Untreated Celiac And Mini-strokes

[elye]

Well, I could use some insight from all you online buddies of mine. I had the worst day yesterday--was showering at the gym, bent down to soap my feet, and when I straightened up, WHAM! Out of the blue, I have severe double vision. I stumbled out of the shower, managed to get dressed, and found two of my friends and told them I needed to get to the emergency, as I thought I could be having a stroke. They rushed me there and helped me into the hospital. Long story longer, I spent the day there in observation, waiting for a CT scan. My double vision cleared up after about ninety minutes, but they kept a close eye on me for a few hours. The ER doc is pretty certain I had a transient ischemic stroke, and I believe one of the big reasons for her diagnosis was because I have been a type one diabetic for thirty-three years. Not just ANY type oner, however--a very tightly controlled one. My blood pressure and cholesterol have always been stellar, too. So, double vision and long-term diabetes equals a mini-stroke. Now, I brought up a number of times the fact that I am celiac, and half the nurses did not know anything about it. Sadly, not a big surprise, but the really disturbing thing is that the doctor knew very little about it and therefore it wasn't even addressed. Now, since the fear and shock from yesterday has calmed down somewhat, I've been questioning the connection between this mini-stroke and my diabetes. For a large part of my life my A1C results have been "non-diabetic". So now I'm wondering about the forty years of constant damage from undiagnosed celiac, and if it could be more the culprit than healthy diabetes would be. I've searched for info on celiac/stroke connection, but haven't found much. I am to see my new neurologist next week and I'll have an MRI (the CT scan showed nothing), so before I go I want info, and I strongly suspect that there must be some, on strokes and celiac damage. Anybody have any insights/advice/experiences? Wow, what a yucky weekend. I'm not a happy camper!

[rinne]

Emily, I am so sorry, I imagine it must of been very scary. I'm so glad friends were with you. I don't know a thing about Celiac and strokes but I wanted to let you know that you are in my prayers.

How are you feeling now?

[elye]

Hi, Rinne,

Thanks so much. Actually, I am feeling physically very well now, it's just the shaken up part that's still with me. Funny, I've always taken such pride in my great health and my history of having no complications from diabetes, and rereading my last post I can see how I really don't want to imagine that my great track record has ended, finally. It's a tough thing to come to terms with, if taking excellent care of oneself can eventually make no difference...complications will come. As life goes on we learn more and more about ourselves, don't we? I think the possibility of finally having a "diabetes complication" is causing me more stress than the thought of having the actual stroke. That's why, obviously, I've posted about a possible celiac connection. Aren't I silly...

[mamaw]

I don't know either if there is a connection but I had mini strokes in my thirties . I didn't get double vision but I didn't know who or where I was and I couldn't speak but I knew everything that was happening around me---- I just couldn't move or speak, and was confused. Sometimes they lasted for seconds and then some longer.My doc treats me with metformin but I don't have diabetes. He also has his twelve year old daughters on metformin too. He claims I will never be diabetic , he says metformin helps so you don't have cravings for carbs.... I can't tell anything taking or not taking it. This doc(endronogolist) said most of his patients he prescribes this for is not diabetic. But my mini-strokes stopped after I started eating in a more natural fashion . It scared me enough to start alternative medicines. But I have had some really odd things happen to me in my years.

I know the very best thing I ever did was stop eating wheat & gluten.Many of my ailments left once I went gluten-free.

mamaw

[psawyer]

It's a tough thing to come to terms with, if taking excellent care of oneself can eventually make no difference...complications will come.

No difference? Really, this is not a black-and-white situation. Given all the possible complications of diabetes, and the varying severity of them, good control always helps. Even if "zero complications" is not achieved, you can greatly reduce the number and severity of complications through good control. Keep doing what you are doing! You would not have been complication-free for thirty-three years otherwise. This may not even be diabetes related. Keep the faith, and keep the A1C down (mine is consistently between 6.5 and 6.8). I'm pulling for you.

