Detecting Other Dietary Sensitivities

[KerriAnne]

It seems like many of you have other sensitivities besides gluten, and I wondered if you could give me some advice...

After year #1 on a gluten-free diet, I was feeling great...antibodies came down remarkably well, and I felt like a whole new person! However, ever since then (the last 1 - 1.5 years) I haven't been feeling as consistently well. I don't think I've gotten lazy about the diet, and there's nothing else obvious that has changed. Perhaps I've grown more sensitive to other things in my diet? I recently went through a month-long ordeal of feeling horrible all over again...just like right before I got diagnosed... could barely make it through a day of work (fortunately my apartment is only 2 blocks away & I have a very flexible schedule!!!), abdominal pain again, so tired, etc. Yet, when I went to my doc, all my antibody levels were normal. It's gotten somewhat better in the past couple of weeks, but I'm still not well. It seems that I occassionally get these brief periods of misery that eventually get better for a while. I was so amazed when I responded so quickly to the gluten-free diet initially a few years ago, but now I'm really not feeling well again even though I'm not eating gluten.

So... how do I go about finding out if I have other food sensitivities? Are there other blood tests? I'm sure it'd be good to keep a food journal for a while to see if I can notice any patterns. I'll make a follow-up appt with my doc too.

Any advice would be helpful!

Thanks!

[Rachel--24]

Could you be accidently glutening yourself here and there? Accidents or issues with cross contamination can be enough to make you feel bad yet not enough to raise your antibody levels so that it shows up on the bloodtest. Do you eat out much? There is always a big risk when eating out. Do you have your own toaster, peanut butter, etc.? Have you checked your shampoo, lipstick, chapstick....stuff like that? These are all sources of contamination. It sounds like you could be getting some gluten in somewhere.

If you're sure its not gluten...I would keep a food journal. Try an elimination diet. Since many Celiacs react to dairy I'd elimate that first. Try eliminating all dairy for a week or two and see if you feel better. Good luck.

[sweetp]

It seems like many of you have other sensitivities besides gluten, and I wondered if you could give me some advice...

After year #1 on a gluten-free diet, I was feeling great...antibodies came down remarkably well, and I felt like a whole new person! However, ever since then (the last 1 - 1.5 years) I haven't been feeling as consistently well. I don't think I've gotten lazy about the diet, and there's nothing else obvious that has changed. Perhaps I've grown more sensitive to other things in my diet? I recently went through a month-long ordeal of feeling horrible all over again...just like right before I got diagnosed... could barely make it through a day of work (fortunately my apartment is only 2 blocks away & I have a very flexible schedule!!!), abdominal pain again, so tired, etc. Yet, when I went to my doc, all my antibody levels were normal. It's gotten somewhat better in the past couple of weeks, but I'm still not well. It seems that I occassionally get these brief periods of misery that eventually get better for a while. I was so amazed when I responded so quickly to the gluten-free diet initially a few years ago, but now I'm really not feeling well again even though I'm not eating gluten.

So... how do I go about finding out if I have other food sensitivities? Are there other blood tests? I'm sure it'd be good to keep a food journal for a while to see if I can notice any patterns. I'll make a follow-up appt with my doc too.

Any advice would be helpful!

Thanks!

omigosh, i totally know what you're talking about, i've been feeling the same way latley...i'm thinking i have a corn intolerance now...i know for a fact that i wasn't getting glutened from anything, but similar sympotms have recently been comming up. i did notice that i have eaten ALOT of corn in the last few years...like a few meals a day...popped corn, corn chips, hot cereal, polenta, corn on the cobb...etc. anyways, i've been off corn for three days now, and am starting to feel better... it makes me more sad than you can possibly imagine...but i'm afraid that might be it...i'm getting tested next month... is there something in your diet like that, that may be affecting you?

[Guest southgoingzax]

KerriAnne,

Hi, sorry I'm at work so I can't be of much help, as I can't remember the name of the lab, but there is a blood-based antibody test that can determine other food allergies/sensitivities - my doc had my blood drawn at a lab and then mailed out the samples to the testing lab. It tested 90 or 100 different common allergens. It was expensive ( I think $900 or $1000) and I have no insurance, but it was worth it - I have several other "allergies" that were giving me symptoms just like I had been glutened. The main one was dairy (sigh).

My NP said that you can develop reactions to foods you eat a lot, especially as celiacs, because our diets are so restricted and we tend to eat the same things over and over again, thus creating an over-exposure situation. I used to eat tofu every day, usually twice a day and had soy milk with everything, but now it makes me a little ill, so I have had to cut that out. She suggested I eliminate all my allergen foods for 6-8 weeks then try reintroducing them one at a time to see how well I could tolerate them. Most things I can now eat every once in a while, but not dairy or eggs.

I think you may want to ask your doctor about checking for other sensitivities, as you could have developed new ones over this past year. Especially since you were feeling so much better!

Good luck,

zax

[KerriAnne]

Thanks for your replies...

