or more times. Everything clicked last fall, the more I read about CD, my problems reading and concentrating, my unexplained skin rashes, the gas/bloating and every other GI issue.

    I hope the assisted living facility does right by your mother. I know you’ll do the best you can.

  6. Heather

    I hope for her that it does matter. This was me. For 6 years I had a host of neuro symptoms that eventually left me unable to drive or leave the house alone or finish my own sentences and I developed a stutter. It took a very long time, but I slowly got better. I don’t think my memory will ever be what it once was, but I can have conversations that make sense, I no longer stutter, I can work and manage my life on my own once again. I had to write myself notes about what I was doing for a long time. Exposure to barley or malt still brings the neuro symptoms back, but as long as I am very careful I am OK. Good luck to you and her.

  7. Meghan Vashko

    That is so heartbreaking and infuriating. :(. My thoughts and prayers are with your family.

  8. Kris

    Your words are moving. Your love for your mom is moving. Thank you for sharing, and I’m so sorry this has happened. I hope the new diet will happen and will help. xooooox

  9. Val Vierengel

    FUCK is right. My husband is celiac – and evidently has some other autoimmune issues that we’re still trying to diagnose (for 15 months now). 44, super-healthy, but can’t get the hell out of bed. My dad, died of Alzheimer’s at 65 – I totally get where you’re coming from. Thanks for your blog – I love it. Hang in there — Val

  10. Aunt Shirley

    That was 160 acres, sweetheart. Guess we better start testing in utero to catch it before our cerebellums begin to atrophy. Too late for me. Great write. S.

  11. Cory

    Ugh I’m so sorry to read this. As someone who had been beat to shit by auto-immune diseases (Pernicious Anemia, Celiac, Hashis) I know what a struggle this is. It took me 10 years to find a doctor that figured it out, someone who listened to me, cared, fought for me… probably saved my life in the end. I had cancer (which I think is linked to all of this AI crap) and if my doctor had not gotten me as healthy as I was, I would not have survived the 8 weeks of radiation. Its a shame we have to fight as hard as we do to get treated and listened to. I also say FUCK. And FUCK you to all of those doctors in my past who said I was fat, lazy and crazy. FUCK YOU.
    Rant over,.
    I hope you can make some headway with your mom, keep fighting for her.

  12. marie marot

    I had neurological problems and before I was diagnosed with celiac disease the neurologist I was seeing basically said “you’re crazy – take some pills for anxiety and all these problems in your head will go away” so frustrating – hope your mom sees some reversal with the change in diet. Best of luck.

  13. Thanks! This blog should help people, if they’ll just take the time to read what you have to teach them!!! I’m FB sharing.

  14. K

    Never give up. Ever.

    • I just want to take a minute to thank everyone for the incredible responses. One, I had no idea this was a big thing and can’t believe the stories I’m hearing. And two, I did not expect this angry vent to hit as hard as it has. Thank you. It’s incredible knowing the support is out there.

  15. April, I’m so, so sorry to hear about this. Before I was diagnosed, I had neurological symptoms along with the rest of the regular ones; loss of coordination (when picking things up, my hands always seemed to be just a bit to the side of where my brain thought they were) and I developed an unpredictable stutter. I couldn’t imagine that these symptoms were related to the migraines and stomach problems, but then I read those same articles on gluten ataxia that you did and everything made so much sense. The neuro symptoms went away within 6 months of giving up gluten. I know things have progressed much more with your mom, but I hope that she finds even a little bit of improvement–this story is so infuriating and sad.

    • Yep, my mom would reach for something on the table, and go all around it and not be able to find it. So weird. I’m so glad to hear you’ve improved, and it does give me hope. Thank you.

  16. tara

    i feel for you. my grandpa has alz and its been hell. who knows what its from. its hard not knowing why it happened or when. its such a horrible horrible disease and the med community just sort of looked at us like we were nuts in the beginning when we were looking for “help” or a “cure” or a freaking reason why this happened. there is so much still unknown and i feel like they just think “he’s old what do you expect”. No one can prepare you for the alz journey. no one. i can’t imagine how you are feeling thinking that its possible it could have been prevented for your mother with something as simple as a gf diet (i know its not simple to be gf but relatively speaking compared to what you are going through now). Reading all the stories above makes me thankful that i only have digestive celiac related issues at least for now and no other auto-immune disease that i know of. who would have thought i would be saying…wow thankfully i ONLY have celiac ???????

    I want to say 2 things to you.
    1. FUCK all those doctors. i’m with you on that. and I’m shouting it for you from my desk at work right now ; )
    2. I’m praying for you and your family

    I realize those 2 things don’t really go together but its how i deal with things. i will think positive happy thoughts for you because right now you just need to be angry. and i get it. be angry. but then think positive if you can. i hope your mother see’s improvement. even if just for a bit. when you get those good times with her now where she is happy and lucid and smiling and calling you by your name….enjoy them. let time stop for a minute and bathe in the good times. and there is one thing i can tell you if she doesn’t get better and slips deeper into more alz-like situation….look into her eyes. the only thing not different about my grandpa right now are his eyes. he is still there in the eyes. he has bright blue alive eyes and when i visit him i look into them and its like i can still see him as he used to be and he can see me and tell me he loves me.

