"hello" From A Self-diagnosed Celiac/gluten Intolerant

[TownieHeather]

Just thought I'd say hello for the first time - I've been reading this site fairly religiously for about 2 months now since I finally figured out that I'm gluten-intolerant. And before I go any further I especially want to thank everyone who maintains/runs/and posts on this site. It was this amazing searchable forum which pretty much single-handedly allowed me to see that virtually EVERY health problem that I've encountered (even ones that I hadn't identified as health problems) could be tied to celiac disease/gluten intolerance.

And of course it's the searchable forum which allows me to fairly easily find out all the invaluable info on what's gluten-free and what's not.

So HUGE THANKS

That being said, I'm going to post my own story, since I've found it so helpful and comforting to read the stories of others, and as a way for myself to vent (I'm afraid my friends family haven't been entirely helpful to that end).

------------------------------------------------------------------------------------------------------------------

My problems became obvious in July 2008. Over a period of one or two weeks I had increasing digestive problems to the point where I was experiencing extreme indigestion after nearly every meal. For about 2 hours after eating I was super tired, sluggish, and bloated if not in outright discomfort. At the time I was working as a secretarial temp in Burbank in a small tech office where my officemates would usually be working around the building in the afternoon (so I would have periods of having the office to myself). On one day I had decided to have a big salad and grapes for lunch and as soon as my colleagues were gone I promptly curled up in a ball under my desk, that's how bad the pain was. It felt like my allergy to avocado (immensely distended stomach to the point of tears), but there was no way that I had eaten any. Tums didn't help, only time. That was about the worst I remember things being. I couldn't do anything - not even think.

At the time I was also 24 years old, only 1 year out of college and on no certain career track. My mother - my major source of support in case of emergency - was back in PA, and I had no boyfriend and few friends (it's hard to get into a social scene in LA). I had no health insurance, and to be honest, it's almost always been evident to me that our healthcare system in the US is good at the extreme and obvious stuff - like heart disease or diabetes - and totally crappy at the "little" stuff like common diseases and ailments. Case in point: in 2006 I was having seemingly random stomach pain after eating. I went to see a university doctor who after a few questions insisted on a stomach ultrasound. After finding nothing (and an expensive bill) I figured it out on my own - avocado allergy. This would have been easily diagnosed with one question for me: have you been eating anything out of the ordinary lately?

Anyway, a very trusted friend recommended me to an alternative medicine specialist whom she felt was "really kind of a miracle worker." He was a kinesiologoist who was also highly knowledgable in chiropracty and different aspects of chinese medicine and ayurveda, etc. In one session he diagnosed me as having an illeoceacal valve disfunction, a parasite, and a little bit of a candida overgrowth. So I was given some supplements and put on the illeoceacal valve diet for 2 weeks (no alcohol, caffiene, spices, chocolate, whole grains, uncooked vegetables or fruits - low-fiber encouraged). It took 3 weeks, but it worked and I even realized other health problems that I had been having after they went away - like frequent urination, lower back pain, problems sleeping the whole night, bags under the eyes, etc.

But, sadly, shortly after I went off the diet symptoms would always come back. So, after I was more financially stable, I worked with him for 4 straight months from December through March. I stayed on the diet longer but still wasn't healing and it wasn't working as well as before. I ammended the diet based on any number of paranoias - I thought maybe a peanut allergy or vegetables that I hadn't cooked well enough, sensitivity to onions - it was so impossible and unpredictable to tell what was irritaing my system!

Finally, in Febrary I hit my lowest point. My trusted friend always said she thought she would be healthiest if she ate "70% green vegetables, 20% protein and 10% 'other stuff'". So at her recommendation I ate nothing, virtually nothing, but tons of green beans, broccoli, and brussel sprouts accompanied by some chicken or boiled eggs, and a little sweet potato every day for 3 weeks. At first it helped - but after 5-7 days I had developed the worst bloating and gas - literally every 5-15 minutes I let loose a huge amount of gas and was bloated from the minute I started eating until my digestive system stopped. I was majorly fatigued (could barely make it through my dinky 40 hr/week shift job) and stopped what few activities I had managed to do previously. I didn't really see anyone, my poop was green, and something was obviously very wrong. After months of very hard work and next to no understanding from my family (they actually made it more difficult and sometimes made me feel like it was all in my head), I truely felt like I was going to die. And I was only freaking 24. And alone.

