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    Do you have questions about celiac disease or the gluten-free diet?

SteveT

Questions About My Condition

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Greetings

I'm brand new to this forum, and the reason that I'm here is because of a web search I did to try to get to the root of my I problem. I'll try not to get too 'gory' about the details, but to fully explain things, I'm going to describe things that make me feel uncomfortable doing so in an open forum. Nonetheless, here goes....

I'm male, 35, about 6' 1'', about 190 lbs, and fairly normal/healthy. I've a bit of 'flab' that seems to happen to many young dads, but otherwise, in decent shape. My lower back is basically destroyed for a person of my age, but I deal with it.

Starting last August/September, I began getting very unconfortable in the lower GI region, so bad that I had problems sleeping at night because of dull (and some sharp) pains originating in the lower colon regions, which seemed to become inflamed and block movement of my bowels. I'd get associated low back pain with these apparent 'flare-ups'. I'd become basically useless because of the discomfort and pre-occupation of being so constipated, so often. In short, a living hell. I honestly thought that I was dying.

In the mornings, until I relieved myself of #1 (pee), I really couldn't do #2 (poo), apparently because there was no room for both, and even when #2 did happen, it was thin, soft, labored and rarely felt relieved afterward. Every so often, I'd pass a very hard stool, usually quite wrinkled with a bit a mucous. Red meat seemed exptionally hard to pass and would seem to add to me getting 'bunged up', as it seemed like I wasn't digesting this as easily as I used to. I finally went to my doctor (who never gives me the time to explain the way that I am doing here), who told me to take mucillium (spelling?). I took the mucillium, which did result in somewhat more 'normal' stool movement, but my internal pains, cramps, brainfog, gurgles, gasblocks, etc. persisted in a somewhat cyclical fashion (about every week or two, I'd slowly get constipated, pass the hard wrinkled stool, feel better for a day or two, then start back into the same cycle again).

Second visit to doctor - she got fed up hearing me (though she gave me only 15 secs. to explain) complain about the same problem, and thankfully (I thought at that time) booked me with the GI specialist I'd hoped she would. Anyone was better than she.

Visit to GI specialist - He also listened very little to me, booked and conducted a colonoscopy (negative for anything), booked and did a barium enema (really good for the lower GI - not), and upon revist to family doctor to hear about those results, this is what she tells me, no kidding either. "You have spastic bowel, aka IBS, you'll have it forever, so therefore you have to take mucillium forever" THAT'S IT - end of appointment, and so off she went onto the next unfortunate patient.

I said the h#$$ with her, and started my own 'investigations'. I spoke to friends, colleagues, some of whom also had problems, and one who suggested a naturalpath specialist. One other friend/co-worker, who has self-diagnosed herself as wheat gluten-intolerant, suggested that I go off wheat products.

During that period from September through to last March, I'd regularly drink beer on weekends, a scotch every night or two, plenty of bread, cookies, pasta, etc... like I've done for most of my life. Well, this is what followed....

I began to take the wheat product free path. Bing-o! Suddenly, I began to get normal bowel movemnts, normal looking stool, of the size/mass that one would expect for an adult male. No more thin, soft poops. The vast majority of my problems are gone, and I rarely get pre-occupied by discomfort caused by frequent constipation.

Here's what I think. Somehow, something was causing my intestinal tract to become inflamed, and when I added the odd red meat (especially less than well done steak) meal, it would compound even further. The inflamation inhibited movement of gas and make things worse. Swelling of my bowels seemed to create blockage of large-mass stool, which eventually dehydrated and wrinkled before finally passing through some event of fortune. I'd privately 'celebrate' when I finally passed these. I thought at the time I had one or more diverticula, but my GI specialist claimed a clean-bill following the scope test.