[elye]

Thanks, Peter. I needed that.

[rinne]

Yes, I think being complication free for so long is impressive, obviously you have taken very good care of yourself. I hope this is just a glitch and that you will continue to be well for a very long time.

[eKatherine]

Although the American medical establishment is obsessed with the idea that a low cholesteol level is good and a really, really low cholesterol is lots lots better, Japanese researchers have found that a low cholesterol level can predispose a person for certain types of strokes.

[happiestgirl]

It's a tough thing to come to terms with, if taking excellent care of oneself can eventually make no difference...complications will come.

***I hate to play "Devil's Advocate" here, because I really do believe that you should take as good of care of yourself as you possibly, humanly can. But life has taught me (through lots of stabs in the heart and shreddings of the soul), that whatever you do in your life can only affect the 'quality' of it, not the 'quantity' of it. I realise that not everyone has faith or religion or whatever, and I do not mean to offend those individuals (whomever you may be) in particular. I just think that when it's your time to go, you're going, like it or not. So we just have to do the best we can to have a good life while we're here, and that includes doctors and medicine and friends and family, and hopefully lots of joy and laughter along the way. And many of the posters on these boards have indeed brought me joy and laughter, and I am forever in your debt for it. I am blessed by each and everyone of you.

[Guest BERNESES]

Oh Emily- First of all a HUGE (((((((((((((((((((Hug))))))))))))))))))))))). My 36 year old hubby had a "minor" stroke at the beginning of July and we jsut saw the neuro today to go over the test results and they could find absolutely no reason for it at all. His stroke was in the cerebellum and it injured a major portion of that part of his brain but luckily, he has no real damage. You'd never even know it happened. The doctor said that even in elderly people sometimes they can find absolutely NO REASON whatsoever. So, it could have been anything. Totally random.

Of course, we wanted a reason as do you, but I don't think we're going to find one Tthe most important thing is that you are OK, you take care of your health and just do the best you can. Like happiestgirl said, you can do EVERYTHING in the world right, but some things are beyond your control. I know that's not much comfort but know that you have my support. Hugs, Beverly

[Lymetoo]

I'm very sorry to hear this as well. I think the fact that you have taken good care of yourself is/has/will pay off!!!! [sorry about the grammar there!]

I do know that inflammation causes hypercoagulation. Hypercoagulation can lead to strokes and heart disease. You may want to get tested for that. Try www.hemex.com for info.

I have inflammation, which I THINK is from years and years of Lyme disease...but since I just got dxd with celiac, that may play a large role as well.

I took heparin for several years, and now i take lumbrokinase and Rutozyme. Those are both natural supplements which can help hypercoagulation. You may want to look into that.

Good luck with this and KEEP TAKING GOOD CARE OF YOURSELF!! You've probably extended your life and especially your QUALITY OF LIFE immeasurably!!

[mle-ii]

It appears that there is a connection:

Open Original Shared Link

1: Pediatr Neurol. 2004 Aug;31(2):139-42.

Celiac disease and childhood stroke.

Goodwin FC, Beattie RM, Millar J, Kirkham FJ.

Department of Child Health, Southampton, United Kingdom.

Celiac disease is associated with a diversity of central nervous system manifestations although an association with stroke has not been documented. This case report describes a child who presented with a recurrent transient hemiplegia. Magnetic resonance imaging of the brain confirmed infarction; transcranial Doppler studies and magnetic resonance angiography were abnormal. Although there were virtually no gastrointestinal symptoms and the child was thriving, celiac disease serology was strongly positive and a duodenal biopsy confirmed the disease. Tissue transglutaminase is the major autoantigen in celiac disease and is thought to maintain vascular endothelial integrity. Antiendomysial immunoglobulin A antibodies, demonstrated to be the same autoantibody as antitransglutaminase, react with cerebral vasculature, suggesting an autoimmune mechanism for celiac disease associated vasculopathy. Because celiac disease is a potentially treatable cause of cerebral vasculopathy, serology-specifically antitissue transglutaminase antibodies-should be included in the evaluation for cryptogenic stroke in childhood, even in the absence of typical gut symptoms.

