My Gluten Intolerance Status...

[JerryK]

So I haven't posted in a while, cause I don't quite know what to say.

Basically most of the hard questions have been answered for me...I'm not Celiac

but I am gluten intolerant. I've been gluten-free(ok I did have one cookie) for 4 weeks now

and I've had the runs ONE time and it was on the cruise ship, where I could've easily

ate gluten unknowlingly. So for the most part, my gastro problems are gone....

The problem...I'm bored...I don't have any symptoms...it would be so easy to backslide into

my glutenous habits...simply because I feel so well.

Be that as it may...if you don't see me around here very often...it's because most of my questions have

been answered. Not being frankly Celiac, I don't really have that much to add..

I do want to thank all those who've helped me over the last several months..

Take Care,

Jerry

[Generic]

On another note, looking at your avatar makes me want to go wheeling. Ergh, my jeep is torn apart. LOL. And I don't feel like take the buggy out in the snow right now (fighting a cold). Oh how I long for warm weather.

[Jestgar]

The problem...I'm bored...I don't have any symptoms...i

Consider yourself slapped upside the head!

Waddyamean you're tired of being well?????

[Lisa]

Jerry

You BETTER stick around! You're family. Who else would entertain us?

Lisa

[chocolatelover]

Jerry, I personally would miss you if you were not around. I don't write a lot, but I lurk often. I have gotten great joy out of the posts you have written. Just because you haven't been diagnosed "celiac" doesn't mean you don't have issues with gluten, thoughts about gluten, and opinions about gluten. You are clearly extremely sensitive to gluten and will no doubt have a lifelong battle with ingesting the stuff. You also have a wealth of information that you can use to help others who are beginning their battles with gluten. On one of my other threads I asked people who are not "officially" celiac what they tell people when they go out, etc., There are some interesting responses--check it out.

So please stick around, will ya?

CL

[jerseyangel]

Jerry,

I think your experience with this whole thing would be very valuable to others who are going through something similar.

Your story of gluten intolerance is not the least bit boring--actually quite the opposite. I think you underestimate how sharing your struggles with this have impacted the many others who have followed your story.

I hope you continue to stick around, or at least pop in from time to time. But most of all, I'm glad you're feeling so much better

[Jestgar]

I agree with Patti. You're one of those people that manages to put the emotion you're feeling into your words. Your posts give a very clear picture of what you're experiencing both in your head and physically.

If you decide not to stick around, at least consider writing short stories as a second job.

[JerryK]

Thanks guys,

I'll try to make it a point to stick around. The problem with feeling well is you decide you are well and

that it'll be o.k. to suck down a handfull of those Girl Scout cookies....(It's o.k. right, I'm not really Celiac). Then when you do that and have the runs for two days...you decide hmmmmm....I guess

I wasn't really cured after all

Because of my non-celiac status, I will have a life long battle trying to avoid those tempting things like

Girl Scout Cookies, and my desire to not have the runs and feel miserable.

(That's the amazing part, call me non-celiac if you like, but just a couple cookies sends me to the toliet for the next two days, perhaps their diagnostic criteria is a bit narrow...)

It's important for me to stay around here, if only to remind myself daily what will happen if I fall of the wagon.

Jer

[happygirl]

But, if the treatment is the same, you are living the same life as 'diagnosed Celiacs'---so you fall among a good amount of people on this board who aren't official or don't have "true" Celiac. You are no less important! The forum is called glutenfreeforum.com, not celiacsonly.com

Plus, and something that I think is important to remember---for all of us----is the pay it forward approach to this board. Many people on here "get it" and "know" Celiac....but stick around to help the new people. Where would you be if you hadn't been helped by so many great people here? This board is only as strong as its members.

Laura

[JerryK]

Plus, and something that I think is important to remember---for all of us----is the pay it forward approach to this board. Many people on here "get it" and "know" Celiac....but stick around to help the new people. Where would you be if you hadn't been helped by so many great people here? This board is only as strong as its members.

Good point, I guess it isn't all about me...

