Doctor Today. Maybe Some Answers.

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i'm leaving for the doctor today in about 45 minutes. sorry this is so late, but i have seen many responses really quickly... so, please help.

i'm not sure if i have a gluten intolerance, but it seems that i do. i have been on a gluten free diet for about two and a half months. after the first month and a half or so, my symptoms went away. last week, though, i had kidney stones and the symptoms came back the next day, full force. including joint pain (it travels back and fourth from one hip to another), diarrhea, some nausea, some cramping, but mainly spasming. I have had these symptoms for 8 days now. the gluten-free diet doesn't seem to be improving things anymore. i am also, lactose free. once again, i have no idea if i actually am gluten/lactose intolerant. or caesin for that mater.

this will be my second trip to see this GI. not including the time i saw him for the colonoscopy which did determine that i did not have Chrones disease. but this about the eighth time i have been to a doctor about these symptoms since april. i have had no definitive answers. i have had many blood tests, a stool sample, countless urine samles, and a colonoscopy. all since mid july. and no real answers.

i have had to quit my job, because i never know when i'm going to be sick. this makes me quite unreliable, which is not characteristic of me. I have had pretty tough bouts with depression and constant anxiety. also, both extremely uncharacteristic for me. I can't remember the last time that i let anything get to me, but this is really doing the trick.

so...

I was wondering if anyone had any tips on what i should speicifically ask the doctor about.

please... anything.

rob

[CarlaB]

Since you've been gluten-free for 2 1/2 months, blood tests for celiac disease would definately have a chance of a false negative.

My glutening symptoms last 8 days. If you've been sick for 8 days, maybe there was something you ate that was contaminated. If you have found all the hidden gluten in only two months, you are definately in a minority around here!!

Maybe someone else will have better suggestions. I'm not that good with docs.

[lonewolf]

Sorry you're going through this. A lot of people on here seem to find out that they have other food intolerances after a month or two of gluten free. You could possibly be casein intolerant (not just lactose) and have problems with other foods too. I know for myself that I have to avoid gluten, dairy, eggs and soy. Just eating gluten-free wouldn't keep me healthy.

You could ask the doctor about other food intolerances, but don't be surprised if he just wants to give you medication. CarlaB is right - a celiac test likely won't be accurate if you've been gluten-free. I hope you get some answers.

[CarlaB]

Liz brings up a good point. I had to give up casein four months into being gluten-free. I kept thinking I was getting gluten somewhere, but it always was associated with dairy. I get every bit as bad a reaction from dairy as gluten.

[Nantzie]

Hi Rob -

First of all, I want to send you some encouragement. This is a very difficult thing to go through, and anyone would feel the same way you do. Unfortunately, not being able to work because of symptoms is very common around here.

Not taking into consideration the kidney stones at this point, just discussing the celiac-type symptoms -- Since you had an improvement in symptoms, followed by a return in symptoms, I would say that maybe there's some gluten getting in somewhere. After you go gluten free, it tends to take smaller and smaller amounts of gluten to create a reaction.

The first thing I would question is whether your medication from the kidney stones (they give you meds after that right?) has gluten in it. I think it's mostly used as a binder when it's used. You can actually ask the pharmacist to look that up. Even some over-the-counter medicines have gluten in them.

If it's not that, I would make sure all of your personal care products (and those of your wife or girlfriend) are gluten free. Things like shampoo often has gluten in it. Sometimes a sudden upsurge in symptoms is just because a just-purchased product has gluten in it and you don't think to look.

You also need to make sure your cooking area is free of cross contamination sources - toasters, wooden spoons and cutting boards have to be replaced and designated gluten-free only. You have to have gluten only peanut butter, mayo, mustard, etc (anything that a gluten-contaminated knife might be put into).

I don't know anything about what else would be causing your symptoms or what to ask the doctor. I would just tell him that you had had some success in controlling your symptoms with a gluten-free diet, but have started having problems again, and wanted to see what other possibilities should be looked into.

Nancy

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so, i found out that when they were doing the colonoscopy, they also entered the small intestine and biopsied the tissue from there. he said that there was no indication of "sprue" he said that we need to do the "sprue panel." he is also doing three or four other panels.

lots of bloodwork. I don't get the results for seven days. so. i guess i try to find the hidden gluten.

rob

[Guest nini]

rob if you've been gluten-free already for over 2 months the blood work will likely be skewed... if it comes back positive AFTER you've been gluten-free this long then you most def. have it, but if they come back negative, doesn't mean anything... the dr. can keep looking for other things, but more likely is you are getting more sensitive to smaller amt.s of gluten the longer you are gluten-free, or you have other intolerances that are starting to rear their ugly heads, like for example soy or dairy...

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yeah... i thought about that.

when the colonoscopy (the dr. actually went into the small intestine, as well, and he did a biopsy of SI tissue that showed no indication of celiac disease) was done, i had only been gluten free for about... three weeks to a month. so that should have showed, right.

also, i am currently having symptoms, so, if gluten is the culprit, it should show, right?

yeah... we'll probably do a gluten challenge if all else fails.

rob

[Guest nini]

they needed to do an ENDOSCOPE not a colonoscopy to do a biopsy of the small intestine... even so, damage can be missed, either because they didn't take enough samples, didn't take samples from a damaged area OR the lab didn't know how to correctly read the slides... a lot of times there will be signs of inflammation or slight blunting of the villi and they will not consider that Celiac for whatever dumb reason they are waiting for your small intestine to become completely damaged before they will concede that OMG you may actually have this very very rare condition! LOL...