New Here - Anyone Had An Experience Like Mine?

[JPercy]

Hey there,

New member, been diagnosed about 2 months ago. Doing my absolute upmost to be gluten free. Only really eating straight up meat (fish, steak, some pork) and vegetables. Gluten free cereal for breakfast etc.

I may have been a sufferer for many, many years, as I have had a problem with depression and fatigue as long as I can remember.

So heres my story, would like some opinions and related experiences if thats possible.

Around 2 - 3 years ago my health started to go downhill. I used to be fit. I was running 4 times a week, and weight training. I had a lay off from running or exercise for around 2 weeks and then I went for my usual run one day and suddenly I couldn't even make it around the block, felt like I was going to pass out, I just couldn't breathe. I took a little break from exercise then but even just walking started to be hard. I was getting so much chest pain, even just walking around town was getting to be a real struggle.

The chest pain and overall feeling of unfitness sort of platued out, in that it reached a point that was managable but didn't get any worse. I could still do things to an acceptable level, generally I could live. Heaps of chest pain. Saw a doctor and a cardioligist and he said that while my ECG showed some abnormal results he didn't see why any chest pain would be heart related. He said it was probably bad acid reflux and pescribed me those protien pump inhibitors.

Anyway, fast forwarding a bit, I got very sick, I came down with a severe bout of flu/pneumonia which had me bed ridden and throwing up for 3 weeks straight. It was during the end of this flu that I got the real signs of celiac disease, very pale poo mainly, also very burning itchy poo. And a few other things that I forget now. I had the official test and came back positive.

I have been gluten free for 2 or maybe even 3 months now. My physical health seems to be getting worse. i can barely walk even 20 steps now without getting an intense pressure in my neck and head/face. Even light exertion makes weird vains stick out on my face and my head seems to swell up. If I try to run even a couple of steps I feel like I am going to pass out. Even just getting up off the couch often has me leaning against walls and door frames. Any type of bending over or squatting down gives me intense chest pain and a wave of exhaustion. Whenever I take in a deep breath my heart beats so powerfully and loudly. Every night lying down I can feel my heart beat so strongly it keeps me awake. I wonder if maybe I am so swollen up inside or something around the heart area because of the celiacs. Before I had the flu and got the full on symptoms of celiacs I have never had any symptoms like this.

I wonder if maybe I have developed another allergy like soy allergy or something? Can celiac affect your heart this bad? My life is really bad right now. I have gone from being extremely fit to needing to lean against a wall after walking from one side of my house to the other.

Anyone have any similar heart related experiences?

Thanks in advance,

Julian

[ravenwoodglass]

Hi Julian and welcome. Are you taking any supplements? Have they checked your B12 and iron levels? When you had the ECG done did they do an ultrasound or a stress test?

I think you should consider going back to the doctor. Tell him what is happening. I am not a doctor but I would imagine they might want to test you while bringing on the 'spell'. The stress test may be what they do since your ECG did show some abnormalities. I have had this done and it was no biggy. In my case the years of inflammation from celiac may have contributed to a thickening in my heart wall but nothing has advanced any farther now that I am gluten-free. This could be caused by any number of things and may be as simple as your body still not absorbing nutrients in which case sublingual B12, calcium and magnesium, vitamin D may help.

Keep us posted on how your doing.

[dilettantesteph]

Some of those gluten free cereals have small amounts of gluten contamination. Why don't you try cutting that out and see if that helps? I found that celiac greatly affected my athletic ability and energy. It is a good idea to keep your diet really pure at first. Once you get healthy you can experiment with "gluten free" foods. A lot of people seem to get more sensitive to gluten after they cut most of it out of their diets. Good luck.

[RiceGuy]

The supplements mentioned by ravenwoodglass would be a good first step. Just make sure they're gluten-free.

Dairy is often problematic at first, so you may need to avoid that for a while. Some people are able to add it back into their diets once they've healed, while others aren't. In fact, you may want to avoid most or all the top allergens for the time being.

However, it does sound to me like there's something more than Celiac going on. I don't know if it is possible for a stroke to cause what you're experiencing, but that's what comes to mind.

I hope you feel better soon!