In short, after this point, I re-strengthened my religious practices and actually started finding a group of friends in a local religious community (which helped a lot psychologically and emotionally, though I rarely mentioned my troubles). I threw the diet to the wind and ate some rice - and my gas and bloating were cut nearly in half. (as it would turn out, all those greens are just as high in fiber after they're cooked - so my body was more than likely having a very hard time processing all that fiber which resulted in the ridiculous gas). And since I had recently acquired health insurance, I decided to get my money's worth.

I went to see the dentist first, thinking that this would be the easiest thing to deal with. After all, I have always brushed and flossed every night, like clock work. Wrong. Turns out, I have periodontal disease and bruxism (grinding of the teeth).

I also went straight to a gastroenterologist. Dismissing all of my alternative medicine experiences and supplements as "proven to do absolutely nothing" (as opposed to at least checking to make sure I wasn't taking anything that might be harming me), he tested my blood for celiac disease and crohns (I think?) and had me go in for an x-ray of my upper GI tract. The celiac test is negative (which I now wonder about since I had unintentionally not been eating much in the way of gluten and had in fact gone without it for almost a month. I think I had a bowl of mac and cheese sometime before the appointment...), and the x-ray turns out to be normal (and it was cool to see but MAN that stuff they make you drink will mess you up BIG TIME).

By April I finally was able to get myself to see a "normal" doctor to see what one had to say - and at this point I had also developed a persistent brain fog and near-dizziness when standing. He diagnosed me as having subclinical hypothyroidism, and sent me to a gyno since I also hadn't had my period since Feb. (and to my knowledge I've never missed a period in my life).

So April - August I totally quit all of the alternative ideas that I had previously been following and just do whatever "normal" doctors told me. Strangely, after being on such a restrictive diet for so long, the first thing I wanted wasn't what I had fantasized about (fresh fruit and veggies, chocolate, thai food, etc). I gorged on whole wheat crackers and ceral and granola.

BUT, of course, not much got better, and infact got a little worse. The thyroid medication had helped a little, but my GP didn't have any advice outside of it - "just wait for it to work" was his idea after even several months of no improvement. And every few weeks when I went to see my gyno he was diagnosing me with either a vaginal infection or a urinary infection. My frequent urination was getting worse with each set of antibiotics (though I avoided sugar as much as I could and took probiotics to recover). By the third prescription of antibiotics I was scared to take any more. Further, Ramadan was coming up, and I really wanted to be able to fast (no food or water from sunrise to sunset), and you're not supposed to if you are ill, etc.

So I stopped the pill. And I didn't take the antibiotics. And I went back to my kinesiologist who gave me some Urinary Tract pills which were amazingly good at keeping the virus from sticking to the walls of the bladder (the same kind of substance which can be found in cranberries, etc., only I suspect more concentrated). And I went back on the crazy diet for few weeks and felt a lot better, even if only temporarily.

It was during this time that a friend of my family was remarking about how "we're often most addicted to the substances that are worst for us." For him it was chocolate. And when I thought about it, really the only thing that I was "addicted" to, was grain. Particularly whole grain. So in late July/early August I figured out, by way of talking with my kindesiologist and espcially reading on this site, that all of this really may have come from gluten intolerance.

So I also kept myself from any gluten-containing products on that diet, and surprisingly managed to stay away from gluten for the first half of Ramadan as well (mosques love chicken and rice, thank god).

Fasting was exceedingly difficult - in addition to dehydration from the heat and general hunger I was exceedingly hungry all night and exceptionally moody. I had headaches for the first time in my life and my bruxism was noticable worse. I was so irritable I actually developed road rage and almost constant anxiety - very new for me. I now understand that this was probably "gluten withdrawal" at it's worst.

