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Flushing, bowl discomfort, strange "attacks"...
Looking for some help or advice please….
Lot of stuff involved, so I'll try to as concise as possible. Last summer I had an "attack" which I'd driver myself to the ER over. Years ago (I'm a 42 yr old male) I suffered from panic attacks and had learned to deal with them and leave them behind. Though this had a couple elements of a panic attack (sweating, redness, feelings of cold/numbness in the hands, neck and feet), I could tell it was something else. They did a CAT scan, Xrays, urine and blood work amongst other things but found nothing wrong with me. These attacks continued with varied magnitude and frequency, but seemed to be related in some way to digestion. I had a mild discomfort in the bowl area, and (infrequently) some more acute pain in the center of my abdomen at my lower waistline. Most often I would be constipated. These attacks would sometimes wake me out of sound sleep, and only walking around seemed to offer any relief.
I later had urine tests for an endocrinologist which showed no adrenal abnormalities, and had a colonoscopy revealing nothing unusual other than some “erosions” at the sigmoid.
Blood work was negative for IBS and lactose intolerance, but ended up coming back positive for Celiac. I began a strict gluten-free diet and when tested again my count came back lower indicating that the diet seemed to be ok. I didn’t notice any improvement in my health though. I learned to be calmer when these things happened, and weeded out some of the symptoms which may have been panic related in response to the initial attacks. Now I get extreme flushing (face, neck, shoulders), abdominal discomfort, and extreme (I can fall asleep in a chair suddenly) tiredness as my most common symptoms. These seem to occur almost daily and tend to happen either after a bowel movement, or after I’d feel food moving up my digestive tract. Sometimes existing symptoms would improve after a bowl movement, but there’d almost always be a change.
I recently saw a second gastro doctor who suggested the possibility of a characinoid tumor, but the CAT scans, blood & urine work came back negative. Though I can generally make it though work ok, I can often spend hrs dealing with this once I’m home and it’s paralyzed my life since I can’t reliably go about normal errands or anything social. I was prescribed a small dosage (0.5mg x2) Clonazepam to take the edge off of the attacks though I’m not sure how much it helps. The only thing which seems to effect to problem is giving myself a warm-water enema, which generally (75% of the time) improves all the symptoms almost immediately.
Other info:
I’m 6’1” and about 260 so aye, overweight.
Though I’m next to inactive now, I was in pretty decent shape before the first attack walking 100-120 flights of stairs as exercise 4 or 5 days a week.
Suffer from some insomnia.
Any suggestions, ideas or advice about what to do next is appreciated.
Thank you,
-Lee
Lot of stuff involved, so I'll try to as concise as possible. Last summer I had an "attack" which I'd driver myself to the ER over. Years ago (I'm a 42 yr old male) I suffered from panic attacks and had learned to deal with them and leave them behind. Though this had a couple elements of a panic attack (sweating, redness, feelings of cold/numbness in the hands, neck and feet), I could tell it was something else. They did a CAT scan, Xrays, urine and blood work amongst other things but found nothing wrong with me. These attacks continued with varied magnitude and frequency, but seemed to be related in some way to digestion. I had a mild discomfort in the bowl area, and (infrequently) some more acute pain in the center of my abdomen at my lower waistline. Most often I would be constipated. These attacks would sometimes wake me out of sound sleep, and only walking around seemed to offer any relief.
I later had urine tests for an endocrinologist which showed no adrenal abnormalities, and had a colonoscopy revealing nothing unusual other than some “erosions” at the sigmoid.
Blood work was negative for IBS and lactose intolerance, but ended up coming back positive for Celiac. I began a strict gluten-free diet and when tested again my count came back lower indicating that the diet seemed to be ok. I didn’t notice any improvement in my health though. I learned to be calmer when these things happened, and weeded out some of the symptoms which may have been panic related in response to the initial attacks. Now I get extreme flushing (face, neck, shoulders), abdominal discomfort, and extreme (I can fall asleep in a chair suddenly) tiredness as my most common symptoms. These seem to occur almost daily and tend to happen either after a bowel movement, or after I’d feel food moving up my digestive tract. Sometimes existing symptoms would improve after a bowl movement, but there’d almost always be a change.
I recently saw a second gastro doctor who suggested the possibility of a characinoid tumor, but the CAT scans, blood & urine work came back negative. Though I can generally make it though work ok, I can often spend hrs dealing with this once I’m home and it’s paralyzed my life since I can’t reliably go about normal errands or anything social. I was prescribed a small dosage (0.5mg x2) Clonazepam to take the edge off of the attacks though I’m not sure how much it helps. The only thing which seems to effect to problem is giving myself a warm-water enema, which generally (75% of the time) improves all the symptoms almost immediately.
