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Am I Really That Sensitive?

Guest BERNESES

By Guest BERNESES
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest BERNESES
Guest BERNESES
Posted

I was just reading the thread about the SCD diet and I've really been trying to figure this out for awhile now. OK- gluten is out, lactose is minimal and soy is minimal. I've tried to see a pettern to the things i'm reacting to and the only one I can find is cross-contamination (like gluten-free but the facility processes gluten on the same lines).

Since I've gone gluten-free a lot of things have really improved:

* depression/anxiety

* sleep

*energy

* gained back all the weight I lost

* no more black tarry stools

* much warmer (used to be FREEZING cold all the time, even on 90 degree days)

* nails started growing again

*stopped bruising

* horrific night sweats mostly gone

But I still have these days where I KNOW I've technically eaten gluten-free, but still have a reaction. Nauseous, exhausted, screaming headache. Usually, I call the company/restaurant and find out there was a cross-contamination risk but that's all I can pin down.

I'm just wondering if I'm in denial about having other food intolerances or if I really am just micro-sensitive to gluten. Any feedback would be aappreciated. I've been tested for other food allergies, but not intolerances yet. I'm just tired of getting what I think is "glutened". :(:(

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CMCM Rising Star
CMCM
Posted

I really think restaurants are a minefield....after all, pretty much the only thing the cook's etc. would know is that you can't eat wheat. Period. They don't really know what gluten is and don't know all the items and names it can hide under. Plus, restaurants use a lot of prepared multi-food ingredients they buy from restaurant suppliers and they might not even know exactly what all the ingredients are. They would not understand at all about cross-contamination...even from a pan or a grill, or utensils. Plus, any CC could be really difficult to pin down. So my conclusion is that if I get out of a restaurant without getting sick, I'm lucky!

We used to eat out quite a lot, and now we rarely do. I think I feel better as a result, although I miss eating out. Depending on your sensitivity level, I'd just say your chances of CC are fairly high in any restaurant, even one that is trying hard to accommodate your dietary restrictions. Expensive restaurants usually do a good job, but the others do not in many cases. :(

tarnalberry Community Regular
tarnalberry
Posted
But I still have these days where I KNOW I've technically eaten gluten-free, but still have a reaction. Nauseous, exhausted, screaming headache. Usually, I call the company/restaurant and find out there was a cross-contamination risk but that's all I can pin down.

Are you sure it's a glutened feeling? I could use those words to describe my migraines, and they are not necessarily connected to gluten for me.

jerseyangel Proficient
jerseyangel
Posted

My feeling on this is that if you find that your reactions tend to result from restaurant eating, then it could very well be CC happening in the kitchen. I don't eat out at all now--and it was something we did every weekend--because I just don't know what is happening in the kitchen. No matter how clear we are with our special instructions, etc., we're still kind of 'at the mercy' of the folks in the kitchen. Not to put down any well meaning chefs, but it's hard enough for us in our own homes! Do you seem to be as sensitive to foods that you make yourself? If that's the case, then it could be other food intolerances. I know that I have become sensitive to a number of things since going gluten-free. I think that I have identified the biggest offenders, but it took 9 months of kind of my own experimenting on myself! I wish I could be of more help--this stuff is just so hard :angry:

Guest Robbin
Guest Robbin
Posted

Tiffany, I have had migraines since I was a teen. I have linked them to aged cheese (cheddar), any wine, MSG, too much salt, and artificial sweeteners (except stevia, of course). I also get them around ovulation (had a hyst. but still have ovaries) So, maybe you have similar problems with these things, as I think they are common triggers. I also believe there is a yeast die-off when we go gluten free which is a contributor to some kind of withdrawal, but that is just my opinion/observation. I've been eliminating grains and starches in an effort to get to the bottom of the problems, and I bought some enzyme supplements yesterday, as I believe that is what the scdiet is designed to do--reduce/find intolerances and build up the lost or diminished enzymes in the intestine. I am just going about it differently, as I am sick of fooling around with the diet business and want to get into the "feeling good business" as soon as possible. Been sick far too long to stand it any longer as I am sure you and everyone else feels that way too! I'm being the "guinea pig" in my house for their sakes as much as mine. I am going today to look for a probiotic to take to encourage the "good bacteria" in my intestine. Hope some of this helps--FEEL BETTER SOON!! :)

Nancym Enthusiast
Nancym
Posted

You might want to stick to a home made, limited diet and gradually try foods. I have found, through trial and error, that chocolate and almonds seem to give me problems too. I'm pretty early in SCD so I shouldn't be eating a lot things I am most likely, but I have a very stable platform of meat & veggies I eat and then try new stuff now and then.

Rachel--24 Collaborator
Rachel--24
Posted

Berneses,

Have you ever tried to stick to a diet of veggies fruit and meat? None of these foods are processed in a plant that also produces gluten. ;)

Maybe if you dont eat out and dont eat processed foods you can feel better...add things back in and pinpoint the foods that are bothering you.

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Guest BERNESES
Guest BERNESES
Posted

Thanks for all your replies. I really appreciate it. i've cut down my eating out a great deal but maybe it will have to go permanently for awhile. The only time I get sick at home is when I eat processed foods- if I cooked my own meat and veggies and rice I generally don't have a problem. I guess I'm just going to have to go back to scratch and start all over again.

