Gluten is an asshole.
Those of us who wind up in the pot after a lunch meeting know this, and those of us who came back from the brink of death after going gluten-free know this as well. And after returning from helping to move my mother into a more secure memory care unit in her assisted living facility, I think those who are unlucky enough to suffer from gluten ataxia, really, really, really, know it.
When I first learned about gluten ataxia and connected it to the strange and devastating decline of my mother, I had hope. I did. I now realize that it was too late for that and unlike me, my mom wasn’t going to have a magical recovery simply by following the gluten-free diet.
So we just had to move my mom into the part of the facility that offers 24/7 care, because she needs that now. The last visit with the neurologist, who had given us a diagnosis of post cortical atrophy, confirmed what the nurses and administrators at her facility were already telling us–she won’t be getting better, and she can’t be without assistance at any time.
Even with that news, I can say that I was heartened when I sat down next to her during dinner on the “new” side and the staff brought her gluten-free meal. Not that it seems to matter at this point. Probably. See? I’m still kind of like, “Well, maybe it will help!” Help what? I don’t even know.
What I’ve gleaned from conversations, articles and trying to connect some dots with my family medical history and my mom’s symptoms, is that a hell of a lot more research needs to be done in this area. I realize I only went to a state school, but whether gluten ataxia causes post cortical atrophy or if maybe my mom has a gluten sensitivity AND post cortical atrophy, which just happens to have the same effect as gluten ataxia, is unclear at this juncture. But here’s what her symptoms were in the beginning: “jumping” text on a page and objects which creates the inability to read, judge distance, write and walk and sit down in a chair without assistance. Deteriorating coordination, loss of words, decreased memory (dementia) and of course, a hell of a lot of anxiety. These are symptoms of both conditions—gluten ataxia and post cortical atrophy. So.
My mom is a private person and even though she isn’t herself—hasn’t been herself in 5 years—I still feel the need to protect the intimate details of this part of her life. What I do feel comfortable saying is this—whatever the definition, this condition sucks. That anxiety I mentioned before? It comes on the minute you realize something crazy is happening in your brain, and it never goes away. Unlike some forms of Alzheimer’s disease, there is no phase where the memory is so far gone that the person suffering does not realize she is suffering. In my mother’s case we’re talking about 5 years of knowing that she’s losing her ability to do the things she enjoys, as well as losing body function, memory, independence and any sort of life that that she once knew. (And about 4 years prior of denial that anything was wrong, even though the rest of us could see it, if not identify what the hell was happening.)
Even now that my mom is in what we can assume are the advanced stages of this (although honestly, not enough research has been done to know what is happening, and when it will be over), she’s still pretty damn mad about her situation. I would be too. Or rather, I am mad about her situation and the lack of knowledge which led to her brain being damaged beyond repair. I have days where I just want scream, “HELP!!!” over and over and post it on Facebook, and tweet it and Instagram it. HELP. But the fact is, there isn’t anything anyone can do. Nothing. Not one damn thing.
It’s easier to be angry than to be sad, so that’s where I’m hanging out right now. Stay tuned. Or don’t, really. It’s a horrible channel and I wouldn’t blame anyone for turning it off.
I’m so sorry for the suffering that your mom is enduring.
I met you when I purchased your book when it first came out at a CDF conference a couple years ago; I wanted to ask then how your mom was but I thought, no, weird, she doesn’t even know me.
Your book brought much needed light to a new for me diagnosis that I was struggling with, thank you.
I am a Physical Therapist and I work in assistive living, board and care and home settings. I see the suffering. It hurts my heart when I know I can’t help improve these patient’s lives, knowing also that they aren’t going to get better.
You bet, now that I have CD it seems like everyone I see with symptoms such as your mom makes me want to just yell out, “Why the hell don’t these people have a CD diagnosis?” So, so many out there undiagnosed with a doomed fate. Makes me angry! I’m angry that it took so long for my diagnosis, and I worry that some of my symptoms may never resolve.
