Why Are Some People Less Sensitive To Small Amounts Of Gluten?

[Guest cassidy]

How come some people seem to do ok with eating just salads or naturally gluten-free food at restaurants or eating off buffets if they just choose meats and salad?

I have gotten sick from so many restaurants and have glutened myself from cc several times. I know I can't just eat something that should be ok without knowing the ingredients and how it is prepared. When I am very careful I feel great; I haven't been glutened in 5 weeks, so I know there isn't some other reason why I'm reacting to certain restaurant foods.

How come some people don't get sick from eating things that I know would make me sick? I wish I could eat out easier, but I have tried and it doesn't work. Do you think these people are still having damage from the gluten they are getting from cc, but they just don't feel bad?

Has anyone gotten less sensitive over time?

I'm going on another trip on Monday and I think I'm gettin scared again. My last trip went well, but I got sick on the trip before that. I get so nervous when I have to trust other people to make my food, especially when I'm staying in a hotel, with a roommate, far away from home. I hate eating with new people at every meal and having to explain why I'm eating special food and not the buffet food they are eating. I really wish I could be just like them and not stand out.

[MurielCooper]

You are not obliged to explain every detail of your dietary needs to your dinner companions,Celiac disease doesn't make for great conversation any way(except perhaps for other celiac's). A simple "this food will make me ill" is all you need to say. If you are staying in a hotel for a few days and eating in their food service,take a moment to go a speak to the head cook about what you need. The kitchen staff do not want to make you ill ,I've been a professional cook for 25 years and have never met a cook who refused to rise to the challange of providing a customers dietary need. But they cannot read your mind,you must ask for somthing do able,keep it simple.Give them a card with guidelines,cooks are nothing if not creative.

Good luck.

[chick2ba]

I am one of the sensitive ones, too. How do you keep from not being poisoned every 4 days??

I am super SUPER careful with everything I touch and prepare but I cannot stay well for more than a week. I live alone, wash my hands constantly, only drink distilled water, wash fresh fruits and veggies with hydrogen peroxide, then scrub with water, keep a detailed food log, no makeup, no wheat in shampoo/toothpaste, no trends in 'other' food allergies, no dairy, constantly call companies and verify gluten-free status, prepare and eat food with vinyl gloved hands.. I even scrub down my entire kitchen and knobs, lightswitces, keyboard, etc.. everyday with gluten-free baby whipes. It seems the more careful I am, the sicker I get.

Something I ate last night got me, and I was still recovering from being glutened two days ago. All I had was gluten-free chicken and washed, steamed fresh zucchini.

It gets so depressing after awhile.. I just want everything to stop.

Is there something I'm missing??

[MurielCooper]

I'm curious to know what you are cleaning with ? Perhaps you are sensitive to that.

You drink distilled water? Why?

Are you sure you mean vinyl gloves,a lot of people have a sensitivity to Latex,perhaps it that.

[Fiddle-Faddle]

I'm one of the less sensitive ones--SO FAR (you never know)--but I don't have an official celiac diagnosis YET, my symptoms didn't appear until my 40's, and I spent my first 30 years eating much less gluten than most people, simply because my mom didn't like bread (unless we were in Europe) or pasta, so I was just used to not eating it, anyway.

One thing I've noticed, and it might just be me, is that my gluten symptoms have been much, much less when my diet was very heavy in raw vegetables, especially greens. (That should teach me to eat healthy!)

One of my friends, who also suspects some kind of gluten sensitivity in her family, swears by a rotation diet. She says this is used to treat mild food allergies. I meant to look into this anyway, as I'm not sure what she means beyond having gluten once every 3 or 4 days so that the body doesn't get TOO sensitive (her words).

Okay, I just googled rotation diet and allergies and came up with a bunch of websites. Here is one: Open Original Shared Link. I never heard of this before my friend mentioned it this week. I have no idea if it's worth trying. Has anybody reading this tried it?

