I Need Advice!

[spunky]

I'm having trouble deciding about this: I can't believe it, but for the past two or three days I've been wondering if my thinking is on track, or if I'm just crazy.

First of all, I hate doctors and never go to any kind of health care professionals (except I've had to go to dentists lots of times)...so, 13 years ago, at the age of 40, I began to have some intestinal problems on and off. I had just switched to a vegetarian diet, and began eating lots of whole grains. I thought the intestinal things were just adjustment to a sudden increase in fiber. A few years later I moved on to veganism, and with removing the dairy and eggs from my diet, it seemed the intestinal symptoms became more of a nuisance. Again, I attributed that to even higher levels of fiber. Time went on and life was very busy, and to make a long story short, I eventually found myself having daily, painful, even almost debilitating symptoms. I was able to keep my job ONLY because I have the luxury of being confined in an office, all by myself, and two doors down from the restroom. If I'd had anything more public, I would've probably had to quit my job.

So after lots of reading and thinking, I decided to try going gluten free, and anyone who's come across my other posts probably thinks I'm sounding like a broken record on all of this by now, but I went gluten free 10 months ago. I knew from things I'd read not to expect too much right away, which was good, because I didn't get too much improvement immediately, but slowly I did began to see lots of changes. I was still sick, and even came to view myself as chronically ill during those first few months of my gluten free trial. Anyway, at 7 months, I realized I was feeling pretty good most days. Better than I'd remembered for years. Then I ate vegan, gluten-free (so I was promised!) soup at someone's house a couple of weeks before Thanksgiving and it ruined the entire month of November for me. I was sick, and still have a big scar on my face from a big sore "thing" that came up during all the intestinal turmoil.

So finally it all settled back down, and now I'm once again feeling good, much better than I can remember for ages. But now I'm feeling that this whole idea is just crazy: I'm doubting my ability and confidence in myself to diagnose and fix myself up like that...so I'm wondering...

Does anybody here think this points to celiac or gluten intolerance, or am I just crazy? I have charts I kept over several months with symptoms graphed out and I can visibly see symptoms slowly disappearing...but I still have this doubt about objectively knowing this in myself.

I'm thinking of taking a time when I'm feeling good and purposely eating something with gluten, just to see for myself if there's a reaction. But at the same time, I'm scared to try this. I wish now I'd gone to a doctor to get a real diagnosis, but, I'm afraid of them and feel they wouldn't have diagnosed me properly, because they NEVER have in the past.

I need to know for sure if gluten free is what has made me well. On the other hand, though, I feel I don't really want to go back to eating gluten if it isn't what made me well. So, I'm just confused and full of fears and doubts now. Physically, though, I'm feeling pretty good.

[CarlaB]

If you've been gluten-free for several months, it wouldn't be a bad idea to do a gluten challenge to verify that you react to gluten. Keep in mind though that some celiacs do not react immediately or at all to gluten in a symptomatic way, yet it does damage.

My daughter has been gluten-free for a few months now and I've seen no improvement in her symptoms ... she will be doing a gluten challenge after Christmas to see if she really has a problem with it.

If you feel better off gluten, and you feel worse when you challenge it, that should be enough information for anyone, including your doctor. If you feel better not eating it, what does it matter if it's celiac or not? Just don't eat it.

[ArtGirl]

I don't see doctors much either. I did have a blood test for food sensitivities that showed sensitivity to gluten, but I didn't understand the ramifications of that and didn't go gluten-free for many years. Having found this forum has helped me so much in understanding what it all means.

However, I, too, wanted to be sure and certainly didn't want to go the route of trying to find a competent doctor - besides, I didn't have insurance. So I paid for "the works" from Enterolab and got my answer.

I'd recommend Enterolab for your peace of mind about what is probably an accurate diagnosis on your part. Plus, you can also get the genetic testing to see if you have any genes related to celiac or gluten intolerance, which, for me, closed the deal on all the doubt.

[spunky]

Thanks. I might be too broke for the Enterolab...if I'd gone to a doctor, it would've been cheap because of the insurance, but as I said before, I haven't trusted doctors for a couple of decades and haven't been.

As far as doing my own little challenge...if I haven't touched, at least not on purpose, any gluten for the past 10 months...does anybody know how much gluten I should challenge myself with?

Like, should I have one whole doughnut, or a piece of one, or just how much? I feel scared to try it, but I feel nuts and would like a real answer. I realize I might not see any reaction for several days.

Has anybody tried this just on their own? I feel very nervous about doing it...and, maybe that's really my answer...maybe I know that gluten is it since I've been feeling better than I did for over 10 years.

I don't understand what happened to my thinking, though. All of the sudden I feel I can't reason this thing out, or that I'm missing something or just not feeling solid with my answer.

Thanks again, hopefully something will just give me my answer so I can just stop worrying and move on from there.

[ArtGirl]

  spunky said:

Has anybody tried this just on their own? I feel very nervous about doing it...and, maybe that's really my answer...maybe I know that gluten is it since I've been feeling better than I did for over 10 years.

Others have done the gluten challenge and hopefully they will give you the benefit of their experience. I seem to remember that they recommend just eating some whole wheat crackers or something that doesn't also contain another possible allergen, like milk, egg, soy, etc.