Anyhow, after I went off wheat products, the hard wrinkled stools stopped, as did the associated constipation/brainfog, gas blockage, feelings of being toxicated by not passing the 'bad stuff. Its stopped compounding my lower back problems. I truly feel like a new person, and am back in the game, so to speak. I've been wheat product-free for about a month. I tried an 'experiment' the other day to see if I could determine if wheat products are the problem. Two days ago, I ate two large 'windmill' ginger cookies make with regular wheat flour. Yesterday I felt slight familiar lower GI discomfort, but not that bad. This a.m., I was awoken by a bit of GI 'gurgle' discomfort. I passed another, shorter-term verson (not as dark/hard) wrinkled stool about the size that would approximate two-cookies worth.

Coincidence? Cause and effect? I don't know. All I know is that it was enough for me to go online and ask around about a condition I recently heard about called Celiac, which I understand to be related to gluten-intolerance or even allergence. I feel like I'm experience a gradual, but certain, healing or recovery process, after an extended period of damage inflicted to my GI tract.

I've almost written off my doctor, and even GI specialist, because the only reason I've gotten better is because of my own 'gut instinct' and action, NOT because of anything the doctors did. This is pathetic to me, because I live in Canada, and we're supposed to have among the best health care systems in the world. I'm losing faith in that system because I think that doctors are overburdened and can't invest the time/thought into each patient as they should.

I'd appreciate any feedback, comments, questions about what I've described. I need to get to the bottom of this, and it looks like Enterolab (to test for celiac and wheat/gluten intolerance/allergence) might be the answer I'm looking for... for now, I'll continue with my wheat-free diet.

regards,

Steve from Canada

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It is amazing to me that so many doc's will not listen to their patients. Find another doctor and don't stop until you find one who will listen to you. I have a philosophy that I also push onto my clients, the bottom line is that you pay your doctor to help you. You are their bread and butter. If you get an arogant one, find another. Don't hesitate to put them in their place. I spent thousands of dollars and a life time with people who didn't care. I finally took charge and demanded treatment. I now know why I have been so very sick. If the gluten free diet works, keep doing it. Do the lab tests too. Good luck to you! Tara

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A lot of us here have had similar experiences with docs. I discovered a sensitivity to wheat by a rotation diet, and cut it out. I was still having problems (because gluten is in more than wheat and gluten is hidden in so many things). I went to docs and told them my problems and sensitivity to wheat, but since I had not eaten much of it in 3 years all my tests came out negative. I used enterolab (www.enterolab.com) and they verified my sensitivities.

Even enterolab says that dietary response is your best proof of a problem with gluten. You could ask your doc specifically to do the celiac testing, which would include a blood test, then a biopsy of the small intestine. But if you feel better being gluten free, you can just stay gluten free, there's no problem with that. The reasons I felt it necessary to be tested were to know what genes I've passed on to my kids, and because I knew I'd be more dilligent if I had a test that said I really had it.

I'm sure a lot of people will post more advice. It's usually quiet around here on the weekend.

Carla

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Hi Steve!

Welcome to the forum! You'll find there's alot of us Canadians on here!

You have certainly had quite a journey. Unfortunately, it is a journey all too familiar to us in the celiac community. <_<

Not that you need any reassurance, but as far as I am concerned, you have found the root of your problem. You are finally on the right track and you should now be able to see the light at the end of the tunnel.

The best thing for you to do now is read, read, read!!!!! There is a ton of info on here to absorb, but as you read more and more, you will probably say more and more "That happens to me!"

Just make sure you eliminate all sources of gluten. Check your vitamins, shampoos, lotions, over the counter medication, etc. No licking envelopes, stamps (the glue can have gluten in it). One example of a mistake I made is I was eating Gas-X Chewable Tablets like candy for the gas I had. Turns out they have gluten in them! Gas-X Sofgels are okay for us though......

As any questions you need to - don't shy away - we've pretty well discussed everything on here! LOL!

Welcome!

Karen

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Guest nini

positive dietary response is a valid diagnostic tool, if you respond positively to a gluten-free diet then obviously it is the source of your issues and you need to be off of it.

Celiac is just ONE piece of the larger puzzle that is gluten intolerance, so even if you don't get an official dx of Celiac, you can still be gluten intolerant. Dr.s are NOT Gods... they are infallible and don't know everything, especially if they don't take the time to listen to their patients.

