Calling all post-op DS'ers with gluten allergy/sensitivity

I spent some time perusing earlier threads and it seems there are several of you out there who don't tolerate gluten but I wasn't able to find what exactly gluten does to you.  I am wondering if this could be exacerbating my intestinal/constipation problem.  I was tested for Celiac and that was negative, but after reading some more I discovered that you can be negative for Celiac but still be gluten sensitive/allergic???

So, if you all into this category, I'm curious:

What sort of ill-effects do you have from gluten?
How'd you figure out it was gluten giving you problems?
What did you do about it?
Talk a little about your dietary changes.  I've been so hard wired to get in protein protein protein, then COMPLEX carbs from multigrain sources.  The past couple of days I've tried to avoid anything whole wheat or wheat based and my abdominal distention seems to be better.  I've had potatoes, brown rice, even white flour with no ill effects. 
Any supplements or meds you take to help?

Just trying to put together more pieces of a very complex puzzle I've been dealing with...

My parents were told I had celiac way back in the dark ages of the late 1950's but I haven't been tested as an adult with new tests and such. I have to assume given my lousy labs and dexa scan as a pre-op that I probably do have celiac and not just a gluten sensitivity. I had extreme intestinal cramping and diarrhea as a kid until my late teens and early 20's. As time went on I was able to tolerate gluten without any problems.  

Fast forward post-op DS: Whole wheat and certain whole grains give me intestinal cramping and diarrhea, very much like when I was young dealing with celiac. Food in general makes me gassy regardless of what it is. Low carb high protein...whatever. Soft drinks are like propellant and there's no controlling the gas. Probiotics don't work, but maintenance doses Flagyl/fish zole does, if I stay low carb. I don't know all my tolerance levels and I suppose they change over time with the DS. I can have some things that have gluten in them but not go overboard. I can eat multi-grain deli flats without issue but not triscuits. There was some fancy whole grain bread I got hold of from Whole Foods. Boy, was that ever mistake!

So, I avoid what gives me problems. DH has gone on my high protein / low carb / gluten free diet and he's healthier for it. I don't eat a lot of veggies and rarely grains and flour. I do have a little fruit every day in my yogurt. Weekends, I 'm a little freer with my eating. Weekdays, I try to stay on the straight and narrow unless it's a night out with the MADS.

I hope you can ID your problems and avoid those foods. You'll feel so much better.

--g

       

Here's yet another of those cases where we faithfully listen to our NUTS telling us how healthy complex carbs and multgrain foods are for us as DS'ers (because that's what they were TAUGHT in dietician's school) and for soooooo many of us, the results are quite devastating.   Wheat in almost any form is intolerable to me.  It's a bit better now than it was, but I still have lots of issues with it.   I actually do better with pasta than with whole wheat productst - go figure.   Flax (which is gluten free) also causes me problems, as does brown rice.    Potatoes, corn, and white rice work best for  me.  You might notice some improvement down the line, but I'd make a conscious effort for a while to eliminate these products from your diet, especially with the problems you've been having, and see how it works for you.

 Julie,
I'm always amazed when people know exactly what causes issues. How do you figure this out?  Do you eat only one type of food at a time?  How soon after eating, say whole wheat flour, do you notice problems?   Thanks.

I eat a fairly low carb diet, so it's usually pretty obvious, when the gas shows up, what I can attribute it to.   Truly though, my knowledge of what triggers problems comes from four years of trial and error!   The flax I found about because someone posted on here a recipe for making a cake or muffin or something with flax meal.  OMG - within two hours I was a mess!    Nowadays, my gas starts rolling in from two to four hours post consumption.   

Hi sweetie!  I'm DEFINITELY a gluten-intolerant post op!!!!  I spent a TON of time in denial.  I tried doing only 100% whole wheat products with a little bit of luck, and found if I took Beano along with those WW products that I had less gas with it.  However, the Beano lost it's effectiveness for me over time.  I have been avoiding gluten products like pizza, pasta, cake, cookies, bread and flours of any kind for almost a year now. 

The ill effects that I got was EXTREME bloating and usually bad gas from having just a little bit of gluten, and diarrhea if I had quite a bit of a gluten product.  I can't really explain portion wise, but usually ONE serving will just give me gas, more than one serving and I was running to the bathroom with diarrhea.  Avoiding flour products all together has been my best line of defense.  I figured out it was gluten because I did an elimination diet.  For three days, I went to protein shakes ONLY.  I drank 6 each day and never had the bloating or gas.  Once I knew that protein shakes were not my problem, I tried having 6 protein shakes on the fourth day and added 2 slices of whole wheat toast with butter for breakfast.  Sure enough, I bloated like a blowfish and the gas began.  I get the same effects from all flour-containing foods within an hour of eating them.  Other DSers say that flour products will give them gas many hours later, for me it's damn near immediate.  It's almost as if I've administered poison into my body....it's awful. 

Since eliminating wheat flour, white flour, oats, corn, and rice from my diet, life is much better.  I have normal person amts of gas, less bm's, and the bloating is rare these days.  I feel so much healthier and not wimpy...it's hard to explain really.  I do add a couple of teaspoons of benefiber to my morning protein shakes since I no longer get much fiber. 

It takes time to really eliminate it from your life, but the benefits are amazing...at least they have been for me.  Good luck girlie!

Lori

Now...my thoughts about gluten in any form...including soy sauce and teriyaki...POISON....I avoid all gluten, flour, oats etc.. I will eat potato and corn but in minimal quantities. My reaction to gluten isn't cumulative it is instantaneous...ugh...the pain,bloating and diarrhea aren't worth anything that I used to love preop!(Pretzels...tricuits...multi grain and whole wheat breads) The other thing the NUT didn't share w/ me was Sugar alcohols...sorbitol...etc...They are poison for me...same sharp pains and massive explosions...like world war III in my tummy and intestines.

<---- raises hand for gluten intolerance

- no white flour.
- no whole wheat flour
- no multi grain stuff
- gina, "major mom" is the one who told me to back off the gluten and see what happens.  sure nuf.  that was it. i was just about 3 -4 months  out when her advise came to my rescue.
- some gluten free breads will give me only gas.
- if i consume, maybe more than a tablespoon or two of gluten i seriously pay for it the next morning.  serious cramping for hours followed by sitting on the toilet with the squirts.  feels like my stomach is literally flipping inside of me.  not a good feeling.
- ate a rice krispie treat saturday.  hey, it's rice, i can treat myself.  wrong.  sunday was a nightmare all the way home from a 4 hour trip. we must have stopped at every rest stop and fast food joint so i could use the bathroom. 
- the malt in rice krispies is not gluten free.  (sigh)
- ugh

My gluten effects include painful gas that won't pass, bloating and nausea.

I knew it was gluten because of the vets who have come before me.  I tried one food type at a time when starting to eat solids.  I wasn't lactose-intolerant at all (yay!).  I avoid wheat like the plague.  I had some inadvertantly once and was miserable.

No supplements or meds.

Hugs,
Ratkity

Sometimes I think its not really the gluten but the baking powder. Weird huh? I can eat some things...others NOT. Like piecrust is ok...1/2 biscuit works but not the whole thing. I can eat 100% whole wheat bread...go figure. I can eat chocolate chip cookies by the bucket full but not a whole danish.

I do think the baking powder is key for me, even though there is gluten intolerance.