Thank you for your advocacy and the humor you bring to the table, it’s that humor that I know will allow you to continue to persevere and cope.
First time EVER blog commentor, long time reader. Felt so compelled.
Thank you so much. This is a really lovely comment to read.
I’m really sorry to hear this. It is very hard to see your mom decline. Hang in there and do what you are doing. I’m with you in spirit, as I can’t be there to give you a gluten-free donut, which is really what I would do if I lived closer. -Amy
im sorry to hear this. my grandpa had alzheimer but not classic case, etc and sometimes i wonder if he had celiac. he was in a nursing home for years and years even though they predicted he would live only 1 year max. he was very very angry and knew what was happening pretty much until the last 6 months. Im sad to say he even struck some other patients during this time. he was such a sweet man this was so out of character but he developed severe anger issues. i ahve ot admit for a period of time i was afraid of him which was so sad.
be angry. be sad. be whatever you need to be. for me….im able now to start letting earlier images of my grandpa enter my mind and remember him that way vs. in teh nursing home but it took some time. now…i just worry it will happen to my mom or to me. im so sorry for you : (
Thank you, Tara. Yes, it sounds like your grandfather has something very similar to my mother. She also has acted violently which is the last thing you would ever expect from the most mild-mannered woman you’d ever meet.
Thank you for our kind words, and I’m very happy you’re able to begin remember your grandpa as how he was before. That’s the most upsetting thing right now, trying to hold on to who she was.
April, I just learned of your site today, and I feel your pain, and your mother’s too. I have celiac and gluten ataxia, and a lot of other autoimmunity. I am another poster child for gluten ignorance among physicians, as it was 36 years since I couldn’t hold food down and had the upper abdominal pain and fatigue at the age of 19 in college, and went to a gastroenterologist at my university, which had a medical school, and was diagnosed with a “nervous stomach” when i swallowed a barium shake and he witnessed pyloric spasms.
I am curious if you heard Dr. Marios Hadjivassiliou on Dr. Tom O’Bryan’s Gluten Summit. Dr. Hadjivassiliou said those with gluten ataxia have to be particularly careful to avoid gluten. He also said the vast majority of celiacs have ataxia symptoms, and there are other HLA-DQB genes beside celiac genes that are gluten ataxia genes. I’ll tell you what that means for me. I have one ceiac and ataxia gene, and another ataxia gene from the other parent. some researchers say that both of those genes are also MS genes. I have had every MS symptom I have read about. If the wind is for the direction of a cluster of 4 fast food restaurants within a block of where I live, if I am smelling fried chicken, pancakes or donuts, I need to hold my breath and get indoors. More than 2 lungfuls and I will start dropping and breaking things the next day, and the ataxia will continue. First it would last 2 1/2 months, then 3, now 4. And I totally get the anger issues. I live alone, like a hermit. I was diagnosed with celiac when living with a roommate who was quite clean and absent for months at a time, but ultimately, I was forced to move out. Any toasting if bread, boiling of pasta in the townhouse or even baking of cookies in the neighboring unit would gluten me. My doctor told me it got all over the Internet that you could not recover from the death of your cerebellar Purkinje (sorry, I lost my spelling ability from gluten brain damage) cells, but that is not true. I have recovered several times.
I really cannot believe that there is a nursing facility that is gluten-free enough for a celiac, let alone an ataxia patient. What do you think now?
So this sounds like a huge nightmare for you, but also that you’ve had success in coming back. Is the cerebellar Purkinje (?) the same thing as actual brain matter? Because that’s what is deteriorated in my mother, and word on the street is that won’t regenerate.
I’m having a similar problem. I’m getting symptoms from a neighbor’s cooking. The muscle pain is severe and sometimes my gait is affected. I have faced this cooking/frying/baking problem before. There are streets I avoid because I don’t want to walk by a pizza place or donut shop that has doors wide open or an exhaust hood running. Were you able to find a place to live where this isn’t a problem? A house that’s not attached to another, perhaps? I have to endure this for several more months until the lease is up. Any advice would be greatly appreciated.
