Can Someone Help Me?

[Megan0326]

So I'm off to the doctor today for about my zillionth visit in the last two years. They can't figure out what's wrong with me, so I poked around on the intertubes and found you folks. I'm just hoping to get some idea of what the heck is wrong with me so that I can try to help the docs (a little backward, eh?) figure out how to fix me. I'm not asking for a diagnosis - I know you're not doctors. Mostly just looking for guidance as to whether being tested for gluten sensitivity is worth bringing up.

My problems started with really terrible fatigue. I was tired all the time, and irritable because I was tired all the time. They tested my blood for just about everything known to man, sent me to an endocrinologist, and still had no idea why I was so tired. To look at me on paper, there's literally nothing the matter. The fatigue is coupled with a recurring skin rash (each time I take prednisone and it disappears for the time being), horrific abdominal pain (one night about a month ago I thought we were going to have to go to the ER), alternating constipation and diarrhea, eczema, the most rank and frequent gas I've ever experienced (My husband's about ready to make me sleep in the garage.), bloating, some heartburn, a bit of restless leg, and to top it all off, I've started having soaking night sweats. I just feel tired and sick all the time. Any thoughts?

[Skylark]

Rash, all sorts of GI trouble, and fatigue? Celiac testing makes sense to me.

[sb2178]

I'd even suggest a biopsy if the blood work comes back questionable or negative-- false negatives do occur and you have to cross a certain threshold of gluten intake for it to be accurate. I'm in favor of the biopsy because it's very certain, and I at least am not tempted to "cheat" on the diet the way I would be without it. You HAVE to be on gluten for it to be positive, though, so don't trial the gluten-free diet unless you are willing to go back on it for a biopsy. I think they can do either the rash or your intestines, but you'll have to investigate.

If everything is neg, maybe it's a classic allergy (or multiple allergies)?

Good luck!

[imouse1]

I would definitely go in. I had no idea that I could even have gluten anything because I've been flour-fed my whole life. I was extremely tired--some days I couldn't even get out of bed. There were days I couldn't walk--tripping up the stairs isn't as fun as it looks. With the exception of overeating, my diet gave me great cholesterol and other stats that would make sense with my thick figure. (Taking supplments made me REALLY sick so I had to get all my vitamins and minerals the old-fashioned way.) No chance of diabetes (they tested SEVERAL times because of a family history). I was bounced around from person to person taking turns in urgent care when I would go in because my parents thought I could get something--ANYTHING--to alleviate the symptoms. It was insane. For the last four years I've had bloating to the point that I have three different sizes of pants! I'd bloat, lose weight, be so nauseated I couldn't eat, get tired and weak (from not eating), then finally the bloat would go down and I'd get extreme diarrhea and gas. Then I'd start to gain weight and fit into my smaller pants (go figure lol). What's terrible is that I used to make a fist with my left hand and punch in my gut where the bloating was worst to control the pain and still find myself doing it even though I don't have the symptoms anymore. It's been four years of ultrasounds, CTs, and antibiotics for my doctor to finally diagnose me with at least gluten intolerance. Apparently you have to live a gluten-free life for awhile before you can get the test done but let me tell ya, I won't go back to living in the flour-infested world. I still eat all the same vegetables in the same proportions and I don't feel sick. In fact, the only time I have felt sick since starting the gluten-free lifestyle was when I thought "one piece of delicious, homemade Irish brown bread can't possibly kill me". Well, it didn't but I wished it had (that's a three-day revisit to every symptom you had that you don't want to remember).

Anyway, definitely go in to the doctor and demand a gluten screening. I think I got lucky because I didn't have any permanent damage. I don't think I'll end up having a diagnosis of Celiac's but I am gluten intolerant at the very least. You may not have Celiac's but I would recommend going in.

Until you can get tested, though, you may want to try a couple of things to control your symptoms. If you don't have kidney stone problems, try eating yogurt three times a day because the probiotics help to promote the good bacteria in your intestines which can help you get it out faster (a good thing since your guts can't process the gluten at all). Unfortunately, if you have a family history or personal history of gall stones or kidney stones, this could aggravate that because of all the calcium if you also have an already high calcium diet. (Drink plenty of water and keep some pain killers handy T.T). A less drastic thing if you need to save the fat/calories or prefer pills, try a full-spectrum enzyme. These actually work better than the probiotics and can help control the gas and other GI symptoms you might be feeling. It actually breaks down the food in your intestines so your guts aren't working insanely hard for nothing. It's the stuff you would normally be getting from fruits and vegetables if your guts weren't so desperately trying to deal with the gluten. I don't know that any brand of yogurt or full-spectrum enzymes are better than the other, but it will depend on your taste and smell preferences. Hope that helps and it wasn't TMI!

[Megan0326]

Thanks, all. They took my blood for a Celiac panel...should be back today or tomorrow. In the meantime, I'm on probiotics. We'll see how it goes!

[jbrushes]

...[everything you said]...

I thought I was the only one in the world who has your exact problem, gastricly speaking.

I initially got sick in 1983 - yep, long long time ago with the symptoms you describe. Not only was my ol' lady running out the door but so was my dog. Neither came back. And the work place -- forget it, the work wasn't bad, but the people would harshly and cruelly let me know.

Off to the doctors for about a year; the result was diagnosis of everything from crones to ibs, to a suggestion of mal-absorbtion to colitis to it was all in my head. Every diagnosis made was overturned. To this day, no test has ever came back positive for any disease. From the tests - I'm the shining example of health, although I weigh in at a whopping 107 pounds at 5'7"; have numbness in different sections of my body and mild skin rashes and a lot of irritability, bloating, gas, dizziness. Never mind, from time to time, breath that can make a camel cry.

The best thing I did since, is start watching my diet and striking everything from it that irritated my system. Soda(pop), oils, spices, all dairy products, sauces, candy bars, cookies, red meat, pork, potatos, vegitables and yes, most fruits. Think bland, think blander than bland. Then I went on a regiment of metimucill, the bowels wouldn't work without it; but, over time-- about a month, at least I was getting regular. Sticking to a schedule is a good thing. The malodorous gas disappeared and was replaced with the smell of what ever I ate. My guts still feel like they are twisting and turning all the time, but I can go to the store once in a while.

Some years later a doctor did some kind of allergy test, and he said I was allergic to something - he never followed up on it- just started pumping me full of prescription strength benadryl. I got tired of taking it, and it really didn't work very well.

To make a very long story shorter, I started having problems more often around December. Now I'm really tired of it and need to do something. Any faith I may have had with doctors is long gone. So five days ago after about a week of research into celiac, I decided to try gluten free. Less than 3 days and I don't feel bloated, still a little gas, but nothing like before. I can actually move around, go figure. I'm not trying to say that I have celiac or a gluten allergy, I really don't know. But I do know, I can't afford doctors, I really don't trust them, and my tummy doesn't feel crappie. That for me is perhaps a start in the right direction.

But, try the metimucil and watch your diet closely while you try and figure out what to do. It gets much easier after a while, really.

All the best... hang in there.