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    Do you have questions about celiac disease or the gluten-free diet?

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Hi everyone. Forgive me if this turns into a really long story, but I'm pretty nervous and I have a lot of questions, probably, so try to bear with me.

I'm a college student - the prototypical starving type, and a science major (yay chemistry!) to boot. Even though I've always taken care of myself - eaten good foot (vegetables! \o/), been active (soccer, martial arts, hiking and backpacking, kayaking, running), my health has never been great. I've always gotten sick easily and had other health problems. The last two years, though, my health really went down the tubes. I'd get sick, stay sick for six to eight weeks, get better for a week or two, then back to being sick. During the periods I was sick, I was pretty much just able to sleep and (barely) keep up with my coursework. I couldn't drive, I couldn't excercise, I couldn't do much of anything except sleep and sleep. I'd have muscle and joint pain, constant GI problems, lung and bronchial problems, anemia, and trouble with bleeding (actually, the bleeding is the easy part. it's the stopping that is hard). I'd get a paper cut, and it would bleed for days. And I was constantly exhausted, despite sleeping 12+ hours a night. Needless to say, I couldn't keep a job. I would go to the doctor, be diagnosed with sinusitis, or massive bronchitis, or something in that line, be given some antibiotics, and be sent on my way. No one would pay any attention to my complaints of the other symptoms, so I just dealt with it.

Understand, I am not a tiny, weak little guy. Through high school, I did martial arts. I was (and still am, mostly) build like a linebacker, and I could move like you wouldn't believe. But, I've basicly spent two years being ill. The whole thing came to a head this spring when I got so sick I had to be taken to the emergency room, and was diagnosed with a fungal respiratory infection. They wanted to keep me in the hospital, but there was no way we could afford it, so they gave me a prescription for some really powerful antibiotics and stuff, and I went on, because, well. I didn't really have much choice. The drugs got rid of the lung problems, for about 3 weeks, but then I was sick again. The doctors said it was sinusitis, and things continued as they had, through the summer, until about 6 weeks ago.

I was sitting in a common studying area, eating my taco salad from Taco Bueno. I got finished and, as usual after I eat, I felt sick, and went to deal with that. I come back, and one of the ladies in my organic chem class says to me, "you have a food intolerance. or allergy. or something.". This woman is a nurse in a dietitian's office, so she's not just some random person. Anyway, I'd never heard of anything like a food allergy, so we talked about it. She said that the right way to determine what was bothering me would to get on a special diet with no common foods that cause reactions, than reintroduce things one at a time. I said that I really couldn't work around that with my schedule (and total lack of energy for anything extra), so she recommended eliminating wheat and gluten, since those are the most common. This was on a wednesday night, so I decided to try it, figuring that I had nothing to lose, really. So starting the next day, I made sure I didn't eat anything with wheat or any of the gluten-containing grains (she gave me a list - wheat, barley, rye, and oats). I've been off of all dairy products, for about 3 years, bust she recommended avoiding those, too. Anyway, by saturday, for the first time in years, I woke up and actually felt pretty good! And by sunday, I no longer had any cramps or anything! I had been having the worst time with my digestion (yay blood?), but I've now been on this diet for 6 weeks, as of tomorrow, anyway, and have had nary a problem since getting on it. It's very nice to not have to run to the bathroom 15-20 minutes after a meal.

So my questions are these. My family is pretty tight on money. We always have been, and with my brother and I going to college, even with financial aid, things are very, very tight. Is there any benefit, other than peace of mind and finally knowing what the hell is really going on, to getting tested for a formal diagnosis? Or will it hurt me to assume that, since I've found a treatment on my own that seems to work, that I can keep it up and handle it myself? Is my experience normal?

