Should I Do A Self-diagnosis Experiment?

[fnord]

Hi - great forum. After four years of experiencing symptoms described throughout this forum, they have intensified in the past month to the point where I should probably figure out what's wrong. I'd really appreciate any feedback before I begin a gluten-free trial so I don't waste my time making such a change in diet.

So, around 4 years ago I started having "bathroom issues"; lots of tummy rumbling, gas, distended abdomen, and very loose stools. There had been no changes in my diet (I'm vegan and had been so for a couple years before this started). Then I started reacting badly to beer - bloating and gas - which I just attributed to the carbonation. I've had lifelong depression, so periods of feeling low were nothing new to me, but I'd say in the past 2 years the depression periods have only gotten worse.

Now, fast forward to the past few months. The tummy rumbling and loose stools are now every day occurrences. I thought beer was the culprit so I eliminated beer for a week and saw a slight improvement, but not totally. As a beer lover and homebrewer, the thought of Celiac is a major blow to me. My depression has exacerbated to an almost perpetual feeling of self-hatred and disgust with everyone and everything around me. I act nice on the outside, but inside I'm actually seething. My self esteem is at an all time low. I started exercising at a gym 2-3 times a week, but it does nothing for my mood and I lose weight too easily (I'm already thin, except for the bloated tummy which looks totally out of place). Now what has concerned me in the past month or so is the extreme lethargy. Having trouble getting up in the morning, I get to work and I just feel like taking a nap, get home from work and just fall asleep for a few hours. Then I find myself wide awake until 3am and it's really messing up my schedule. I've lost almost all motivation to do just about anything now and I waste tremendous amounts of time.

As a vegan, I consider my diet to be pretty healthy and I make nearly all my food from scratch. It's rare that I eat something processed that comes in a box. Obviously I eat a lot of wheat products in the form of bread, tortillas, and the aforementioned love for beer. Three days ago I had a bowl of eggless flour noodles and I swear it just sat in my tummy for 2 full days - terribly bloated. I smoke cigarettes off and on, but on average about 5 a day. That's easy enough to stop if it would help the way I feel. I'm 34 and have never had any medical issues or sensitivity to much of anything. I've developed the dark circles under the eyes and I basically look pasty and unhealthy.

Would I be wise to try a gluten free trial? How long?

I'll be reading through the forum for more info, but from what I've read I think it's kind of obvious a gluten free trial couldn't hurt me.

[Gutbomb]

One thing to mention, if you want to get tested for it you need to be eating gluten. So if you are person who needs an "official" diagnosis, like me, then you might want to wait and get blood tests done first.

I am pretty much assuming that mine are going to come back negative as all my tests do. Apparently there is nothing medically wrong with me . So I went gluten free yesterday.

Good Luck.

[Rachel--24]

Would I be wise to try a gluten free trial? How long?

I'll be reading through the forum for more info, but from what I've read I think it's kind of obvious a gluten free trial couldn't hurt me.

Is there any reason that you dont want to be tested?

Some people have Celiac Disease....and some people are intolerant to gluten due to other health issues or an inability to properly digest it.

If you start the diet without having any testing done you may find yourself confused as to what the problem is later on (if symptoms dont resolve).

I would highly recommend having all testing out of the way prior to making diet changes. Make sure that ALL of the proper tests are ordered and that nothing is missed if you want to have the clearest picture possible.

Even if tests are negative you should still try the diet.

[fnord]

Is there any reason that you dont want to be tested?

Yes. I don't have health insurance and I have a hard time getting involved with the Western medicine runaround except in the event of an life-threatening emergency. I figured I'd start with the most basic step by simply eliminating what I think is causing the issues. It certainly won't hurt me, and if the results are obvious then gluten-free is the solution. If nothing changes, then it's on to Plan B, whatever that may be.

[par18]

Yes. I don't have health insurance and I have a hard time getting involved with the Western medicine runaround except in the event of an life-threatening emergency. I figured I'd start with the most basic step by simply eliminating what I think is causing the issues. It certainly won't hurt me, and if the results are obvious then gluten-free is the solution. If nothing changes, then it's on to Plan B, whatever that may be.