Rachel-24: There's always the possibility that I'm accidentally glutening myself, so a food journal & a careful eye will hopefully rule that out or identify a source of gluten in my diet. I am considering cutting out dairy to see how I respond... Thanks!

Sweetp: Lots of corn in my diet too, so maybe I should consider this as a problem. (Had both corn on the cob and popcorn today!) I hope you start feeling better too!!!

Zax: It sounds like the blood testing would be a great help, but SO expensive! I do have insurance though, so I'll check with my doc to see if I can get screened. You also make a good point about overexposure to foods. It's often easiest to just eat the same safe foods all the time, so it's easy to imagine how your system could adapt and react against it. So I guess it's time to mix things up a bit more!

Thank you all for your suggestions!

On a positive note, today was actually a good day!

[KerriAnne]

I enjoyed that good day while it lasted...

Last night I went to a friend's for a Spanish/Mexican dinner party, which meant that I ate corn & cheese....two things I've grown suspicious of from your comments to me on this thread & my food journal. Well today I've been SO sick all day! I came home from work early, and napped since I had a killer headache and just felt so yucky. The headache is going away, but my tummy and body aches just won't quit. UGH! I don't think I was glutened as my friends all know about my celiac, and are always going out of their way to make "Kerri-friendly" foods, and even send me their recipes before they make stuff to be sure I can eat it (aren't they great?!?!?). But in thinking about my food journal, and your suggestions for eliminating common culprits, I think it's time to avoid dairy and corn for a while and see how I do. I'm sure symptoms can be variable, but would a reaction to dairy or corn cause similar symptoms as these?

Thanks!

[KerriAnne]

Dairy-free since Monday 8/7/06. Some symptoms are getting better, but I have nausea every day now. I have coincidentally added more soy, so maybe that's the culprit. (I was also just put on a migraine med so maybe that's the problem.) Anyhow, I am actually feeling a bit better than I was overall. I'm going to continue dairy-free, and see if the symptoms totally subside. If so, then maybe I'll test myself with a glass of milk. Does that sound reasonable? Are lactose intolerance and a dairy sensitivity/intolerance/allergy the same thing? Maybe I should first test myself with Lactaid milk rather than regular?

Thanks.

[mle-ii]

Sounds reasonable to me. Though like you said it could just be the lactose. So some sort of lactaid milk would be a good idea.

Lactose malabsorption and milk allergy/sensitivity/intolerance are not exactly the same thing, though they can have similar results.

Lactose needs lactase to digest it since it is a complex sugar and the body digests simple sugars. Without the lactase (which either your body, a bacteria or other produces) the complex sugars make their way to the colon and the bacteria there have a party (produce gas, toxins) plus the complex sugar irritates the colon and can cause the colon to not absorb water as well. And so bad things happen.

The milk allergy/sensitivity/intolerance is usually a reaction to one of the proteins (or other additives) in the milk. Again this causes bad things like the gluten reaction.

[eKatherine]

Dairy-free since Monday 8/7/06. Some symptoms are getting better, but I have nausea every day now. I have coincidentally added more soy, so maybe that's the culprit.

Keep an open mind. It could be a mistake to assume that there is only one culprit. I had to give up dairy and red wine at the same time.

[mle-ii]

Keep an open mind. It could be a mistake to assume that there is only one culprit. I had to give up dairy and red wine at the same time.

Exactly, it's like an onion, layers hiding other layers. In fact I'm betting that some of the things that I thought I reacted to might really have been reactions to other things that I've found recently.

[eKatherine]

Exactly, it's like an onion, layers hiding other layers. In fact I'm betting that some of the things that I thought I reacted to might really have been reactions to other things that I've found recently.

The goat cheese is ok, but the sheep's milk cheese gives me the same symptoms as cow's milk.

[mle-ii]

The goat cheese is ok, but the sheep's milk cheese gives me the same symptoms as cow's milk.

Did you ever get tested for casein allergy? The reason I ask is that goats milk is lower in casein than sheep or cows milk. At least I think that was the major difference with goats milk.

[KerriAnne]

How do you ever sort out such subtle differences (goat vs cow's milk)?! I guess it's just a matter of trial & error. I figure I'll give this dairy-free thing some time (though it's tough...I do miss my cheese!), but if it's not working I may just go back to my GI doc and request a whole panel of stuff to be tested (like the EnteroLab panel). I guess giving up cheese is worth it, if it means I can last a whole day at work without running home!

[CantEvenEatRice]

Kerri,

I can imagine how you are feeling because I often feel the same way. I will feel okay sometimes, but then horrible other times. For the most part, I feel much better than before I started the gluten free diet (3 years ago), but I just don't always feel like everything is right. I have started to notice many other problem foods. I definitely agree trying to go dairy free is a good idea. But I would try to go without all grains for awhile including even corn and rice. It seems that a lot of Celiacs have trouble with all grains, even if they are gluten free. Soy can also cause a lot of probems. But it is difficult figuring out what foods are causing what problems. With some foods, I react pretty quickly, but with others, it happens over time I think and I just cannot pinpoint it. My biggest problem is fatigue so I am convinced some of the foods are causing it. I hope you can figure it out!