I am in the "alternative" health care field and I don't have a lot of faith in the medical community to accurately dx this 100% of the time. Sure they find it in the lucky few, but in my daughter's case, I had to take the matter into my own hands after I was completely dismissed by her pediatric GI dr. Who was SUPPOSEDLY an expert on Celiac. He treated me like I was a hypochondriac mother and in her charts even wrote that he did the food allergy screening just to appease the mother... blech.... a food allergy screening WILL NOT find celiac. But she responded MIRACULOUSLY to the diet and now if she gets even the slightest bit of gluten, she has immediate symptoms.

sure there are some good Dr.s out there, but for the most part they have been taught that Celiac is incredibly rare and they will probably NEVER see it in their practice. That is just not true. Celiac isn't rare, it's just underdiagnosed and MIS diagnosed as IBS most of the time.

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Be sure to get your own toaster. The crumbs from regular bread in the family toaster can make you sick. I did not get one for a year as I thought the advice was overkill. It is not. My husband now uses one section of the counter for his sandwich makings and I another. Also be sure that no one double dips into jelly, marg, and any of the condiments. Somedays we go through lots of knives. But, I don't get sick. Good Luck and glad you figured it out before a lot of permanent damage was done.

Welcome to the forum.

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You are actually lucky to have figured out the solution so quickly.

I went through 10 years of IBS, multiple tests, dehydration from diarrhea after taking an antibiotic, eliminating lactose (eating tons of wheat cause I eliminated everything else) etc. etc. Finally, my MD got sick of listening too, and suggested wheat intolerance.

THREE DAYS later, all IBS symptoms disappeared. I later saw a specialist in Celiac who said I probably did have it, but that it didn't make sense to go back on gluten to prove it.

The only question I still have is, is it wheat or gluten intolerance?

Karen

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You are actually lucky to have figured out the solution so quickly.

I went through 10 years of IBS, multiple tests, dehydration from diarrhea after taking an antibiotic, eliminating lactose (eating tons of wheat cause I eliminated everything else) etc. etc. Finally, my MD got sick of listening too, and suggested wheat intolerance.

THREE DAYS later, all IBS symptoms disappeared. I later saw a specialist in Celiac who said I probably did have it, but that it didn't make sense to go back on gluten to prove it.

The only question I still have is, is it wheat or gluten intolerance?

Karen

Thanks everyone for replying to my post so quickly and in such a welcoming way. I plan approach my doctor one last time and demand that she listen to what I have to say, and act accordingly - we'll see what happens. I'll look into the enterolab testing option if I get desperate for a diagnosis.

In direct reply to Karen's post above, I actually have suffered from IBS-like symptoms for five or six years, on and off, but only recently (last Sept.) did things begin to become acute and persistent.

To answer your question about whether its a wheat or gluten intolerance for me? - I'm not sure. I'm told recently that my 'new' diet isn't gluten-free, per se, but rather simply wheat product free. No beer (the odd time I get weak, and have a cold one), no whiskey/rye, etc, no wheat bread, crackers, wheat based pasta, pie, cake, etc. I've been eating rice pasta, bread make from spelt flour, rice crackers, and those kinds of carbs. I eat a lot more fruit, vegs., rice, well-cooked meat or ground meat, dairy, etc. Driking rum seems to sit well with me lately. Things certainly are better, but am I as good as I can get were I to cut out all gluten entirely? -- I don't know that, but only that I am better than before. We certainly are what we eat, which I took for granted far too long.

What I do know is that I'm not getting the acute block-ups in my upper and lower GI like I was, and the bowel movements are more or less back to normal. I have to be careful with consuming any substantial quantity of very lean meats, because of the rate of gas build up and discomfort it can cause, especially at night, but gas does pass through quicker and more normally now that I'm off wheat stuff. [Can't believe I'm relaying things like this!]

It would appear that my case may be more mild than what I've been reading about on this site. Thanks to all and I do welcome further input/dialogue from people on my case, though many others here might need more attention than I.

regards,

Steve

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