My father is 77 and has lived alone for at least 30 years. He eats what he wants, drinks what he wants and basically lives life how he wants - even though it’s not in his best interest. 4 years ago he went into the hospital because out of the blue, he noticed a very unstable gait. He had emergency surgery (cervical stenosis). Since then, even with PT, his walking has been a slow process but in the past 2 months it’s gotten much much worse. 10 days ago i took him to the ER because I thought maybe he had an infection. He could barely walk at all (falling frequently). After 5 days in the hospital, a collection of personal information and many tests all coming up fine, the doctors felt that my fathers daily beer drinking through years of abuse has caused degenerative damage to his nerves and some dementia. He’s been in a rehab getting PT and OT for 5 days and it seems his symptoms are getting worse rather than better.
He hasn’t had alcohol for 10 days now, so I assumed there would be some withdrawal but it seems his symptoms are different now (in fact now there are new symptoms!) His speech is slurred and he’s very confused (more than usual). Through my own research I’ve come across something called gluten ataxia. This particular condition wouldn’t normally have raised a red flag for me (even though the symptoms are the same as what he’s been experiencing) BUT the irony is that I have 3 children - all who have been diagnosed with celiac (an autoimmune condition when the body cannot digest wheat). Gluten ataxia is a form of celiac disease and celiac disease is hereditary. My father has never been tested. I asked the hospital to test him for celiac (it’s only a blood test) but they said they could t do it. I also asked the rehab to test my dad for celiac but they’re not sure if they can because he has already been diagnosed with an alcohol abusive condition. (Drinking beer for anyone is bad I know, but for someone who has celiac or gluten ataxia, beer as well as any food with gluten is horrible! Beer, mind you is also loaded with gluten!) Has anyone ever heard of gluten ataxia and if so, what were the symptoms and how were they finally diagnosed? I know the alcohol is an issue (and dad says he’s going to stop) but to this day - even in the rehab - he’s still being fed gluten (which I’m wondering and suspecting could be a huge part of his condition.) Pls provide any info if you have any!!! ❤️
Is your father in rehab for alcohol withdrawal or rehab for a neuromuscular disorder like a stroke, fall, etc (the rehab most people go to after acute events such as the above)?
Anything is possible, however. It sounds like your theory should at least be checked with a blood test.
Trouble is, the rehab center probably won’t do this bloodwork and will probably refer him out to a GI specialist or ask him to choose and see a PCP.
Rehab won’t do labs that are unrelated to their treatment which wouldn’t be different than what he is receiving there now other than a gluten free diet, but no one has worked him up for this yet. And after all those years of beer drinking full of gluten his providers may not see the need and will again suggest he find a PCP to get a work up when he is discharged. If he goes to a SNF after not being able to complete rehab, the SNF will refer him out to a GI doctor.
Its best you pursue providers well versed in that specialty and if possible get an appt with a PCP or GI and take him to the appt yourself or arrange for transport by rehab (which may not be an option). This is not considered an acute symptom for rehab to be responsible to test for- other than putting him on a no gluten diet while there, what would they do differently? Probably nothing.
Rehab may be reluctant to have the labs done if they don’t have a provider who will write an order for the lab as they may not get reimbursed for such an expensive lab because they are not diagnosticians. The pt comes to a rehab facility with a diagnosis from providers determined in the hospital with orders for PT,OT,Speech therapy & SN. The lab needs to be ordered by a MD, CRNP or PA. after an exam for that condition. Not likely this will be pursued by the rehab doctors as this isn’t their specialty and God Knows how difficult it is these days for one doctor to handle all conditions. Those days are over. Your father, from what it sounds, doesn’t have a PCP & it’s to his advantage now to find one & establish a relationship with as his health issues will most likely not improve.
When rehab is complete and if he is discharged back home or to a SNF, then pursue the workup.
I do know that chronic alcoholism leads to the symptoms he is having - ataxia (poor gait), symptoms of dementia, short and long term memory problems. That’s what rehab is treating now.
Most people don’t eat a whole lot in rehab unless the diet is augmented by the family. Usually the food is less than desirable and you don’t get a lot of it either. Is he eating?
The proper path would be to establish a relationship with a PCP who will examine his recent labs and symptoms and refer him to GI after the PCP orders the test and it comes out positive.
Your father is lucky to have someone like you looking out for him.
Just a thought.
Best of luck!!
You say 3 of your kids have been Dx with Celiac disease. Your father has been drinking beer for years.
You think your father had Gluten Ataxia.
Gluten ataxia is an autoimmune disorder in which the antibodies that are release when digestine gluten that attacks the brain by mistake. Therefore the immune system attacks the brain. (Sensitivity to wheat, but reaction is different)
Celiac disease is where the immune system attacks parts of the body where gluten is such as stomach and intestine. (Sensitivity to wheat)
Research shows there may be accordance between the two diseases. But not all Drs realize or know this!
Celiac disease symptoms include: gastrointestinal problems such as: excessive gas, diarrhea, heartburn, nausea, vomiting, boneloss, malnutrition, fatigue, (iron &/or vit B12, &/or falic acid deficiency) there are more symptoms but we have a enough to start with.
Now Gluten ataxia may show some of the same symptoms however, the main symptoms are Neurological problems such as, may cause speech problems, loss of balance, and motor control problems. These symptoms show up in chronic conditions! Both of these diseases can show up anytime in a person's life.
Your father needs a blood test Transglutaminase Antibodies (tTG-lgA) which can not be proformed at a rehab center. He will also need other blood work and a Biopsy done with a endoscope to take a sample of his small intestine. These test cost thousands of dollars if insurance doesn't cover them.
So here is my opinion for what it is worth...I think you have a good case. I am going on with what you are telling me and this is my opinion only. Seem how your father drank beer could have cause Gluten Ataia and your kids was Dx with Celiac Disease. However, your father should be tested for a stroke just to be safe!
If possible can you restrict his gluten intake and see if he gets better and/or call his Dr. But when he gets tested he will need lots of gluten in his body. To show up on test!
If you want your father tested you will have to fight for it! Be relentless!
Yes, Drs can be wrong. People don't realize when a Dr goes to Dx someone they can only narrow down the disease by the symptoms and many diseases have the same symptoms (in the beginng), than it comes down to testing and eliminating each disease one by one!
I hope this helped!
Good Luck!
Doctors can always be wrong, they call it practicing medicine. Beer may be part of his problem, but does sound like there may be something else going on. If it were celiac disease it seems problems would have shown up way before now. I imagine it could be possible that he is going through some sort of withdrawal. Has his liver function been checked with all those other hospital tests I would imagine it has.