Tiffany- for the most part the reaction feels the same every time- nausea, vomiting, night sweats, insomnia, headache, exhaustion and brain fog. If it's CC, it's usually gone within a day or two. If it's a true glutening, it's at least a week. There are very few true glutenings- can't even remember the last one but to many one or two day episodes that still leave me wrecked. I think I'm going to go with what Rachel said for a bit- home cooked meat and veggies and slowly add things back in and see what happens. Thanks everyone, Beverly

slpinsd Contributor
slpinsd
Posted

I am thinking the same thing. Since I was never actually diagnosed with Celiac, sometimes I think it's all in my head. I would start journaling, and you may find patterns- it's not! The one time I broke down and ate an In-N-Out Burger with the bun (I journal), I had 5 DAYS of bowel contractions, reflux, brain fog, fatigue, anxiety-depression like feelings, tired sore eyes, and joint pain in my knees upon waking. Then it was suddenly over on day 6 and I went back to my real self. Then, the other night I accidentally got glutened and I'm on the 3rh day of brain fog, fatigue, eye fatigue, knee joint pain, sleeping through my alarm. Sound familiar to anyone? Also, when I went gluten-free, it took 6 days for my digestive symptoms to subside. I'm wondering how I could be that sensitive, since my blood work IgG was only slightly elevated, and my Enterolab was only slightly elevated IgA. Tomorrow I go to hear what the GI has to say about "seeing flattening of the villi" on my endoscopy.

I also had horrible night sweats which have disappeared after going gluten-free.

tarnalberry Community Regular
tarnalberry
Posted
Tiffany, I have had migraines since I was a teen. I have linked them to aged cheese (cheddar), any wine, MSG, too much salt, and artificial sweeteners (except stevia, of course). I also get them around ovulation (had a hyst. but still have ovaries) So, maybe you have similar problems with these things, as I think they are common triggers. ... Hope some of this helps--FEEL BETTER SOON!! :)

hehehe... haven't had dairy in nearly two years, I drink wine maybe twice a year, avoid *all* artificial sweeteners (and don't use much of real ones anyway), don't often over indulge in salt, and have checked on caffeine and chocolate as triggers, as well as hormones, but the migraines were far too often for that. (It was far more often to feel one than not, but not the really really bad 'must stay motionless in a dark room' variety, but a milder, still disturbing variety.) They've CT'ed my head (to rule out sub-chronic sinus infections) and put me on prophylactic daily treatment, which seems to be making some difference. I also saw an optomotrist, and was prescribed glasses for use at the computer (to correct my astigmatism, but not nearsightedness), which may also be helping the eye pain). I'm hoping to start feeling better! And I hope you're feeling better too!

Tiffany- for the most part the reaction feels the same every time- nausea, vomiting, night sweats, insomnia, headache, exhaustion and brain fog. If it's CC, it's usually gone within a day or two. If it's a true glutening, it's at least a week. There are very few true glutenings- can't even remember the last one but to many one or two day episodes that still leave me wrecked. I think I'm going to go with what Rachel said for a bit- home cooked meat and veggies and slowly add things back in and see what happens. Thanks everyone, Beverly

Outside of the night sweats, my migrains can feel that way (though I almost never vomit period, so it's hard for me to compare symptoms), but Rachel's suggestion is a fabulous one, and it probably will be of some helpfulness! Good luck!

key Contributor
key
Posted

Yup, this is where I am at too! Glad to know I am not the only one that is Up and down! I have a slew of products that I have come up with that may be making me sick, so I am just going to start cooking from scratch. I just don't trust anything right now. It is very frustrating.

Splnd?? I don't know if I got that right, but you sound just like me! This is what happens to me and I am hoping to find the problem. I felt great for four months and now it has been about 5 months that have been more down then up!. Bowel contractions would be what I would describe happening here and are very annoying.

I don't eat meat and won't start. Never have and it doesn't appeal to me in the least. So if I give up dairy, which I think I have more of a problem with Soy. Then I won't have much protein at all. Maybe nuts or combining legumes and rice, but I have kids to cook for and can't just feed them this. My son that is Celiac and two years old is doing much better then I am. He is still small and little, but he is happy and doesn't seem to be in any distress anymore. We eat alot of the same things.

Berneses,

Sorry I am not much help. Headaches are about the only symptom I don't have! Hope you feel better soon.

MOnica

Guest BERNESES
Guest BERNESES
Posted

Thanks everyone- Tiffany- your migraines sound brutal- I hope they get better soon. My sister used to have cluster migraines and a friend of hers gets them so bad that that she has to go to the ER because she can't stop vomiting. They are really, really tough.

I've been keeping a food journal since I went gluten-free about a year ago and there's really no pattern other than gluten. It usually comes down to some vague cross-contamination. I am cooking all my own food from scratch right now and so far so good. Oh- one thing I have noticed is after these 'small" glutenings, I am usually constipated for up to a week. mmm- fun!

I am having my gall bladder out soon (trying to get pregnant and have gall stones) so my primary doctor and my GI think the nausea may have something to do with that. we'll see.

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