I've never done the gluten challenge on purpose. Accidental glutening has been enough of a challenge for me and I personally never want to repeat the experience.

[ArtGirl]

  spunky said:

I don't understand what happened to my thinking, though. All of the sudden I feel I can't reason this thing out, or that I'm missing something or just not feeling solid with my answer.

This could be brain fog from gluten or another allergy source. Don't worry too much about it - we've all been there and the fog eventually lifts and thinking becomes more clear.

[spunky]

Well it's kind of scary. I'll have to think about this for a while and see if I work up the nerve to do it.

Maybe at some point I'll stop worrying and just figure it doesn't make sense to do that if I'm feeling so good these days. I'm kind of afraid of either making myself really sick, or really confused if nothing happens when I try this. I don't want to be sick and I don't want to feel clueless...been there, done BOTH, and don't like either one!

It seems I've just lost of all my confidence in my own ability to reason these things out and problem solve. My husband thinks it definitely is gluten with me. I told him I'd feel better capable of "diagnosing" that in him than in myself...for some reason I just feel full of doubts or something.

[ArtGirl]

I can relate to this second-guessing about health issues. It's not like everything is cut and dried. And when one has been doing all the detective work without help of (competent) professionals (not to mention the setbacks from doctors who don't have a clue) it does sort of chisel away at one's confidence.

I've spent lots of money on different treatments for different ailments, all of which can be traced back to food allergies, and gluten/corn specifically. If only I'd known at the time. But I didn't and kept searching and trying different things. Some worked. Most didn't have any effect and that was even more confusing.

Sounds like your husband is on board and supportive. Why not just give yourself permission take a few months off of trying to figure things out, go gluten-free and enjoy feeling better without tryingn to second-guess anything. The gluten-free diet is healthy and cannot harm you.

[Matilda]

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[Guest adamssa]

Hi,

If you're feeling better, I wouldn't start eating gluten again. Just my opinion, but knowing how long recovery can take, I say your own diagnosis is the one to trust. I actually diagonosed myself. I eventually had it confirmed by a blood test which I asked for, but I did have to ask for it. I completely agree about doctors. I feel that they stimulate the economy, but otherwise do little good. Everything I've found that's helped me has come as result of my own research. You don't need an official diagnosis for it to be legitimate.

Best,

Sara

[Nancym]

I'm a little luke warm on the challenge idea. Some people have huge enormous reactions, some won't react at all after being gluten free. If you don't react you might get the idea you've misdiagnosed yourself despite the fact you've had your symptoms resolve on the diet. But actually you've healed enough and you're not one of those to get terribly sick immediately. But if you keep it up, you'll spiral down again.

Take me for instance. I have had awful IBS for years and years, a couple of autoimmune diseases, brain fog, just generally feeling bad. I tried gluten-free and it cured the IBS, the autoimmune diseases have improved vastly, brain fog lifted. Tons of positive changes. I was gluten-free for 1.5 years then just recently decided to have some wheat to see what happens. Nothing. Now I'm quite convinced that gluten is evil but if I hadn't done all the research I've been doing over the last 18 months, I might think I had misdiagnosed myself, gone back to eating wheat and had some nasty relapses eventually of my autoimmune diseases and IBS.

Anyway, I have been feeling kind of run down all week maybe that was my reaction. But it wasn't anything like I thought it would be.

[spunky]

Thanks for all the replies!

We were on vacation during the holidays, so I didn't want to risk making myself sick with a challenge.

After that, I didn't want to risk making myself sick because I had to come back to work.

With so much fear of challenging, I think, for now, the best bet for me is to sit tight, keep on eating gluten free, and enjoy feeling healthy and not wondering where the nearest restroom is...I think maybe that's answer enough for me right now.

One more month, and I will have been gluten free for ONE YEAR! Thinking back on how I felt this time last year: pooping anywhere between 5 and 15 times per day--sometimes not even making it to the restroom, lots of painful gas, loud rumblings and spasms in my gut, acid reflux, extreme hunger, muscle aches.

Today, 11 months gluten free: poop only once or twice per day (sometimes I even have trouble pooping (ouch!)...that's a new one on me!!!), no acid reflux, no noise from stomach, no pain, sometimes a little gas, but not painful and lots of days no gas, muslces feel good, and I feel I can breathe better and don't have to aways go around clearing my throat, although I never considered those two things as health problems before, but seeing improvement now.

Now I can't get sleep and sometimes it's kind of hard to poop. Other than those two things, I'm feeling pretty good. I'm hoping these are just temporary changes that go with healing, since they're both new ones for me. My stomach and intestines seem very quiet and smooth-operating, these days! After thinking about all of this, I decided the gluten free year I have just gone through is definitely NOT worth repeating. Being in my mid-50's, the ups and downs of symptoms, confusion and general paranoia about eating (that's much better now too!) made 2006 seem like one tough year to get through! I guess it's kind of like, I don't have to purposely hit myself in the thumb with a hammer to know that'll cause bruising: I guess for now I'm feeling about the same way with the gluten challenge. I don't know what made me think any differently before.