Well this isn’t something that usually happens, so I’m wondering if you should talk to a doctor about an MRI or the like. For celiacs and other people affected by gluten, it needs to be ingested. Just having it in the air shouldn’t have an effect. While I admit to holding my breath when I pass a bakery, it’s more psychological than a real physical reaction. Make sure you have a brain scan and every kind of blood work to make sure you can identify exactly what’s going on with you.
Thank you for your reply. When I read Michael’s post on here, his problem sounded somewhat similar to the problem I’m having (he was reacting to fast food restaurants while outside if the wind blew in his direction and to people cooking in other units of his townhouse and he had to move), so I will have to look into the ataxia gene as well when I go to the doctor.
Neurologist Dr. Marios Hadjivassiliou said that celiac disease turns neurological when you are in your fifties. However, it can do so earlier. Dr. Tom O’Bryan reported on an eight year old boy having ataxia, and 26% of a consecutive group of patients coming to his clinic tested positive for ataxia. Dr. Hadjivassiliou and immunologist Dr. Aristo Vagdani have said that IgG antibodies to alpha gliadin can attach to the Purkinje cells (neurons in our cerebellum).
Italian celiac researchers, including Dr. Umberto Volta, recently identified IgG antineuronal antibodies to central nervous system (brain) and enteric (intestinal) nervous system neurons in a large percentage of celiacs with neurological symptoms.
In one of the functional medicine health summits, Dr. Pamela Smith MD said something to the effect that celiac disease affects men and boys worse than women and girls. She also said that systemic lupus Erythmatosis can attack any organ or tissue in your body. I have surmised that I probably have HLA-DR15 and do have HLA-DR3 (if my damaged memory serves me) with my HLA-DQ2.5 with my celiac gene, two different SLE genes. I have found that men can experience a lot more extra intestinal serious symptoms, but have heard from women who match the men in symptoms. It has also been mentioned by doctors that women are designed (have extra hormones that vary through pregnancy and affect their immune system) to carry children, half of whose DNA is different from their own.
Thank you for your reply Michael. Much appreciated. It looks like I will have to get gene tested. Have you found any relief as far as having reactions to cooking odors/particles? I don’t know if particles is the correct term, but I’ve had reactions when there’s been cooking going on earlier in the day, but no longer any detectable odor, so I’m assuming “particles” are still in the air. Eating is not a problem anymore because I’m very careful reading labels and mostly do my own cooking, but this airborne problem is obviously out of my control and I’m very concerned about finding a place to live where this won’t be an issue. What did you end up doing? Renting a house that is not attached to another? Thanks again.
JC, yes I rented a small cottage with a big yard, although I was pressed for time and money, and I knew it was the best deal I have seen in the area in ten years. I still have to deal with the glutens vapors from a cluster of four fast food restaurants, checking the current and future wind direction on weather apps.
That’s what I figured. Will have to look for a small detached house before the lease is up. I cannot live in an apartment building any longer. I have my work cut out for me since I’m living in NYC, work as a dog walker and don’t drive. Thanks for your help and please feel free to e-mail me. I’ve met other celiacs, but nobody with our particular problem. email@example.com
My most sincere sympathy! Around 5 to 6 years ago my journey started. I was only 42 years old at the time and having a lots of problems with balance, coordination and with my speech. Going from a doctor to doctor, adding medications as well to more symptoms. When a friend recommended her doctor. As soon the doctor recommended GF diet, I did start my journey. At this time I only know that I do have severe allergy. I have never got test for CD, however I don’t care to have the Dx. I know that because of the diet, I do have my life back! I won’t tell you that my coordination is perfect because it’s not, that my sense of smell is back or that my word finding problem are thing of the past. I will tell you that I have not fall in over 2 years and now I can stand on one leg for over 30 sec. Reading about your mother make me think about one thing, that just changing my diet on time give my children and husband, his wife and their mother back. God bless you!