[Ursa Major]

Cassidy, I understand that it is very frustrating. Is it possible for you to get a hotel room with kitchen, to cook for yourself? That's what I've had the last two times I've been travelling, and it was great.

I am one of the sensitive ones, too. How do you keep from not being poisoned every 4 days??

I am super SUPER careful with everything I touch and prepare but I cannot stay well for more than a week. I live alone, wash my hands constantly, only drink distilled water, wash fresh fruits and veggies with hydrogen peroxide, then scrub with water, keep a detailed food log, no makeup, no wheat in shampoo/toothpaste, no trends in 'other' food allergies, no dairy, constantly call companies and verify gluten-free status, prepare and eat food with vinyl gloved hands.. I even scrub down my entire kitchen and knobs, lightswitces, keyboard, etc.. everyday with gluten-free baby whipes. It seems the more careful I am, the sicker I get.

Something I ate last night got me, and I was still recovering from being glutened two days ago. All I had was gluten-free chicken and washed, steamed fresh zucchini.

It gets so depressing after awhile.. I just want everything to stop.

Is there something I'm missing??

You may have other intolerances besides gluten. What you're doing sounds like you're getting extremely paranoid, and all the washing and cleaning and eating with gloves on could be making you ill, all by itself. It certainly would do that to me!

If you live alone you should NOT have any chance of being cross-contaminated inside your own place. Simple washing of fruits and veggies should be okay, distilled water is unnecessary, as is eating and cooking with gloves after washing your hands.

You're eliminating all bacteria in your house/apartment, which will result in you getting more and more hypersensitive to anything and everything, making yourself more ill in the process.

If all you had last night was chicken and zucchini, you could NOT have glutened yourself. It isn't gluten that is making you ill, it is something else.

I am not trying to criticize you. I am concerned as you're headed in the direction of serious obsessive compulsive disorder, and may need counselling to get things back into perspective, before things get worse.

[jerseyangel]

I am one of the sensitive ones, too. How do you keep from not being poisoned every 4 days??

I am super SUPER careful with everything I touch and prepare but I cannot stay well for more than a week. I live alone, wash my hands constantly, only drink distilled water, wash fresh fruits and veggies with hydrogen peroxide, then scrub with water, keep a detailed food log, no makeup, no wheat in shampoo/toothpaste, no trends in 'other' food allergies, no dairy, constantly call companies and verify gluten-free status, prepare and eat food with vinyl gloved hands.. I even scrub down my entire kitchen and knobs, lightswitces, keyboard, etc.. everyday with gluten-free baby whipes. It seems the more careful I am, the sicker I get.

Something I ate last night got me, and I was still recovering from being glutened two days ago. All I had was gluten-free chicken and washed, steamed fresh zucchini.

It gets so depressing after awhile.. I just want everything to stop.

Is there something I'm missing??

Have you considered additional food intolerance? I did well at first on the gluten-free diet, and I am also very careful. After a few months, I began to get sick, and I knew I was not getting any gluten. Perhaps there is something else that you are reacting to? It can be anything--a common food that you eat often, even.

[evie]

[Welcome to the board chick2ba; I have been on the 4 day rotation diet for longer than 4 months, I think it is helping me. I had a LOT of diarrhea THAT LEAVES YOUR INTESTINES OPEN TO LEAKAGE OF TINY PARTICLES OF FOOD TO ENTER YOUR BLOOD STREAM. you divide your proteins into 4 days (some use 7days), also veggies, fruits, non gluten grains if you dare, oils, nuts + any etc food goups you are allowed. So you will have a list of protein, veggies, fruits, grains, oils and nuts allowed for each of 4 days, these will be rotated and you always know what you will eat the next day. Be thinking the night before what you will eat following day, some amy be frozen. I got this from a Dr. I saw many years ago & do not have anything now but thin k if you google it you will come up/ something.

I had bad diarhea for many months, gone now!! I do think it has hleped me not to add to several food allergies besides gluten. Best of luck to you!! evie

[tammy]

Ursula's response sounds accurate, I do agree with her and hope to hear that you are feeling well soon.

