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Fighting A Losing Battle Still - And Ruining My Life!
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On a appointment with my neurologist, it was discovered that I'm having neurological impairments. I knew the obvious signs of memory issues, confusion and such but apparently I'm unable to walk heel-to-toe and unable to close my eyes without falling over. Weirdly, I'm perfectly okay when it's dark in the room with my eyes open. So, I'm scheduled for an MRI.

That was Friday. Sunday, after hauling in groceries, I'm struck with extreme fatigue, chest pains, and a feeling of a high pulse. The symptoms were so bad I had to sit down like a blob of Jell-O for 15 minutes. Dismissing it as overexersion as it passed, I got up, rather sleepily, and continue on my day. It happened again that evening I thought it was weird but again dismissed it as overexersion as I was again hauling things out of my car. Yesterday it happened about 6 or 7 times. But I couldn't ignore it any longer. The episodes lasted 30 minutes to an hour during which my pulse was not exceedly high. 90-95 bpm sitting and oddly it would jump, when I'd pry myself up to standing, to 115-125bpm. My normal resting pulse is around 80 bpm. But during these episodes I would become so tired I'd barely be able to stay awake - try being in the middle of class when these happen. And that's the thing too - they happen after exercise (walking up to the 3rd floor, walking across campus, etc) but also when I'm just sitting in class or watching TV.

I've read some articles on how gluten intolerance is linked to pericardial arryhthmias. The problem is...there's absolutly no gluten in my diet. So my question is, can the problems that can be caused by gluten be delayed? I haven't actually knowingly consumed gluten - as in, I haven't gone out and had a piece of cake or pizza or bowl of pasta or what not. I'm actually terrified that this will not ruin my college career - I can't get any work done, between my neurological problems with memory, concentration, etc and the fatigue from the cardiac problems leading to my sleeping all the time - but this is my heart and brain. I feel like my life is literally deteriorating and I can't stop it.

So, my thought process is this: that my symptoms are a delayed effect from years of gluten consumptions while being gluten intolerant and not knowing. OR that something in my diet contains gluten - possibly my medications, the brand names are said to be gluten free but I take generics and I cannot find info about these specifically being gluten free or not. OR my electrolytes are off causing the heart problems (hypo or hyper), I've already discontinued my calcium supplement out of fear of hypercalcemia. OR I'm moderately/severely dehydrated without knowing it which may or may not be related to kidney problems - I have noticed for the past month that I only urinate 2-3 times a day. OR there's something wrong with my brain structurally like a tumor which is completely unrelated to gluten intolerance.

I just don't know what to do at this point. I've got a team of doctors but they seem puzzled by some of my symptoms. I want to be in college desperately, I love it, but I'm barely functioning work wise - however, the work I do complete is always of good quality. How do I cope with a life that is literally falling apart? Maybe some of you guys and gals with experience could advise me on how to handle the situation? I'm really confused as to my next step. Seriously was debating just going to the ER tonight after one of my heart episodes lasted 1.5 hours. I don't know...help/advice on the general situation?

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I am very sorry to hear that this is happening to you.

Who is on your team of doctors? What kinds of things have they looked at so far?

If you are having arrhythmias that cause you the kinds of troubles you are having, it really is something that needs to be urgently evaluated by a doctor. Do you have a cardiologist?

It would not be wise to play guessing games here.

All of your suggestions are valid. Yes, gluten can cause neurological problems. Yes, electrolyte or other nutritional imbalances can cause arrhythmia. You could have a systemic infection, that can cause arrhythmia. You could have a thyroid problem. You could be suffering an adrenal malfunction.

There are so many things, and none are do-it-yourself.

I do pray you get connected with the right doctor, one who is curious and caring, and a real detective.

This sound like it has been a recent change in your health, not long-term. How long have you been having this?

What is your age-range?

Best to you.