But the on the other side of the coin is this:

Open Original Shared Link

Aliment Pharmacol Ther. 2004 Jul 1;20(1):73-9

Risk of vascular disease in adults with diagnosed coeliac disease: a population-based study.

West J, Logan RF, Card TR, Smith C, Hubbard R.

Division of Epidemiology and Public Health, Medical School, Queen's Medical Centre, University of Nottingham, Nottingham, UK. joe.west@nottingham.ac.uk

BACKGROUND: It has been suggested that vascular disease mortality may be reduced in coeliac disease because of lower levels of blood pressure, cholesterol and body mass. AIM: To examine whether people with coeliac disease are at reduced risk of various vascular diseases. METHODS: We identified 3,790 adults with diagnosed coeliac disease and 17,925 age- and sex-matched controls in the General Practice Research Database. We estimated odds ratios for diagnosed hypertension, hypercholesterolaemia and atrial fibrillation and hazard ratios for myocardial infarction and stroke. RESULTS: Adults with coeliac disease, compared with controls, were less likely to have had a diagnosis of hypertension [11% vs. 15%, odds ratio 0.68 (95% confidence interval: 0.60-0.76)] or hypercholesterolaemia [3.0% vs. 4.8%, odds ration 0.58 (95% confidence interval: 0.47-0.72)] but slightly more likely to have had atrial fibrillation [2.1% vs. 1.7%, odds ratio 1.26 (95% confidence interval: 0.97-1.64)]. The hazard ratio for myocardial infarction was 0.85 (95% confidence interval: 0.63-1.13), while the hazard ratio for stroke was 1.29 (95% confidence interval: 0.98-1.70). CONCLUSIONS: Although rates of myocardial infarction and stroke were not substantially different, adults with coeliac disease do have a lower prevalence of hypertension and hypercholesterolaemia compared with the general population. The effect of a gluten-free diet on cardiovascular risk factors should be determined before any screening programmes for coeliac disease are instituted.

[Guest BERNESES]

Wow- that was interesting. It makes sense that we would have a lower risk of high blood pressure and high cholesterol if we are diagnosed and are following the diet. And Emily, if you are on a no/low sugar diet I bet that helps too.

One thing the neuro recommended (I'm sure yours did too) is an aspirin a day and Omega 3 in fish oil or flax seed oil. The neuro nurse told us that taking aan aspirin a day reduces the RISK of stroke better in men but if you take an aspirin IMMEDIATELY if you even suspect you are having another TIA it has an even stronger effect on women.

I'm so sorry that you are going through this.

[Nancym]

Brain Talk had a lot of information about neurological effects of celiac disease. Unfortunately, they're down and have been for a month. There's a doctor with a name I couldn't begin to spell or pronounce, starts with an H who is doing a lot of research in this area. I think he isn't in America however.

Best wishes to you! The brain is an amazing thing and it can heal too, so hope for the best!

[taz sharratt]