There are several reasons that I am asking here, with the first being it's one of the first sites with a forum that came up when I googled "gluten intolerance". The second being that a good friend of mine was diagnosed with celiac a few semesters ago, both by dietary testing and later by gastroscopic biopsy, after going from 120 lbs to 89 lbs in a single semester. She's 5'11", so she's not a tiny girl. It was really scary. I just didn't know what it was before. And thirdly, because after reading the stuff here, I have had every symptom in the list. I'm not a fan of, or the type to self-diagnose, because I know that the mind can have a large effect on the body and the way it works. Though I've done most of my research after the fact of the diet helping (a lot), so I don't know.

Any advice? I'm pretty lost, and very uncertain of what I'm doing...

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You have actually done done the best diagnostic tool you can have. You have tried eliminating gluten and you have gotten better. To be formally diagnosed you would have to add gluten back in and then get an endoscopy that could very well show a false negative. If that was positive you would still be back to where you are now. A gluten free diet.

You don't need a doctors permission to be gluten free if it is helping you that is what matters most. Personally I would just continue with the diet. Welcome to the board and feel free to ask any question you need to. You may also want to check out the celiac sprue associtations web site and their guidelines. I hope you continue to improve.

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For feeling better, you have all you need.

The one benefit to a formal diagnosis is to differentiate between celiac, gluten allergy or some other digestive based intolerance. In all of those cases the treatment will be the same - avoid gluten. However, many diseases tend to occur in clusters. If you have celiac you are more likely to have other auto-immune diseases. If you have a gluten allergy you are more likely to have other allergies.

The cruel twist is that you have to be consuming gluten for the celiac tests to be positive. That means you'll feel like crap in the interim. That is a trade-off that only you can make. The financial part just makes the decision more complicated.

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I am glad you have the answer to feeling better. It doesn't really matter if you have an official diagnosis or not if you have found a way to be healthy on your own. There is no dietary need for gluten. Plenty of people self-diagnose.

I think the only reason to go with testing is if your progress is somewhat ambiguous in the beginning when you go gluten-free, you have doubting loved ones, or you think you can't stick with the diet without a test result. These are the reasons I confirmed with testing with Enterolab. For me, the second factor was really key. My symptoms were not as dramatic as yours and my husband was thinking my then modest progress might all be in my head. It didn't help that my system went back and forth for awhile getting used to the diet and that I inadvertently glutened myself. Also, it turns out I am intolerant to soy as well, which I hadn't eliminated. I figured if I was going to make him eat the gluten-free meals I made, there should be a reason. Once I got the Enterolab results he was completely on board with what I had to do.

With Enterolab, you don't have to be on gluten to do the testing. Not everyone accepts this testing because it hasn't been published yet and you probably couldn't get insurance to pay for it. But many on this board are satisfied with their experience. Yes, there are doubters on the board, too. If you want to read further:



These articles also give you a start in understanding about celiac as a subset of the larger problem of gluten intolerance. The traditional tests are only for celiac. Some doctors will only diagnose that. There really are a number of schools of thought among doctors at this point. Enterolab will give you a diagnosis of gluten intolerance, not celiac.

If you wanted to do traditional testing for celiac, you would have to go back on gluten. Given your experience, I really couldn't recommend doing that. It would be awful to hurt yourself like that again, just to be either: told that you shouldn't eat gluten (which you already KNOW) or given a false negative (which happens a fair amount of times -- and you probably would continue not to eat gluten anyway because of your response ...).

I guess I can think of another reason to do testing -- if your college's food service won't accommodate you unless you have some official diagnosis. But Enterolab could suffice for these purposes and you wouldn't have to make yourself sick by eating gluten again. (To save money, there really is no need for the expensive gene testing. Most people will end up getting either celiac or gluten intolerance genes, which don't, by themselves, indicate that there is a problem. Many people have the genes without any gluten problems at all.)