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Bexxa.in some unlucky individuals the gluten also attacks the nervous system. It can cause gluten ataxia and other neurological impairments, anxiety, confusion, brain fog, memory issues. It can also, as I can personally testify, affect your heart rate. I have suffered for many years with sudden tachycardia and atrial fibrillation which I Knew was coming from what I was eating but it took me a loooonngg while to figure out which ones and why. The good news is that this is probably not a structural heart issue, but merely?? (should I say that) a problem with the electrical wiring in your heart. Your electrolytes can play a big part in this. It is important for proper heart function to have the right levels of magnesium and potassium, and if I were you I would get some supplements of both right away.

What kinds of doctors have you seen? Have you seen a neurologist? Have you seen a cardiologist? Are you still covered under your parents' insurance? If so, and you have not had either of these evaluations I think it is important that you do both right away. And it is important that both know that you suspect these symptoms come from what you are eating.

Now the tendency for most doctors is to laugh that off, so you must do your research and spell it out to them. Gluten can cause symptoms that mimic MS, and cause lesions on the brain that show up as unidentifed bright objects (UBO's) which are like MS lesions but different. There are other posters here on the forum who will tell you about these.

For myself (and this may not apply to you at all, I just throw it out there because otherwise how would you know about it?) I have discovered that what happens to my heart is caused by lectins which are glycoproteins. There is a lectin glycoprotein in gluten called wheat germ agglutin). Lectins are found in varying quantities in all plant based foods -- they are the plants' natural protection against predators -- and I am sensitive to many of them. This may (or may NOT) be true for you. If you are sensitive to them, they bind to sugars on the surface of cells and cause havoc in your body. Not saying that this is your problem, mind you, just alerting you to a potential source of trouble.

I think the first thing I would do is consult a cardiologist and ask to wear a Holter monitor which will record for 24 hours what is happening with your heart rate and rhythm. If it does not happen that frequently you can get one that runs for longer.

And I am sure you have seen a neurologist. Ask for an MRI of the brain and see if you have any of these UBO's.

That would be where I would start.

Good luck with your detective work and I hope you find some doctors who are receptive to food-based physical problems. :)

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Yes, have your magnesium level tested as well as all of your B vitamins. Although you're not eating any gluten, you may be suffering from nutritional deficiencies, which can cause many of the symptoms you've described (especially B vitamins, but other deficiencies may be playing a part).

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The symptoms you are experiencing may not all be the same as everyone else's but neither were mine. I was so weak before I was diagnosed I was walking with a cane and I felt like a bag of jello 24/7 even resting with my feet up or laid in bed my whole body trembled (on the inside) and couldn't rest for it. The reason for it turned out to be severe anaemia and malnutrition because I wasn't absorbing nutrients from my food because of the Coeliacs disease. I ended up being prescribed iron and vitamin D by my doctor (we are not blessed with the same amount of sunshine here in Britiain) and ended up taking a boat load of other vitamin supplements. It does take time to work it all out and I'm sure getting stressed does not help at all. (P.S. I also have an under active thyroid but since I've gone gluten free that has actually improved and the doctor has reduced my medication). Have you had your thyroid levels and blood count checked?

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Hmmmm.....I've reread your posting several times and am concerned. If your nutrient levels come out fine, I think a trip to the ER might very well be in order. They should check you into the hospital and keep you there until they determine what's wrong. Your symptoms can mean anything from nutritional deficiencies to heart arrhythmia to an aortic dissection to a blood clot in your heart to ???? You are wise to stay on top of this and demand answers from your doctors. If they're clueless, then, yes, please visit your ER. At least, the doctors there will have a different perspective and may run additional tests that your other doctors may not have thought of. Also, if possible, bring a relative or friend with you to serve as an advocate. When you're not feeling well, it's easy for the doctors to dismiss your symptoms and send you on your way--an advocate can stand up for you, attest that you are NOT yourself, and that you need medical help ASAP. Be sure to impress on your advocate ahead of time what you expect him/her to do on her behalf.

Please let us know how you eventually resolve this problem, okay? Good luck!

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    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
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    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
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