Also Not "officially" Diagnosed

[ladyjane]

Hi, I am also new to the forum. I have been toying with a gluten free diet for the past 3 years until I have finally decided that remaining gluten free does make a major difference for me. My symptoms were similar to the ones recently described (bloating, gas, diarrhea etc), with the addition of gerd. I had gotten to the point that I felt like I couldn't eat anything without being miserable. I kept blaming it on my hiatal hernia. I was sleeping sitting up in the recliner. I have tried all the classic pills for gerd with little improvement. Then I slowly started noticing a link between eating gravies, and pasta with an increase in the misery. I was eating sandwiches nearly everyday, so I was never without gluten. I was so uncomfortable that I tried totally fasting for a day and it made me feel so much better that I really started paying attention to my symptoms and what I ate. I decided to try a gluten free diet and I haven't taken another pill for the gerd. But, when I doubted my self diagnosis and returned to eating gluten, here came the gerd again. I told my doctor and he ordered a blood test, but I had been gluten free for 4 months at that time, so it came back negative. So, now the sandwiches are gone. I still haven't been able to find a good gluten free bread. I am fortunate that the grocery store that I patronize carries many gluten free items. Recently I found the new gluten free bisquick on their shelf. I haven't tried it yet. Initially, I was frustrated with all the foods that I could not have if I was truly celiac, but slowly my attitude is changing and I am starting to experiment with gluten free versions of eggplant parmisian and other favorites. As, I look back over my life I see that this has probably been a lifelong problem. When I was in elementary school I got stomach aches when I ate boxed cereal for breakfast, so I solved it by not eating breakfast. In my early twenties I became a vegetarian and gluten is a meat replacement for many vegetarians. I had a hard time digesting it. There were some kinds that I couldn't eat at all. I guess the gerd was my body's way of saying the damage was getting pretty advanced. So, now I am eating gluten free and have no need for all the pills, and no more sleeping in the recliner. Does it sound like I have the right self diagnosis?

[jackay]

It sounds to me like you diagnosed yourself accurately. The diet really isn't a problem once you get use to it. We just eat healthier than most people.

[Looking for answers]

I blamed my hiatal hernia for years too! Good thing we both began thinking outside the box.

I also became a vegetarian, which was a huge mistake. That's when my health took the worse dive of my life.

It looks like we've walked similar paths. Welcome to the board!

[VernRuth]

I am turning 60 and for 20 years I have received the following diagnosis:

Hiatal Hernia,IBS,LPR,GERD,and Diverticulitis. In addition, the joints my hands, especially my thumb, hurt so bad I couldn't ope a jar of mayonnaise. I even went to a specialist who was going to operate to fix my thumb. Further, I had scaly psoriasis all over my arms, and a horrible small prickly rash on my back that itched so bad I thought I would go insane. Also, I had sores in my mouth, and a pain in the back of my tongue for 18 months. Finally, I am so lactose intolerant that I can't even look at anything that is dairy and have been plagued with diarrhea for years.

I have lost faith in "specialists" and swore I would rather die then put myself through one more test. By accident. around 4 months ago, I overheard my daughter talking about her new "rave" diet to lose weight. It seems that one of her girl friends had joint problems, diarrhea, and skin issues and had went on a gluten free diet and lost a bunch of weight. I listened didn't say anything then tried the gluten free to see if it would help my symptoms.

So the psoriasis went away, the rash went away, the joint issue went away, the sore tongue is mostly gone, and so, for the most part was the diarrhea. I tried, a couple times going back to gluten to see if I was talking myself into believing my own BS. However,almost immediately, my arms would start to break out. So, I went back to the gluten free diet (God what a pain) and everything seems OK. Except for a couple of issues.

Now it seems,as time has passed and I have eliminated more and more gluten from my diet, that now, even the slightest bit of gluten causes me to be bloated and a couple of times I have had these horrible attacks, its been 40 days since the last one, where I am doubled up with pain under my left rib cage which lasts for around 15 minutes.

So here I am, I have not "officially" been diagnosed and have the opinion that most doctors are quacks. I am kind of lost but I am curious to find out if 3 - 4 months I would still be having some symptoms and as I eliminate more and more gluten from my diet, that I have become increasingly more sensitive to the amount of gluten it takes to set off a reation. My latest revelation, soy sauce contains wheat. Now why anyone would name it soy sauce instead of wheat sauce is beyond me. Is there any sanity left anywhere? Mine seems to be full of lost hope and helplessness as I deal with something I only "suspect" is the root cause of all my other issues. Oh, I forgot one other issue, I have this painful bladder syndrome that seems to be related.

Lost and ready to say to hell with it.

VernRuth

[Skylark]

VernRuth, getting more sensitive to gluten is totally normal for us. Trust your body - getting rid of that many symptoms definitely means you're gluten-sensitive. After a lifetime of gluten sensitivity it can take more than 3-4 months to feel well, especially if you're making mistakes like eating normal soy sauce. (And yeah, the name makes no sense.) Good luck.

I'm also in the "not officially diagnosed" club. Gluten is poison for me, pure and simple. I don't need a label to stay away from the stuff.