Mikael posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsGreetings. I'm new to these forums but I feel a sort of kinship all the same. And yet I honestly have no idea whether I am gluten intolerant. I'm just feeling so frustrated lately and would welcome feedback of any kind. I don't really have anyone I can talk to about my health concerns. First, a few random tidbits related to my health: I'm a 31 year old male, I've always been underweight, I'm prone to mild eczema, I've had a tremor in my left pinky finger since I was 19 or 20 (comes and goes), and twice when I was in my mid-teens I had a spontaneous pneumothorax (collapse) of my left lung. Oh, and for some reason I've had hives for the past 2 days. Ha. So, here's my story. Since I was 19 I have had digestive issues. Diarrhea, loose stools, gas. The issues started off as 'attacks' that would last anywhere from 3-5 days where everything I ate would go right through me. It was terrible. Then the attacks started coming more and more frequently until I was taking Pepto all the time. I saw a doctor when I was 20 who examined me and did some lab work, but he said everything looked normal. He suggested I may have IBS and told me Imodium might work better than the Pepto. In other words: you'll just have to deal with it. Well, it really changed my lifestyle as I'm sure many of you can relate. Fears of going to restaurants, or even big family meals at home. The idea of going out for the day now came with lots of nervousness and paranoia. And I'd often opt out. It took me a long time to work out what my trigger foods were: oatmeal, many cereals, tomato sauce (raw tomatoes are fine, though), potatoes (baked and mashed are bad, yet french fries are strangely ok), alcohol, fried bacon, lettuce, broccoli, onions, black pepper, etc. Now, the potatoes thing has me perplexed, because that seems to be a safe food for folks with gluten intolerance. Also, strangely, bread is one of my safe foods. It's like my go-to food when I want to settle my stomach, and I eat alot of it. But maybe it's just that my digestive system is so damaged and out of whack that even my trigger/safe foods can't be a 100% indicator of what's going on. Going to bed on an empty stomach is a sure fire way to mess up my system, and eating directly before going to bed is equally triggering. Lack of sleep triggers symptoms. It's a balancing act. About 3 and a half years ago, my daily Imodium regimen started making me constipated, so I actually cut back for the first time since the problems started. The issue was still there, I was still getting diarrhea and loose stools, but it has become slightly more predictable and manageable at this point. And I seem to go through cycles now, loose stools every day for 5 days or a week (or longer), and then I'll be regular for a few days, and sometimes even constipation occurs. However, my trigger foods are still my trigger foods, and need to be avoided. It was also about 3 and a half years ago that I began to notice what I would call some vascular issues. The veins in my hands and wrists started becoming very blue and prominent. I also noticed a vein under my left eye had become blue and enlarged. I found it curious but I figured it was just part of getting older. Well, a little over a year ago is when I began to worry. The veins in my hands and arms were becoming even more enlarged. While not an uncommon feature in guys, I was becoming self-conscious. The veins along my temples were also becoming quire visible. I was also getting these terrible weak spells. I would feel so shaky and nervous. Weak as a kitten. This feeling would usually only go away after a BM. I figured it couldn't hurt to get myself on an exercise regimen. I had an exercise bike in the house but, prior to this, I would only use it a few times a week on average, for 30-35 minutes, nothing too intensive. I decided to commit to using the bike daily for 45 minutes to an hour, which I did, and I stuck to this regimen for more than a year. The weak spells were reduced considerably as a result of the exercise. So here's what's scaring me and what prompted me to post: this vascular or circulation issue began to bug me more and more, until the point where I was becoming alarmed. The veins in my hands just absolutely swell sometimes. Really huge, and my hands turn red. Even the veins in the palms of my hands swell, and become very purple and blue. It commonly occurs if I'm warm, if I exercise, if I sit in a rigid upright position for too long, if I stand in one spot for too long, or if I do any moderate work with my hands like lifting a heavy object. Other times seemingly at random. My hands become very uncomfortable. I