Well, I could use some insight from all you online buddies of mine. I had the worst day yesterday--was showering at the gym, bent down to soap my feet, and when I straightened up, WHAM! Out of the blue, I have severe double vision. I stumbled out of the shower, managed to get dressed, and found two of my friends and told them I needed to get to the emergency, as I thought I could be having a stroke. They rushed me there and helped me into the hospital. Long story longer, I spent the day there in observation, waiting for a CT scan. My double vision cleared up after about ninety minutes, but they kept a close eye on me for a few hours. The ER doc is pretty certain I had a transient ischemic stroke, and I believe one of the big reasons for her diagnosis was because I have been a type one diabetic for thirty-three years. Not just ANY type oner, however--a very tightly controlled one. My blood pressure and cholesterol have always been stellar, too. So, double vision and long-term diabetes equals a mini-stroke. Now, I brought up a number of times the fact that I am celiac, and half the nurses did not know anything about it. Sadly, not a big surprise, but the really disturbing thing is that the doctor knew very little about it and therefore it wasn't even addressed. Now, since the fear and shock from yesterday has calmed down somewhat, I've been questioning the connection between this mini-stroke and my diabetes. For a large part of my life my A1C results have been "non-diabetic". So now I'm wondering about the forty years of constant damage from undiagnosed celiac, and if it could be more the culprit than healthy diabetes would be. I've searched for info on celiac/stroke connection, but haven't found much. I am to see my new neurologist next week and I'll have an MRI (the CT scan showed nothing), so before I go I want info, and I strongly suspect that there must be some, on strokes and celiac damage. Anybody have any insights/advice/experiences? Wow, what a yucky weekend. I'm not a happy camper!

this is wierd cos my mum who i swear is celiac but refuses to be tested has had many mini strokes, its scarey.

[elye]

Thanks for all your responses, guys, you really are awesome. Of all people, it was my GP, NOT my endocrinologist, NOT my new neurologist, NOT my gastroentirologist, and NOT my diabetes eye specialist (yep, I've talked to ALL of them since this happened!) who brought up a possible connection to celiac disease and the TIA. It could very well be arbitrary, she said, and that it could perhaps be related to me having had untreated celiac for so long. She was quick to admit that it is beyond her scope of expert knowledge, but she does know that untreated celiac disease can have neurological effects. I'm impressed. But the GI doc and the neurologist said NOTHING about this. It's their specialty!

Now I wait for an MRI...the waiting lists are very long here in Ontario, so if it's a ridiculous wait I'm heading to New York and I'll pay for it. There goes our mortgage payment!...

[Guest BERNESES]

Thanks for all your responses, guys, you really are awesome. Of all people, it was my GP, NOT my endocrinologist, NOT my new neurologist, NOT my gastroentirologist, and NOT my diabetes eye specialist (yep, I've talked to ALL of them since this happened!) who brought up a possible connection to celiac disease and the TIA. It could very well be arbitrary, she said, and that it could perhaps be related to me having had untreated celiac for so long. She was quick to admit that it is beyond her scope of expert knowledge, but she does know that untreated celiac disease can have neurological effects. I'm impressed. But the GI doc and the neurologist said NOTHING about this. It's their specialty!

Now I wait for an MRI...the waiting lists are very long here in Ontario, so if it's a ridiculous wait I'm heading to New York and I'll pay for it. There goes our mortgage payment!...

Yep Emily- my GP is smarter than 99% of the other doctors (specialists) I've seen.

I'm sorry the waiting lists are so long for an MRI....that's weird. I would think if you had a TIA they would get you in soon. How are you feeling? Hugs, Beverly

[elye]

Hey, Beverly,

You know, I'm actually feeling (physically) very well. I went for a blistering run this morning, I think to run away from all of this, and it did take me away from it, at least for a while. But you guys are a big part of my therapy, there's no question. I think of your husband now, Beverly, and hope all is well with him. And of course with you, because I've looked over at my terrific husband over the last few days and thought to myself, "wow. What a terrific support system I have. And hardly anyone thinks about how HE'S doing through all of this". So I thank him, often. I hope your hubby has thanked you, because it can be every bit as devastating and life-altering for the caregiver and loved one.

[Guest BERNESES]

Oh, you're so sweet. He has thanked me copiously. It's kind of strange being in the caregiver role (not that I really am right now but definitely was a few weeks ago- now I'm sick ). It gave me an awful lot of perspective into what it's like to be on the other side when you really know there's nothing you can do to "fix" it. Just be there for support, love, hugs, doctor's appointments etc. I'd say it is equally as stressful, in some ways almost more.

Your husband sounds like the bomb!