Are you on a probiotic, perchance? You mention all these courses of antibiotics. Those can kill off the beneficial bacteria in your gut and thus lead to continuing problems. I know money is tight, but I think it would be worth it to take one at least for awhile so you can replenish the good bacteria. Here is one article on the subject:


One other word of advice. You may wish to avoid soy also. Or at least monitor how you feel after you consume it. This seems to be a common third problem (after gluten and dairy). Sometimes the symptoms are subtle. I didn't even suspect a soy problem -- I got the test because it was bundled in the egg test (and eggs, even my husband had come to admit, were a big problem for me). I dropped out soy, just to see, and some other problems that I didn't think were diet-related went away. I know someone who cut out gluten and dairy and generally felt better, but not completely so. She cut out soy after hearing my experience and tells me she now feels completely better.

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Soy, hmm? I'll have to remember to record what happens when I eat it again, since I (just incidentally) have not had any that I know of since going on this diet.

My college's food service does not accomodate for anyone with special diets, so that doesn't matter so much. And most of my family have remarked at how much better I look, and that I act like I feel better. Which I do! The ones who are doubtful, and think I'm just vying for attention or something, well, I already didn't care about them, and this doesn't improve my faith or opinion in them, so yeah. Since the treatment for all three things is simply "avoid wheat and gluten", and the fact that I have NO money right now (yaaaay tuition!), I'll have to wait to get tested until later.

I know you said that I could do the Enterolab testing without going back on the gluten (which is a very good thing, imo), but won't the antibodies and other things that the tests detect fade away after a time (a few weeks? months? years?) without the gluten being present to cause the damage and trigger the creation of antibodies? Biology, biochemistry, and immunology are not exactly my strong points (though I should probably try to study up a bit).

I'm considering doing a test over Christmas break and seeing how sick going back on the gluten makes me, after being off of it for almost two months. Probably the inner scientist/masochist in me. I've read that exposure after elimination will cause more sever symptoms, and, in my mind at least, testing to see if this happens would either confirm or contradict what I've experienced so far. Is this a good idea? How sick could doing this make me? Would I be being a stupid, impulsive young person to try this?

Editus: Also, can one buy a probiotic at somewhere like Wal-mart? That's really the only place nearby. Otherwise it's somewhere like Amazon or something similar. I'm pretty wary of buying stuff from unfamiliar sites...

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Enterolab says that their gluten testing is valid for at least a year after eating gluten.

If you are uncertain of your response to gluten, I suppose you can test it. However, unless you are smarter than I am, you will probably inadvertently gluten yourself at some point (or have it done to you) and find out that way. :rolleyes: Since you are feeling so good right now, I don't know that this is necessary. I think you've found your answer, or more importantly, I think YOU think you've found your answer. The doubters will continue to doubt whatever you do, and they don't matter anyway.

Some people will recover from a glutening in a few days like me. Or at least my symptoms go away ... Others, though, will feel sick for weeks.

I have tested things where I wasn't sure. For instance, some folks who can't handle soy generally don't have a problem with soy oil or soy lecithin. I tried that and found the oil is a problem for me, the lecithin not that I could notice. But the only time I really had lecithin was in chocolate and in the meantime I found chocolate without it and found it perfectly fine.

I'm going to test my supposed yeast intolerance because I've never noticed a reaction. Also my score was right at the cutoff mark, and apparently a number of people with gluten problems start off with antiyeast antibodies too but they go away. It isn't a subject where a lot is written. Most seems to relate to Crohn's disease and how avoiding yeast helps with that.

But getting back to you ... are you really unsure at all? I would hate for you to spend your entire winter break sick without a good reason.

I googled "walmart probiotics" and found this:


Is there no Whole Foods, health food store, or pharmacy close by?

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Well, I've been sick for Christmas for as long as I can remember (might be just as interesting to see if that had something to do with diet?), so that wouldn't be any different, but I really do feel better, so I suppose that's good enough for now.

>> Is there no Whole Foods, health food store, or pharmacy close by?

Nearest Whole Foods is over an hour away. I live way out in the middle of nowhere. Next time I'm in the city, I'll see if I can go by. I think I saw something like a "Vitamin Shoppe" or something similar today. Would somewhere like that have it?

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