Please help me figure this out

karenswans · Post by **karenswans** » Wed Oct 05, 2011 7:44 am

I went GF/SF/DF/EF on September 25 after receiving my Enterolab results. I almost immediately felt better. The remaining D I had cleared up right away, and almost every day I was feeling more and more energy. I wasn't having the pain and bloating that have been plaguing me for years. I couldn't believe it.

Fast forward to yesterday. The pain and bloating are back. The stomach gurgling is back. The fatigue is back in a huge way. Still no D. What happened? Some possibilities:

-I've been eating mostly the same things during this time, but on Saturday I went to a "gluten free fair". I ate a piece of gluten free pizza before realizing the cheese was dairy (duh).
-I ate a salad on Monday night, which is the first time I have had raw veggies in quite a while.
-I changed to brown basmati rice (from jasmine).
-I eat GF oatmeal every day, but I have all along. But maybe that's too much fiber when combined with the brown rice?

Any ideas? I feel terrible and want to start feeling well again like I was last week.

Post by **tex** » Wed Oct 05, 2011 8:10 am

It's difficult to say, but as you point out, it could be any of those items, or it could be a combined effect.

If there was iceberg lettuce in that salad, that's a prime suspect. Iceberg lettuce is bad news for virtually anyone with MC. If you put any commercial dressing on that salad, it could be the problem, also.

Tex

karenswans · Post by **karenswans** » Wed Oct 05, 2011 8:15 am

The dressing was one I bought at the gluten free fair. Locally made with only a few ingredients (white vinegar, olive oil, blackberries, sea salt). The lettuce was romaine.

How do you deal with this when this happens to you? It doesn't seem like there's any way to know what caused it. I have the impulse to just cut out everything I suspect, but if I do that every time won't my world of food just keep getting narrower and narrower, maybe needlessly?

Zizzle · Post by **Zizzle** » Wed Oct 05, 2011 8:35 am

I would suspect the GF pizza at the fair. Many GF crusts are made with soy flour and tapioca flour (which I recently realized I don't do well with). The accidental cheese alone would have made me a mess. But the fiber from the salad and brown rice didn't help things either. Sadly, you have to ask for the ingredient list when you order any GF pizza crust (unless you know the brand name, like StillRiding). And load up the toppigs when you skip the cheese, and then hope to God the kitchen didn't contaminate the toppings with gluten...

Post by **tex** » Wed Oct 05, 2011 8:44 am

Karen wrote:How do you deal with this when this happens to you?

It doesn't happen to me, because I don't eat those foods, with the exception of a little brown rice, sometimes. There is no way to be sure what caused the reaction, because you are eating a lot of foods that might be considered, let's say, "risky" for someone with MC. That doesn't mean that you shouldn't eat any of those foods, it just means that they should be eaten in moderation, and if you want to "test" them, to see which ones might be a problem for you, you have to test them one at a time, not all together.

As your immune system begins to "recover" from the constant onslaught of, let's call them "food allergens", and it discovers that it is no longer bombarded with gluten, casein, soy, etc., every day, it will become more sensitive, and you will react to smaller quantities of food allergens. That means that until your recovery is complete, and your gut has had some significant time to heal from the damage, you have to be extra careful about even tiny amounts of foods that you are sensitive to. After a year or two of healing, you will still be sensitive to those foods, but tiny amounts of them probably won't cause any major symptoms, and any reactions will tend to be mild, and will not last very long, (unless you continue to eat the offending food, of course).

Based on your reaction time, the salad is still the main suspect, IMO, especially if you ate that salad away from home, since salad bars are notorious for cross contamination risks. I get the impression that you ate it at home, though, so if you made the salad yourself, hopefully, it should have been free of gluten, etc. A significant amount of raw vegetables in one meal, though, is pretty risky for someone in the early stages of recovery, so I'm guessing that the salad was probably the straw that broke the camel's back.

If your reaction continues, there's a good chance that it could be the oats. Many of us here are sensitive to even pure oats, including me. Just because you haven't noticed any reaction to it until now, doesn't mean that it is safe. Until your anti-gliadin antibody level decays to a point below the threshold for a reaction, your immune system will pretty much ignore other antibodies, such as the anti-avenin antibody triggered by oats, (if you happen to be sensitive to oats, that is). At some point, as the other antibodies fade away, your immune system will begin to notice any other food sensitivities that might be present, and oats is a distinct possibility.

However, it's a bit too early in your recovery, for your anti-gliadin antibody levels to have decayed that much, IMO, so I doubt that your immune system would be ready to to react to a "new" food allergen. I think that the problem was probably one of the items you listed, most likely the salad. I could be wrong, though, obviously.

Tex

P. S. I agree with Zizzle that it could have been the pizza, but you really should have reacted sooner, if that was the problem - still, it's certainly a possibility.

karenswans · Post by **karenswans** » Wed Oct 05, 2011 9:10 am

Thank you both for the advice.

I did make the salad at home. It was a very small side salad, but it was the first time I tried that quantity of raw veggies since...oh...May? I guess I rushed it.

I hope it isn't the oats.