[chasbari]

Many similarities and relatively new to this as well. The gluten free regimen seemed to keep me from feeling worse initially but I kept finding that there were "safe" foods that made me much worse. Not sure where the leaky gut comes in but I would have major heart palpitations after meals and my rheumatoid arthritis would flare much worse. Felt like I had a rusty exoskeleton on that made it nearly impossible to move, let alone walk up or down steps. I finally went paleo and a very strict version of it for the time being. I no longer have the blurry post meal vision and palpitations and am even starting to settle down in the daily D department. Been so long I forgot what that was like. I have to be very careful with the workouts thus far or I can push too far as I am not getting anywhere close to the food mileage that a healthy body would get. It's like, if my family gets the theoretical 25 MPG from their caloric intake I am only getting 2 MPG and it takes a lot of fruits and vegetables..the most highly accessible and easily digested vegetables (provided they are steamed plain) to keep up with my caloric needs right now. Corn, soy, grains, eggs, nightshades like potatoes, tomatoes, eggplant and paprika all seem to act like nutritional blockers for me and I end up bloated, weak and very uncomfortable if I try to mix those in. Gluten... well, those not only block but also destroy. I keep my focus on my short list of safe to eat foods and prepare them the simplest way possible. I have also found that fat is a real problem. Chicken has to be as lean as possible especially. I accidentally, three times now, have taken in what I would consider a small amount of congealed or gelled chicken fat on some cold chicken only to have disastrous multi day long consequences.. feeling a bit better today thanks! I am very able to tolerate EVOO as a dressing on foods I am prepping to grill or to add after steamed for some extra calories but excess animal fat is a big no-no for me. You should keep a food diary and be very stubborn about what you are willing to add once you determine your safe list... Oh, I almost forgot. Nuts and walnuts seem to have the same effect on me as the chicken fat. I thought I was being CC'd or glutened and we went back and checked and re-checked. the fat and the nuts were the only things and it started to make sense when we saw the pattern.

Good luck!

Chuck

[JPercy]

Thanks so much for your responses and help so far. Much appreciated.

[Tallforagirl]

Around 2 - 3 years ago my health started to go downhill. I used to be fit. I was running 4 times a week, and weight training. I had a lay off from running or exercise for around 2 weeks and then I went for my usual run one day and suddenly I couldn't even make it around the block, felt like I was going to pass out, I just couldn't breathe. I took a little break from exercise then but even just walking started to be hard. I was getting so much chest pain, even just walking around town was getting to be a real struggle...

...i can barely walk even 20 steps now without getting an intense pressure in my neck and head/face. Even light exertion makes weird vains stick out on my face and my head seems to swell up. If I try to run even a couple of steps I feel like I am going to pass out. Even just getting up off the couch often has me leaning against walls and door frames. Any type of bending over or squatting down gives me intense chest pain and a wave of exhaustion. Whenever I take in a deep breath my heart beats so powerfully and loudly. Every night lying down I can feel my heart beat so strongly it keeps me awake. I wonder if maybe I am so swollen up inside or something around the heart area because of the celiacs. Before I had the flu and got the full on symptoms of celiacs I have never had any symptoms like this.

Has a full blood count been done to check for anaemia?

"Anemia goes undetected in many people, and symptoms can be small and vague. Most commonly, people with anemia report a feeling of weakness or fatigue in general or during exercise, general malaise and sometimes poor concentration. People with more severe anemia often report dyspnea (shortness of breath) on exertion. Very severe anemia prompts the body to compensate by increasing cardiac output, leading to palpitations and sweatiness, and to heart failure." (from Wikipedia)

By blocking absorption of nutrients, celiac disease can commonly cause anaemia.

[cattriona]

tallfora girl has a point - not too long ago i found myself being very out of breath and little tasks such as going up a flight of stairs resulted in my heart beating really fast and shortness of breath. i also had palpitations and cramping around the chest area. also, something that's important is to make sure you're getting enough vitamin b. this also helps regulate heartbeat and the respiratory system. make sure you take a multivitamin that has all the vitamin b.s in it. i was also recently informed by other (wonderful) members of the forum that you need b12 to help your iron absorption.

hope this helps

[flowerchild]

Hi. I'm new too, although I've been following these forums since my diagnosis nearly eight months ago. I too had extreme muscle fatigue and all over exhaustion and weakness which seemed strange after a lifetime of walking and exercising. 3 ankle sprains, 2 torn hamstrings, a torn bicep and a broken leg - in addition to various severe digestive complaints, yeast and bladder infections and unexplained heart rhythm disturbances are what drove me to find answers. The neurologist, gastroenterologist, cardiologist, gynecologist and orthopedist all threw up their hands but one sent me to an endocrinologist who found deficiencies in B vitamins, calcium and vitamin D. She said "you might consider eliminating dairy and wheat" and those were the magic words. The D was so low it barely registered even after 4 months of high dose supplementation. Now it's finally approaching normal levels and my muscle strength is increasing. My hair has stopped falling out, my skin and nails are looking normal and I'm feeling great - until I accidentally blunder into gluten. Dairy no longer seems to be a problem. So- definitely get your D levels checked. After years of barely functioning digestion you could be short of many vitamins and minerals.