feel pressure, and some combination of mild burning, stinging or tingling. I've got blue areas on my lower lip now that I can only assume are the veins becoming visible, and I also feel a dull burning sensation at times, which freaks me out. My nose has a dull, blotchy red area that wasn't there a few months ago. The veins in my legs are feet are beginning to show the same pattern as my hands. Oftentimes, my whole body just feels bad. A kind of dull, stinging or burning feeling up and down my limbs, and in my lips. It seems to be better on cold days, when the veins constrict. If I go for a walk on a cold/cool day, I'll usually feel pretty decent upon returning and the symptoms are much less noticeable. For awhile, at least. All these symptoms just seem to be getting worse and worse as time goes on. From a superficial standpoint, my confidence is just destroyed every time I look in the mirror. I'm so disheartened. And the fact that I can no longer get my daily workout in, due to my hands swelling, really bums me out. I'm an uninsured American, but thankfully my city has a great clinic which takes patients like me at a reduced fee. I recently saw my new general practitioner on an initial visit (not a full exam, though he checked me out briefly), and basically tried to poor my heart out to him about how worried I was. But, while he seems like a really nice guy, he simply wasn't very concerned. He assured me that my circulation is fine, and he repeatedly told me I'm a healthy young man. He attributed the enlarged veins to the fact that the blood is oxygenated. My appointment happened to occur on a cold day, and the issue with my hands wasn't very noticeable at the time. When I mentioned my lips and nose, he dismissively (but good naturedly) said they're fine. He believes I'm just suffering from anxiety. And I am. I admitted as such to him, but a large part of that is due to these very real health concerns I'm experiencing. The whole thing left me deflated. I impatiently waited 2 months for that appointment, and I was left with no answers. When I mentioned gluten intolerance, he said that the current testing available is inconclusive but it wouldn't be a bad idea to go on a gluten-free diet and see what happens. At least he's open to that. Something the doc mentioned in passing is that I may have Raynaud's disease. However, upon researching this I'm not sure I fit the description. I've got a full physical coming up in about 10 days, and presumably I'll get some blood work done. I'm just so deflated and confused right now. Is it possible that my problems stem from gluten intolerance? I checked one of those vitamin deficiency charts, and my symptoms sort of match up with vitamin B2/riboflavin deficiency, from the 'purplish lips' to occasional eyelid twitches. But somehow I feel I'm grasping at straws here. But I really can't imagine that this is just my "normal," as my doc suggested. I feel like my circulatory system is just completely wrecked or something. I feel like I'm deteriorating. Do you kind people have any suggestions for me? Anything I should say to the doc? Anything in particular I would have him request the lab check my blood for, that he might not otherwise? This latter question is important because I'd like to have the option of going gluten-free once my testing is done and the holidays are over. I'm kind of clueless about all this. As an aside, I've had this head cold for about a week, and for the first couple of days I had very little appetite, didn't eat much at all. And what's funny is that on these days my vascular/circulatory symptoms were actually much improved. My hands were in good shape, no weird burning sensations and discomfort, etc. I also notice the symptoms seem to be worse after a heavy meal like pizza. So I get the impression that it seems to be at least partially affected by diet. Thanks so much for bearing with me. - Michael
Mikael replied to LOWNskater52's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsThe vein thing, I get that as well. Kinda freaks me out. Funny thing is, my new doctor suggested I may have Raynaud's Disease/Phenomenon, which, as far as I can tell, is an intolerance to cold. I did try cold showers, but they just cause me to shiver incessantly, basically rendering me unable to move. So, I'm doing lukewarm showers these days. Like you, the issue still occurs even in a mild shower, but not as badly as it did when I was still taking hot showers. Any shower-related unease has been minimized since eliminating hot showers. There were times when I would get nauseous to the point of nearly passing out, but I was probably taking showers that were way too hot. Just couldn't help myself.