MaggieRedwings · Post by **MaggieRedwings** » Wed Oct 05, 2011 10:06 am

Hi Karen,

I have to say that just about everything you ate would be considered risky for me. I thought salad was finally back in my diet on a weekly basis but have had to go longer than that now. Eating out, especially at a fair, is something that screams contaminents to me. Like Zizzle, I can no longer do tapica starch or flour. Don't really know why but still fine tuning in some areas of my diet after almost 11 years. Tex and I are the ones who have really sworn off oats since our reactions were so bad. I am sure there are others.

Love and it does get better.

Maggie

karenswans · Post by **karenswans** » Wed Oct 05, 2011 10:58 am

Thanks, Maggie.

The "fair" wasn't really a fair. A specialty health food store here had a day where they had a lot of samples of gluten free items, and they marketed it as a "gluten free fair". I thought it would be a good way to try some things without having to pay the big price tags that gf things usually have. When I first walked in, there was the pizza. They offered me a sample, and I must have been stupid that day because I said, "sure!" and ate it. Then I realized that even though the items in the store were gf, I still had to watch out for my other sensitivites. I was more careful after that and made sure everything I tried was SF/EF/DF in addition to GF. I bought two things--the salad dressing I mentioned above, and a gf/sf/ef/df chocolate muffin from a well-regarded gf bakery here in Seattle (Flying Apron is the name of the bakery).

I think I pushed it on the salad. I guess I got cocky because I was feeling so well. Lesson learned, for sure.

sarkin · Post by **sarkin** » Wed Oct 05, 2011 11:40 am

Sorry about your hard lesson! It might not have been the salad - but at least it gives you a place to start.

I am very wary of GF products, and am finding it easier not to anything in that category than to figure out what I can tolerate. I found oats really bothered me when I first got sick, and am thinking I'll just leave them out forever. On rare occasions when I eat grains, I stick to rice or corn, in small quantities. My original idea was to add them back when I was "better" - but now that I'm better, I think I'm going to try to stay that way

Hope your own version of better is on the way,

Sara

maestraz · Post by **maestraz** » Wed Oct 05, 2011 4:09 pm

Hi Karen,
Maybe you will find that lettuce/salad is a no-no for you, and you have to avoid it for a while or forever, but it may just be a case of changing the type of lettuce you eat. I haven't eaten iceberg lettuce in many years, just because it has no taste, and therefore, to me, no value. But I do find I can eat salad in limited quantities if I go with "softer" baby greens that don't have hard spines or stalks, or real pointy leaves. If I want romaine, I cut out the spines. I also don't seem to have issues with cooked greens like chard or kale, again, as long as I cut out the spines (which recipes will tell you to do anyhow) and don't overdo it.

I have bought bagged greens in the past, but am now avoiding them. I never do salad bars from a grocery store, though I have done them in restaurants on occasion. Again, VERY small plate, and more safe toppings than greens.

karenswans · Post by **karenswans** » Thu Oct 06, 2011 6:17 am

Thanks, everyone. I'm feeling a little better after reverting to foods that I think are safe for me. Mostly meat, soft veggies, jasmine rice, bananas, almond milk (not much), and GF oatmeal. I also sometimes eat Chex cereal with almond milk as a snack. I know the cereal and the oatmeal are the likely suspects if I continue to have problems. They'll be the next things I cut if I have to.

sarkin · Post by **sarkin** » Thu Oct 06, 2011 6:38 am

Glad you're feeling better. (There are some really good hot rice cereals, if you suspect, or just want to rotate, the oatmeal.)

karenswans · Post by **karenswans** » Thu Oct 06, 2011 7:06 am

I think I'd like that....can you give me the name of specific brands you've found to be safe?

Sharaine · Post by **Sharaine** » Thu Oct 06, 2011 8:31 pm

Hi Karen,

If it is any consolation, I ate a salad with ahi tuna on Monday while I was in NYC. There was nothing else gluten free available in the little cafe connected to where I was attending a symposium. I thought it would be okay. By the evening, I had full blown bloating, gas and D.

I, too, have to back off salad (it was Romaine, by the way) for now. I'm going back to basics ... chicken soup, bananas, GF cereal that is also oat free, brown rice bread, and eggs. I'm paying the price, even 5 days later.

Do let us know how you are feeling as time goes on.

Sharaine

karenswans · Post by **karenswans** » Fri Oct 07, 2011 1:43 pm

Thanks, Sharaine, it really does help.

I've done it again, I'm afraid. I had a very violent reaction to something today. My diet has been very basic, and today I decided to add oats back in. They had never caused me a problem before, and I thought I could test them. Well, then I got to work. My friend here, who is a fabulous baker, decided to make me a gf/sf/ef/df chocolate cake. I had a piece while she watched me with anticipation to see if I'd like it. (it was good).

2 hours later, bad bad bad D (at work, oh joy) and now of course I don't know if it was the oatmeal or the cake.

I can't help but feel a little inept. I get the principles behind this diet, and I understand about being systematic to test questionable foods, like the oats. But here, in less than 2 weeks, I've managed to mess up twice in such a way that gave me a bad reaction but no new information.

This is way harder than I thought it would be, and it's not from lack of understanding. it's from unexpected or unfamiliar situations (the gluten free fair, the cake) throwing me a curve ball that I'm not fast on my feet enough yet to handle.