But, after about a month of course my "gluten-testing" opportunity presented itself: an iftar (fast-breaking meal) potluck with every delectable dessert you can imagine. So I indulged. And was unable to stop eating the whole night. The next morning, after not much sleep, I awoke with very red, swollen eyes and felt feverish though I had no detectable fever. Then came the diahrrhea.

Yup. Definitely gluten intolerant.

More surprising to me was that a day or two later I had a couple sort of "depressive waves" where I found myself depressed even though I knew I had no reason to be. My body was literally causing my mind to want to think of sad things, even though I could think of nothing sad at the time. It was strange. And I cried for no reason. And then I realized that I may have been developing or have had this condition for a very long time - possibly since I was a teenager. The more I look at what I know realize could have been cause by the disease, the more I think that. And it's amazing.

So now I go through periods of being thankful for this, and being totally frustrated and nearly hopeless that I'll ever fully recover. Since Ramadan ended in late September I've lost my job (I saw it coming) and returned home to central Pennsylvania (Happy Valley, no less - thought don't ask me how people can be happy at all with so little sun...). I thought that I could recover here but am wondering now how possible that might really be. I'm living with my mother and brother both cast quite a bit of crumbs around. I know I need to rearrange the kitchen, but I don't want to impose such bothersome, pain in the ass rules on them. My mother has already complained about how "annoying this is going to be" just to have to prepare different foods for me at holidays, etc.

And of course, when I'm having a depressive wave (not helped but the utter lack of sun- did I mention that?) I worry about how much of a life I can really live like this. Who would want to marry someone as special needs as me? How much am I going to have to suffer just because I don't want to be a burden on others and insistent upon uber-cleanliness? How can I ever travel the world like I want to when something as basic as food is such an issue? And if some of these other health issues don't go away, how can I possibly have a career/be independent if I can't think or I'm always tired?

I feel like I should have more hope of healing because I'm so young - so I read stories on here a lot and hope that's the case. But it's hard.

And then of course I always wonder about some of the theories that I've come across - like the validity of illeoceacal valve malfunction, candida overgrowth, etc. I guess it's only naturally to always be looking for a way to cure your ills, and when you have celiac disease, well, you have plenty to address.

I also wonder about my genes and whether I would even "technically qualify" for celiac disease. But, thank you crappy healthcare, it might make the most sense to never undergo the official testing. Afterall, the treatment is the same whether I'm GI or have celiac disease - and if I really want to ensure that I can even GET healthcare, it's far better not to be identified (as sad as that is). Of course it would be easier to convince my relatives of the pressing nature of the intolerance if it were official - but I guess I'll always have to live with being "a little different."

So there it is, my gastrointestinal journey. And on it goes...

[luvthelake21]

Just wanted to say hello and welcome to the forum. As you know this is the best website to teach yourself on how to live gluten free. I have reading here for almost three years and have learned so much, I still read here just about every day and still learn more. I hope you get feeling better soon.

[homemaker]

Welcome to the forum and thank you for sharing your story. I think perhaps all of us have our stories to tell, we walk a hard road with Celiac Disease and Gluten Sensitivities so very under diagnosed. You are a very courageous human being like all of us who struggle....

I too, do not have a "gold standard" diagnosis...sometimes I struggle with that too...but what I have discovered is that when I boil it all down, it all has to do with having confidence in my what my OWN BODY is trying to tell me. Irregardless of what some "medical test" might prove or not prove. I found it hard to let go of thinking the "Doctors know best" sort of belief. If I am grateful of anything, I am grateful that my Gluten Sensitivity has taught me to respect my body more, respect what goes into it, and most importantly develop confidence in my own body messages. I have learned that Physicians are vital to our health but I am also learning that I own my body, I make choices in regard to it and just because I go to a physician does not mean I give up my power of choice...and if any Doctor dismisses my choice to be Gluten Free he won't be my Doctor for long....I choose to be gluten free for life because my body demands it.