Problem With Symptoms, Yet Gf. Please Help, Guys.

[LLCoolJD]

Hi everyone. I've been a lurker here for a while, but had to post so I registered earlier tonight.

I had celiac-like symptoms starting in freshman year of college (the year after a prolonged period of antibiotic use, and around the time I think I got hit with mono....go figure). The symptoms slowly got worse until I decided to go on a gluten-free diet after I graduated (at the end of college, I had massive gas, stool consistency was deteriorating rapidly, and even had one small accident at night, which was disturbing and upsetting to say the least). I have never been formally diagnosed (it runs in the family) with Celiac disease (I'm getting a full workup later this month).

Anyway. I went gluten-free at the beginning of this year, and felt better. Tried pizza to test my system, and BOOM, bad symptoms. So a self-diagnosis, if you will. Later accidental ingestions also made noticable problems.

Cut to present day. I am getting symptoms of gluten, even though I'm gluten free, and limit my lactose intake to almost nothing (half and half with my coffee, and the odd bit of Lindt chocolate). I'm *positive* that I'm gluten free (unless Crest toothpaste has gluten).

My last gluten ingestion came in the form of 4 or 5 protein shakes in the first or second week of August (they were malted... the barley was not listed on the ingredients). These shakes, I admit, did a REAL number on my system. Terrible, terrible symptoms resulted. Those symptoms slowly subsided, but ever since those shakes, I've not had solid bowel movements and have gas that has gotten in the way of my classes and social life (I'm starting to take Immodium until my appointment with a gastroenterologist later this month).

I suspect my small intestines are of the icing-rink-smooth variety, so I don't expect a quick 2-week recovery. But how many of you have to take Immodium for weeks and weeks before coming off of it? Is it normal for gluten symptoms (gas, unsolid bowel movements, etc.) to persist for more than 3 weeks after eating gluten? That's really what I'm trying to figure out. I'm only 23, and like to think of myself as being in fighting shape, but there's still always the specter of collagenous colitis or refractory sprue, and it gives me the chills.

Thanks everyone. From what I've seen, you seem like a supportive bunch.

[Rachel--24]

I'm just really starting to figure out how gluten affects my body, how long my reactions are, recovery time..etc. I notice if I get glutened repeatedly (this happened with my lotion) it can take weeks for me to get back on track. If its a small setback...it might take up to 2 weeks for my stools to look a little better. I also lose weight fast if I'm glutened. I'm just starting out so it seems like a small slip-up can really affect me.

[shimma]

Hi, I'm sorry you're still having symptoms. I know how frustrating it is because I've been gluten-free for two and a half years and I still struggle a lot with GI problems. The digestive upset you experience may be due to other allergies or just eating a lot of foods that are hard for your smooth intestines to digest. I would recommend paring your food options down to a bare minimum to see if you can construct kind of a "safe list" of foods that you seem to tolerate well, and stick to those foods for a while and then slowly reintroduce more variety. That seems to be working for me, and although it's limiting, it's also empowering to feel like you have more control over what your body is doing.

You mention Lindt chocolate - are you sure the ones you're eating are gluten-free? I ate a sample that was passed out at one of their stores and didn't check the label until afterward, and then found out it had malt flavor. Maybe not all of them have malt, but you may want to check with the company.

[kabowman]

I agree, try and elimination diet...go to just basics, fresh/not frozen meat, no lunch meat, plain fruit & veggies for a week or two, see how you do and start adding stuff back in slowly to check your bodies reaction.

Keep a diary of food and reactions which is a real pain but works. Also, you can eat out if you keep the food simple.

It may be something like soy milk you have added in to your diet to replace milk that is the culprit.

[LLCoolJD]

Thanks for the replies. I'll try that.

[rjordan]

Dude, I'm feeling you. I've been sidelined for 3 days with awful GI issues (kind of like as though I ate WOW chips or something!) I have no freaking idea what I ate that caused this stupid turn of events. I've been gluten-free for 2 years and this happens about once a month or every couple of months or so...I feel fine, no worries, then I'm hit with diarrhea for like 2 or 3 days, then I'm fine again. It sucks. I think contamination of my food is an issue...and the fact that by the time my not-so-great doctor figured out was was wrong with me, my intestines looked like a battle zone and are weak like tissue paper! Anyway, unfortunately I don't have any new good advice for you, really, I just wanted to say I empathize my man. I'm going to try to keep more focused on the food diary, and pay closer attention to things like sauces and condiments. Other than that, keep hydrated, and make sure to use a chaser with the awful flavored imodium tablets.

Also, here's a funny poem I just found through Google:

Ode to Immodium(sic)

Oh, Immodium,

Constipator of my colon,

Immobilizer of my bowel;

You make it possible

For me to leave

The house and take

A long walk in the

Countryside, without

Having to remember

To pack

Toilet roll

And a small trowel.

© Alex Frankel 1998

[LLCoolJD]

Ode to Immodium(sic)

Oh, Immodium,

Constipator of my colon,

Immobilizer of my bowel;

You make it possible

For me to leave

The house and take

A long walk in the

Countryside, without

Having to remember

To pack

Toilet roll

And a small trowel.

© Alex Frankel 1998 

<{POST_SNAPBACK}>

haha Thanks for the support (and the poem). I'm definitely determined to fight this disease.

What I like about the Immodium AD is that it is really potent; one dose covers me for a good 48 hours or longer. Still, hopefully I won't have to use the stuff for too much longer.

[beth]

I'm so glad to hear about you guys:)

Your story sounds a little like what I've been dealing with. I've been gluten-free for 2.5 years, but now I'm starting to wonder. I had no symptoms for the two years I was gluten-free, but about 3 months ago I started getting gas and diarrhea again.

I'm a vegetarian, now a vegan because I cut out all dairy. I can't figure out what I'm eating wrong now. Soy has been big in my diet, without problems, but maybe that's what it is now? How long should you eliminate something from your diet until you find results?

I teach and I'm starting to get afraid to be in a classroom for two long. My weight is dropping because I'm afraid to eat. Don't want to lose it in a class or at night.

My doctor said that stress can cause flare-ups, but I think this is getting ridiculous. It gets a little better for a couple of days and then gets lousy again.

How often can you take Immodium (loved the poem, btw)? Does it hurt you or keep you from knowing what's hurting you?

You can tell - I'm starting to get a little desperate.

Thanks.