  17. emisformaker

    You might want to look into vitamin therapy treatments – such as B vitamin injections – to help speed the healing process for your mother. It’s likely that her gut is so severely damaged from years of undiagnosed reactions to gluten that she may be unable to absorb these vitamins from her food. B vitamins are essential for brain and nerve health. Also, omega-3 oils that are high in DHA – such as squid – are very good for enhancing brain function. Probiotics might also help a lot.
    There’s my two (or three) cents. Good luck, and fuck doctors!

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  19. Stephanie

    So terribibly sorry and can relate also. My daughter is hypothyroid & diabetic. Took the dr seven years to diagnose her, all the while me screaming “”there is something wrong””!! Of course i was the crazy bitch mom they hated to see comeing……and she was just trying to get attention. Celiac the whole time, that was tearing down her immune system and making her oh so sick! Can’t help but wonder had they known what the hell they were talking about would she be dealing with all the health issues she has now. So yes I will join in with you in saying FUCK CELIAC and FUCK DOCTORS!!

  20. kara

    oh, noo!!! i’m so very sorry to hear that your mom has celiac as well! i often wonder how she is doing and i remember when you were asking the doctors if it was celiac-related and they denied! what an effing bummer! and, damn, you have good instincts!!!!

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  23. Jean Wike

    I’m rather late commenting, having just discovered your existence yesterday at Barnes and Noble. I started reading your book in store for free, then purchased it and finished it last night. Ha ha, my favorite part in the whole book is M&Ms are okay and they’re everywhere. Anyway I noticed you said your mother is angry. That’s the second clue I had that wheat was a problem. First clue was when I went off wheat for about 3 to 4 weeks and a week or so after starting to eat it again my elbows both lost about an inch of skin. Second clue, as I said, was noticing a week or two into again going mostly gluten free my temperament was vastly improving. I no longer have the hair-trigger temper which had been getting worse and worse. Wishing your mother the best possible health.

  24. Jamie

    Ditto on the mom issue and gluten. Frustrating all the way around.

  25. Annie

    I realize this is a really late reply, but I just came across your article. If your mother is still in assisted living, they should be keeping track of what she eats. The dr. prescribed gluten-free diet should be in her charts, and the kitchen manager and staff should be serving her the correct food. That’s their job, and if they don’t do it they need to be raked up one side and down the other. They are required to keep track of other allergies (shellfish, nuts, food dye) and plan accordingly, and gluten is no different.

    Sorry for the rant, my sister was the kitchen manager at an assisted living facility, and she had to keep track of all the allergies and make sure no one ate something that could poison them. It’s terrible that your mother would have to suffer more because someone doesn’t bother to do their job.

    • I’ve been digesting your comment, Annie. I am readdressing the issue at my mom’s facility. It never occurred to me that she wasn’t “the only one” with an issue. I know that sounds crazy, but it just didn’t and it felt like we were asking for a huge accommodation and no one else was, and they weren’t used to it, and didn’t do it . . . Hearing that your sister was in this position and dealt with food allergies has made me a little insane. Thank you for this information.

  26. Melissa

    I empathize. I find myself wondering if I met the same doctor at St. David’s hospital in Austin. Perhaps it was the gentleman with the medical degree (emergency room doctor) who offered me a packaged sandwich – after I told him I could not and did not eat foods containing gluten . . . to which he replied, “You could just take the bread off of it.” Self to doctor, “You are telling me I can eat cross-contaminated food!” . . . or, perhaps it was one of the same jackasses who misdiagnosed my daughter – so severely that it could have literally been the death of her. I refer to two major Austin hospitals, two Austin gastroenterology specialists, and one Austin Internal Medicine doctor. After six months of her being severely ill and in and out of Austin hospitals, we took her to Houston. After about fifteen (initial) minutes with a Houston über doc, she was on her way to a proper diagnosis and the right tests which confirmed the need for surgery. Sweet relief. I dearly love Austin, Texas, but to say I have a loss of confidence in the Austin medical community is an understatement. I do not mean to impugn the integrity of the entire Austin medical community. I am just speaking from personal experiences. Thank you for sharing your mother’s story. I hope you are feeling more empowered as your mother’s advocate. You both deserve more respect. Thank you for giving us another voice in Austin, Texas (and the world) for gluten-free healthful living!

    • I’m really sorry Melissa. It was St. David’s. Maybe that whole hospital needs a crash course in celiac/gluten. UGH. And I’m glad your daughter daughter FINALLY found a doctor who was competent. I honestly don’t know how all doctors are not clued in about this condition. Best of luck.

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