:)Noelle

[KerriAnne]

Kerri,

I can imagine how you are feeling because I often feel the same way. I will feel okay sometimes, but then horrible other times. For the most part, I feel much better than before I started the gluten free diet (3 years ago), but I just don't always feel like everything is right. I have started to notice many other problem foods. I definitely agree trying to go dairy free is a good idea. But I would try to go without all grains for awhile including even corn and rice. It seems that a lot of Celiacs have trouble with all grains, even if they are gluten free. Soy can also cause a lot of probems. But it is difficult figuring out what foods are causing what problems. With some foods, I react pretty quickly, but with others, it happens over time I think and I just cannot pinpoint it. My biggest problem is fatigue so I am convinced some of the foods are causing it. I hope you can figure it out!

:)Noelle

Hi Noelle,

Your nickname makes me laugh..."Can'tEvenEatRice!".... sometimes I feel like my body wants no part of consuming food. I actually considered giving up all grains too...corn in particular. My concern is that going dairy-free has been tough enough, so I thought I'd go with one thing at a time. Basically, if I just live on fruits & veggies for a while with a little chicken for some good protein, then maybe my body will calm down. The reality is that dairy-free has just changed my symptoms. Some things are definitely better, but now new symptoms have popped up, though I'm tempted to blame slightly OD-ing on soy lately.

Anyhow, good luck to you & thanks for the post. It seems like we're dealing with some similar issue so keep me updated if you find out anything that helps you, and I'll do the same. I'm going to give myself a full week of dairy-free and re-evaluate...still sick, then I'll try grain-free too. I'm running out of foods to eat!

Take care.

[CantEvenEatRice]

Kerri,

I agree that is it so difficult to cut out so many foods. My absolute favorite food in the whole world was M&M's. When I cut dairy out, I had to give those up! But I did find some dairy free chocolate chips so that helped. I am thinking about trying that Paleo diet. I just printed out a bunch of the recipes on the website. But I cannot imagine only eating meat, veggies and fruit. I at least have been eating potatoes and I think they are fine, but then again I don't really know. I remember in college I used to ask my friends, "Are you tired all the time?" I literally always felt tired even though I was a runner and always very active--just exhausted all the time! I always wished for one day to not have that foggy brain, tired feeling. I definitely feel better on the gluten free diet, but I just don't feel completely healthy yet. I think more research needs to be done about Celiac.

I'll keep following your posts. Let me know how things go.

:)Noelle

[KerriAnne]

The continuing saga of Kerri's health.....

I had the worst day since my diagnosis back in 2004 yesterday!

I had a wedding shower & bachelorette dinner to go to. The shower was fine...I talked with the server about a salad they had on the menu, and everything seemed like it would be fine. Most of the food we got I couldn't eat, so I basically only ate my salad and 2 glasses of wine. When I got home I was still hungry, so I made some brown rice....normally, I'm perfectly fine with that. But I ended up with so much pain, gas, and D that I didn't know what to do with myself. I had about 4 hours between the shower & bachelorette, during which I was hoping to get some work done (I'm trying to write my disseration!), but instead I spent the whole time being ill & trying to figure out where I'd gone wrong. I was going to bail out on the bachelorette dinner, but I really wanted to be there for my friend. We went to a Thai restaurant, and I ordered steamed white rice, and veggies sauteed in garlic. Once the food came, I basically just picked at the rice, but hardly ate much because I was still quite uncomfortable. Finally, I just gave up and grabbed a cab home. Once I got home, I couldn't even sleep because of the pain. What has happened to me?!

This morning I ordered the Paleo Diet book. I don't want to put anything into me right now...yet, I'm starving. I had a LaraBar this morning and it sent me immediately to the bathroom.

ARGH!!!!!!

(Thanks for letting me vent!)

[marciab]

Kerri,

My doctor told me that I had just become overly sensitive to the foods that I ate regularly. And that I had to eliminate the foods I had been eating all the time. And she told me that the key is to add new foods slowly and keep your stomach calm. Go back to safe foods everytime you eat something that hurts your stomach. This allows your digestive system time to heal.

Everyone's safe foods are different. Mine are applesauce, baked potato with EVOO, peas, cooked carrots, asparagus, etc. No foods with skins, no leafy greens, no meats, no chocolate, no nuts, etc. Nothing fried.

I have also learned that I have to rest when I get this way. And avoid stress. (Especially friend's stress since generally they won't allow you to smack their boyfriends)

This usually only takes a couple of days. But you have to stay on this until your stomach calms down. And then I add back home made bland roasted chicken, turkey, cornish hen, etc. Some meat that I know is easy on my stomach. Beef, pork, etc can be hard on your stomach.

At this point, it only takes about 2 - 3 days before I can add the not so safe foods. But go easy, the key is to keep your stomach calm. If it gets upset go back to your safe foods.

My stomach problems are under control for now, as long as I stay away from my trigger foods. I am just working on my sleep / brain issues now.

Good luck .. marcia