[CMCM]

Hey Jerry....Sorry, but I really do think you're making a mistake if you choose to believe because you are not officially one of that 1 to 3% who are celiac, that having "only" gluten sensitivity excludes you from the need to worry about gluten. Absolutely NOT so. I have read my brains out on this, and what is not getting through to so many doctors and so many of those who have "only" gluten sensitivity is this: REACTIONS TO EATING GLUTEN INCLUDE ORGAN AND TISSUE DAMAGE!!! You don't have to be celiac for this to happen!!! One weird thing is that for many people, the body can develop a kind of tolerance to gluten, meaning that you can actually eat it a lot without suffering unduly. I've struggled with this myself. I've been sick from gluten, then been free of it, felt better and therefore thought "why not have some here and there, I can get away with just a little here and there", and then it would get out of hand again, I'd been progressively worse and worse, then I'd stop eating it again.

The facts are that gluten does damage in many people. Perhaps it even does some degree of damage to everyone who eats it, but some are affected less than others. Perhaps the damage will not be readily apparent until something ELSE gets affected. Your pancreas. Your gallbladder. Arthritis. Perhaps prostate cancer. Diabetes. Stomach or intestinal lymphomas. Or perhaps you'll never be affected visibly. My mom was diagnosed with celiac disease in 1969 at a point where she had nearly starved to death from malabsorption. She gets violently ill from gluten and therefore has strong motivation to avoid it at all costs. She's 86 today, very healthy, very mentally young, no real heath issues considering her age. We just learned last month that she has 2 celiac genes, which means she got one from her mother. And did my grandmother actually have celiac disease? Probably not, she lived until 99!!!! BUT.....she had a lot of sporadic and unexplained illness, my mom now realizes, and she had fairly bad arthritis for maybe the last 30 years of her life. My mom, on the other hand, doesn't have arthritis. In any case, my grandmother lived until 99 but maybe the quality of her life would have been far better had she not eaten gluten....perhaps she would not have had the arthritis or the osteoporosis that caused a minor fall to break her hip.

Since my mom has 2 celiac genes, this means each of her 4 children has one celiac gene. I have symptoms but still don't really know if I've ever had active celiac disease. Since my malabsorption test was very low, I think possibly not. So perhaps I'm only gluten sensitive at this time and probably have been for all my life thus far. I don't think celiac has ever been triggered. But I HAVE had a wide variety of things plague me health wise: migraines, joint aches, endless digestive issues since childhood, osteopenia. My two brothers claim they have no symptoms that they think could be connected to celiac/gluten. BUT.....both brothers were diagnosed with prostate cancer at relatively young ages...53 and 54. And my father gave me a gluten sensitivity gene so he had at least that....and he got prostate cancer at 60, had his gallbladder out, and got bladder cancer. He died in 1989 at the age of 73. So who is to say, maybe gluten did him him unknowingly...and the point is, he did not have celiac disease. Again in retrospect, my mom thinks he was affected: besides the cancers, he had continual sinus issues, a fair number of digestive things, heartburn, high blood pressure. Was it all from gluten, which then affected his "weakest links"?

I just think it's obvious that gluten can make you sick, gluten can damage organs and tissues, gluten is connected with a lot of other things. As one doctor said, your body has a "weakest link" somewhere, and if you "pull the chain" long enough, gluten may cause that weakest link to succumb to disease of some sort. There's a lot of information out there, a lot of studies, but it's not all organized or mainstream yet. Which is too bad for us, because we are encouraged to look for the "worst case scenario" (celiac disease) as the ONLY thing we worry about, when in reality, it's probably the 80% of us who may have gluten sensitivity who ought to worry and be careful!

I have come to believe that eating gluten is a game of roulette with your future health and possibly your longevity. I don't believe you have to be diagnosed with celiac disease, you don't have to have a celiac gene, and sometimes you don't have to even be very sick for repercussions to occur inside your body.

[JerryK]

Hey Jerry....Sorry, but I really do think you're making a mistake if you choose to believe because you are not officially one of that 1 to 3% who are celiac, that having "only" gluten sensitivity excludes you from the need to worry about gluten.

I understand and you make some great points. My point is not that I don't understand the issues, it's that when you feel well, you begin to have doubts....you begin to forget how badly you felt..etc..

Just like having a toothache...you probably don't think much about that tooth, until it hurts...when it hurts it really gets your attention.

That is where this forum is valuable for me, as a reminder........j

[Nancym]

I totally agree with Carole (what a great spelling of the name!). I've had (have actually) two nasty autoimmune diseases and a lot of years of misery. You've had a big battle with depression. I'm only 48!

Sometimes you just gotta ask yourself... is it reasonable to let a food be more valuable than your health and happiness and mental stability?