Other info:
I’m 6’1” and about 260 so aye, overweight.
Though I’m next to inactive now, I was in pretty decent shape before the first attack walking 100-120 flights of stairs as exercise 4 or 5 days a week.
Suffer from some insomnia.
Any suggestions, ideas or advice about what to do next is appreciated.
Thank you,
-Lee
Thanks again for the advice and the Kinnikinnick recommendation. I had not heard of that outfit, and they seem to have tons of different GF items! I'll give their bread a shot :)
-Lee
Lee, that walking around in a bubble could be the brain fog that affects many with celiac problems. People experience it in many ways. I have a friend who is a drummer who just 'loses the music' as he's playing. Another person I know says there are days she feels like her 'outline' is sharper than others - some days she's just plain fuzzy.
I know that others describe it as 'not being there' when they're in the same room as others.
Don't discount to problems associated with celiac disease...........do you know that it can present very much in the same manner as M.S. or alzheimer's disease???? And that isn't fun as you know.
If some of this IS celiac, you're going to have to work through it on your own. Sorry to say that, but most doc's don't realize just how bad it can be...........it can even show up as unexplained anger and horrendous frustration.
I'm not sure about which labs can do what, so you'd have to ask your doc about other testing for casein problems. But enterolab.com has a fecal antibody test that will check for casein problems.
Try kinnikinnick bread - toasted it isn't bad and it makes great sandwiches.
I know that others describe it as 'not being there' when they're in the same room as others.
Don't discount to problems associated with celiac disease...........do you know that it can present very much in the same manner as M.S. or alzheimer's disease???? And that isn't fun as you know.
If some of this IS celiac, you're going to have to work through it on your own. Sorry to say that, but most doc's don't realize just how bad it can be...........it can even show up as unexplained anger and horrendous frustration.
I'm not sure about which labs can do what, so you'd have to ask your doc about other testing for casein problems. But enterolab.com has a fecal antibody test that will check for casein problems.
Try kinnikinnick bread - toasted it isn't bad and it makes great sandwiches.
Before I eat anything, I generally research it online to see if there's a consensus that it's gluten-free. I do eat some snacks which fall into the potential cross-contamination category such as potato and corn chips. I also eat a lot of dairy, so I suppose the casein intolerance might be an issue. Is there a blood test for casein intolerance too?
I have not been checked for other food allergies, though I know I’m allergic to certain fruits and nuts (I think they call this the birch pollen allergy) but have avoided these uncooked since childhood. My diet has been restricted to mostly potato based meals (not a big meat eater). I’m avoiding MSG and artificial sweeteners just to be on the safe side too. Bread was always my best friend so it’s been a real rough six months or so, but I wouldn’t care too much if I was feeling better. I have heard it can take up to two years for the villi to heal, but since I wasn’t exhibiting any signs of malnutrition or related complications, I believe I wasn’t very far along in the Celiac progressing.
The attacks are frustrating and a bit disorienting. There’s often an intermittent loss of balance which occurs too. It’s not dizziness or weakness, but more like a feeling that I’m walking in one of those moonwalk bubbles. My 2nd gastro doctor has essentially given up on the issue as did my first. I’m hoping my primary care doctor can recommend someone who can direct me to an expert of some kind. If he can’t, I just don’t know enough about the medical community to figure out how to see the right person to figure this out.
Thank you very much for your response and suggestions.
-Lee
Lee, I know you realize that your symptoms do sound very much like carcinoid, so I hope your doc will continue to followup on that issue if you can't find any other answer. However, since you have celiac, are you absolutely sure that there is no wheat, rye, barley, oats or malt in any form, what so ever? My husband has celiac and he's been 'hit' by hidden sources quite a lot. Some rice products can have the vitamins 'glued' on by using gluten slurries, etc.
Have you also tried to find out if you're cross-reacting to other foods, like casein, the major protein in diary? I'm wondering if some of your reactions could be due to cross reaction. A lot of celiacs can't tolerate dairy (casein, not the lactose).
Also, because of the flushing, have you been checked for regular food allergies?
Have you also tried to find out if you're cross-reacting to other foods, like casein, the major protein in diary? I'm wondering if some of your reactions could be due to cross reaction. A lot of celiacs can't tolerate dairy (casein, not the lactose).
Also, because of the flushing, have you been checked for regular food allergies?
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