Got Worse On Wheat-free Diet

[KevinG]

Hi all,

This is my first post here. I have an interesting story: I got worse on a wheat-free diet.

I have very few gastrointestinal symptoms except for a bit of bloating. My big problem is interstitial cystitis, though.

My sister was recently diagnosed with celiac disease (two independent positive blood tests + negative biopsy). So, I decided to get a blood test for celiac myself. It turned up negative. But just to be sure, I tried a wheat-elimination diet. After several days on the wheat-free I started to get diarrhea and gas pain, a pain that sometimes made me feel as if I had been kicked in the groin (I am a man). My interstitial cystitis symptoms did not change at all, and after 10 days I abandoned the diet (short trial period, I know).

Could this paradoxical worsening of GI symptoms on the wheat-free diet mean anything? Would a normal person experience this?

Thanks!

[CarlaB]

I got worse before I felt better ... I think it's withdrawal. You would probably need more than a week to try be sure.

The other thing, did you eliminate all gluten? Even hidden gluten -- cross contamination, old toaster, sauces, etc. Short term I feel worse when I get a little gluten than if I eat a lot. Long term, I get a bunch of other symptoms that come along with it. Kind of like a smoker -- if they go on smoking, an idividual cigarette won't bother them but they'll have ongoing health problems, whereas if they quit, a single cigarette may make them ill.

Again, I think it would take more than a week to have an adequate dietary response.

[Fiddle-Faddle]

And don't forget other sources of gluten: barley, rye, and oats. Barley malt is in nearly all cereals like Rice Krispies and Corn Flakes. Wheat starch is in most soy sauces. Oat fiber is in most protein bars. rye isn't in all that much that I know of.

Could your stomach problems be related to what else you are eating? What is a typical day's worth of meals for you?

Are you eating a lot of gluten-free cookies and breads? That can be tough on your tummy, too.

[Nantzie]

I agree. Wheat free is barely scratching the surface, so if you're not completely gluten-free, you haven't given it a real shot.

My stepmother figured out wheat is a problem with her YEARS ago and completely avoids it. But she's not gluten-free. She has so many problems still. I suspect that she has celiac, but she hasn't been tested yet and I don't know if she ever will be. She's been wheat-free for over 10 years and her reactions are just getting worse.

Also, if you do give hard-core gluten-free a shot, and you're still having problems, look at other food intolerances. What are you eating more of rather than gluten? Some people eat a lot of soy or corn in replacement of gluten and find out they are intolerant to those things either in addition to gluten, or instead of gluten. So keep that in mind as well.

Nancy

[Guhlia]

For me, the gluten withdrawal was the worst part. It's horrible. I hope you give it another good shot and eliminate all gluten, not just wheat.

[Nancym]

One thing to think about, if you're hitting the gluten-free substitutes hard they might have bean flours in them. Beans have a lot of "resistant starches" that can't be digested by humans and it goes down to the intestines and gets passed onto bacteria that digest it, they produce gas and possibly other things when they feed. So you might want to pass up the gluten-free convience foods for awhile just in case they're causing you intestinal distress.

[Ursa Major]

I agree with the others. Also, have you ever considered that dairy may be one of your problems? It can cause the same villous atrophy as gluten (as can soy), with generally the same symptoms. It could well be a combination of gluten and casein. Plus, as has been said, you weren't gluten-free, just gluten light.

And withdrawal can be a real problem. Many people are ready to give up if they don't feel better after a week (or feeling worse). But it can take two weeks for the withdrawal symptoms to stop. In order to give it a good, valid try, you need to do the gluten-free diet for at least four to six weeks to know if it makes a positive difference.

[Mayflowers]

My IBS symptoms suddenly appeared after years of being under control when I stopped eating wheat. It went on for about 3 weeks before it stopped. So I agree, I think it was withdrawal. Wheat withdrawals are horrible. I'm glad it's over for the most part. I still miss cake though...when I go into the grocery store and see all the boxes of cake mix and cereal.... Missing is quite different from having withdrawals...I can report however, I dropped 5 pounds so far. I'm eating low fat semi vegetarian.

[KevinG]

Thanks for the replies everyone! I restarted the gluten-free diet and have noticed the same GI symptoms. But I'm very interested to see what unfolds a few weeks from now!

[CarlaB]

You might try eliminating dairy and soy, too, if you're not getting rid of the GI symptoms. A lot of us have problems with those, too. I know the casein in the dairy will cause as bad a reaction in me as the gluten. After a few weeks of feeling better you can do a dairy challenge and a soy challenge (at different times) to see if either causes the reaction.

[Guest nini]

that is a pretty common withdrawal reaction. I felt absolutely TERRIBLE when I first went off gluten. It really took a while for my body to recover. I also had to eliminate dairy for the first six months. Stick with foods that are naturally gluten-free instead of the substitute products for your trial period so that you don't feel deprived... have fresh fruits and veggies, baked, broiled or grilled meats, grains like rice, quinoa, whole foods basically... potatoes, corn, keep it simple. You can use salt and pepper and herbs to season things with and olive oil or vegetable oil to cook with, steam veggies... anyway, if you stick with a diet naturally free of gluten and dairy and soy for a while you can gradually add things back in and monitor your body's reactions. Keep a food journal while you are doing this experiment and monitor any symptoms, emotions, reactions good or bad and you may start to notice a pattern emerge.

I really think your getting worse initially was the result of withdrawls... since I experienced this myself I can attest that it was NOT FUN and I really wanted to dive into a big ol box of Krispy Kremes to stop my misery. You can do it. Keep us posted how you do!

[AndreaB]

Welcome Kevin!

I didn't have obvious symtpoms until going gluten free and when I get glutened they aren't that bad and over in a day. I only get glutened when eating at my mothers , if at all. I don't go out to restaurants. We are gluten/soy and dairy free. See sig.

I just wanted to welcome you and ask that you keep us posted on how your gluten free trial is going.

[RiceGuy]

It took six months of being totally gluten-free before I noticed any improvement. Before that I was trying to narrow down the culprits, so I'd be eliminating only one suspect/wheat source at a time. Eventually I put two and two together - thank goodness. Once off ALL gluten, things began to change. All sorts of weird stuff started, and that went on for months. I kept going since there was enough positive change to make it worth the shot. After all, nothing else I tried had much if any effect, so even a weird change was a welcome one. At least it told me I was getting closer.

So yes, definitely keep going on the gluten-free diet. Just remember to replace the nutrients in the gluten-containing foods you were eating with safe ones, so you maintain your balance. I think the withdrawal would be lessened if the only thing your body misses is the gluten - which can be a chemical addiction at this point.

[lonewolf]

This reminds me of when I went dairy-free and got WAAAY worse. I discovered the problem pretty quickly though - I substituted soy milk for all the regular milk I'd been drinking. The trouble was that I discovered that I'm more allergic/sensitive to soy than to dairy.

So, I say this because I wonder if you've substituted something for the wheat/gluten and are eating more of whatever it is. Someone mentioned bean flour. What about more corn, soy, dairy or anything else that you've increased?

I didn't go through the withdrawal that others talk about. I felt better almost immediately after eliminating gluten, dairy, eggs and soy. But I've never been considered "normal" by anyone's standards.