This has been my position exactly since I was diagnosed over 3 years ago. If a person does the gluten-free diet correctly only a couple of things will happen and none will be bad. One it will work, two it will not (and then it is on to your plan B without money spent on testing ) or three it will help to the extent that if something else is wrong it may allow this to become more apparent. The worst thing someone can do is to go about the diet in a less than 100% fashion (lack of knowledge or willpower) and then it will can make diagnosing anything almost impossible. Take it one step at a time. If gluten is only one of multiple issues then control that portion and move on the the next step. If it appears after being on the diet that it "is" the culprit then decide whether or not to go back to eating it and trying to get a diagnosis. Like I have said before then you know you are traveling in the right direction. This way "you" will control the process without putting it into the hands of the health care profession whose track record on diagnosing this condition (about 3%) leaves something to be desired.

Tom

[ShayFL]

Also, we all heal at varying speeds. Some get immediate relief while others have to keep at it 100% for a year or more. Without tests, you will have to commit to gluten-free living for at least a year.

[Jestgar]

Yes. I don't have health insurance and I have a hard time getting involved with the Western medicine runaround except in the event of an life-threatening emergency. I figured I'd start with the most basic step by simply eliminating what I think is causing the issues. It certainly won't hurt me, and if the results are obvious then gluten-free is the solution. If nothing changes, then it's on to Plan B, whatever that may be.

Bag the testing. Change your diet. I frequently skip testing if the answer involves a) drugs I don't want to add to my body, or something I can fix with lifestyle change. (Not including anything potentially life threatening.)

Although I was (technically) diagnosed by a doctor, it was my boss, and he recognized the symptoms because his dad has Celiac. I was not diagnosed by any lab tests (unless you can count improvement of all my lab values over the last two years). I saw no point...

[April in KC]

I have to admit that I did a 48-hour "self-test" when I first suspected gluten sensitivity. Not everyone would notice immediate improvement, but for me the 48 hours were very dramatic - great energy I had been missing for several years. I then went back on gluten and got tested within a week, and was positive for some of the antibodies. It really didn't matter at that point...whether I had tested neg or pos, I would have quit gluten cold on the basis of how I felt while gluten-free.

The fact that you stay up late at night is suspicious for Celiac. I used to have terrible trouble napping and then staying up late. The daytime gluten-filled meals made me tired, and if I stayed up late enough, I would usually catch a "second wind" that was probably just the effect of the gluten wearing off my system. I was one who suffered from major fatigue issues.

If you are strong willed enough to live gluten-free without a doctor's diagnosis, then a self-test could be right for you. If you will need a positive result in your dark, pizza and beer craving moments, then stay on gluten and get a test. Or do a mini test only---just a couple of days.

BTW, I'll bet you could learn to brew gluten-free beer at home. There is a fantastic gluten-free beer called Bard's Tale that is pretty dark, and there is a mainstream gluten-free beer called Redbridge. Both are sorghum based.

[ohsotired]

The fact that you stay up late at night is suspicious for Celiac. I used to have terrible trouble napping and then staying up late. The daytime gluten-filled meals made me tired, and if I stayed up late enough, I would usually catch a "second wind" that was probably just the effect of the gluten wearing off my system. I was one who suffered from major fatigue issues.

I just wanted to comment that what April said fits me to a T, and thus far I've tested 'negative' for Celiac (my dr didn't run all the blood tests )

I've been like this since at least high school........feeling really tired in the afternoons, then catching that second wind between 8-10pm, often staying up until 1am or later, and being more productive than I had been all day.

Then of course, having major problems getting up in the mornings.

Four days on a gluten free diet as a mini-trial, and I felt awesome. Better than I have in years.

So I'll say what others have said. If an actual dx from a medical professional (something on paper) is or will ever be of importance to you, then at least get the blood tests done. And make sure it's ALL the blood tests.

If feeling better is more important to you than a piece of paper that shows a diagnosis (which for a lot of people is pretty elusive anyway) then go on the gluten-free diet, and keep a journal of what you eat and how you feel.

Whatever you decide to do, I wish you much luck and improved health!

[Nancym]

Lots of people used dietary trials to figure out they were gluten intolerant. I think it is perfectly valid. Gluten free might just help your depression too!

Oh yes, good news for you, there is gluten free beer! And I'm sure there are people out there home brewing gluten free beer. Just google for it!

[veggienft]

By the way .......if you should decide to try brewing your own gluten-free beer, it is imperative that you get it tested by as many people as possible.