[chick2ba]

Thanks for all the support and suggestions...

Ursula, I am so very glad you said I am getting compulsive .. sometimes I do think I am going crazy with it all. Before I lived alone, the apartment was occupied by myself and two other lazy guys who left gluten EVERYWHERE (see scary pictures: Open Original Shared Link ). During school I was sick at least once a week and figured it was just because the place reeked of Gluten, so I tried desperately to keep my pans, fruits/veggies and flours clean. I was hoping the gluten attacks would get better once they left, but no such luck.

I woudn't be surprised to find out I have other intolerances and will look at those other diets (rotation &/or SCD). The odd thing is I can eat quite a few things on the one or two good days with *minimal* problems, then abruptly have a really bad reaction (extreme bloating/nauseous, bowel upsetness + pain, get dizzy and super cold) to the point where I can hardly drink water. The small pinprick DH bumps then start to appear on my hands and elbows by the next morning to confirm gluten.

Can these other 'intolerances' exactly duplicate gluten poisoning? I've experienced dairy reactions before, and they hurt, but are gone by the next day. The gluten ones stand out as being especially severe and lasting for a good 3-5 days. Is there a way to differentiate the two?

Thanks for NOT telling me I need to follow the gluten-free diet closer .. that's all the doctors say.. and then hand me a small list of 'corn, rice, meat, fruit...' as if I don't know.

[Ursa Major]

Ha, the 'scary' pictures look just like what MY OWN FAMILY is doing to me EVERY day. I know I get glutened in my own house, but they don't care, declaring me paranoid when I complain!

You know, I get reactions that are very much like gluten reactions from soy, rice, eggs, dairy, all grains and starches and potatoes as well (as in D, bloating, gas, stomach cramps and joint pain). So, yes, it is definitely possible that you do, too. For each food (or food group) the reactions are just slightly different, but not much.

The odd thing is I can eat quite a few things on the one or two good days with *minimal* problems, then abruptly have a really bad reaction (extreme bloating/nauseous, bowel upsetness + pain, get dizzy and super cold) to the point where I can hardly drink water.

What you don't realize is, that you're probably getting a delayed reaction! So, you have some good days. You eat things you're intolerant to, and feel fine for a couple of days, and then the delayed reaction hits, and you don't connect it to the food you ate two days before.

Sometimes I react to certain foods up to a week later. Also, the reactions I get to foods other than gluten can last a long time, too.

I am so glad you didn't get upset with me for saying the things I did. I was almost afraid to read your response! I am glad you took it for what it was meant to be, helpful advice, because I care.

[gfp]

I'm one of the less sensitive ones--SO FAR (you never know)--but I don't have an official celiac diagnosis YET, my symptoms didn't appear until my 40's, and I spent my first 30 years eating much less gluten than most people, simply because my mom didn't like bread (unless we were in Europe) or pasta, so I was just used to not eating it, anyway.

I think this might have bearing, people who have eaten large amounts of gluten all their life seem to take longer to recover and some never do.

One of my friends, who also suspects some kind of gluten sensitivity in her family, swears by a rotation diet. She says this is used to treat mild food allergies. I meant to look into this anyway, as I'm not sure what she means beyond having gluten once every 3 or 4 days so that the body doesn't get TOO sensitive (her words).

I actually do rotation diet and food combining when I get really bad and indeed this was my first suspicion of wheat years ago before diagnosis and before my mother was diagnosed and is what led to her being tested for celiac disease in the first place. If you are definately gluten intolerant then once a week will not help long term but other things like soy, buckwheat etc. seem better on a irregualr basis.

However overall on the different sensitivity thing I have a few ideas.

Firstly, celiac disease is not a weak immune system, its an overly agressive one. I think the more agressive the immune system the easier to trigger. Likje someone said the other day on another post, its like getting a bit of flu, the amount of virus is immaterial ... your body reacts regardless.

Secondly many people seem to be in denial. Im not saying IBS doesn't exist but many people make excuses IMHO rather than admit they got glutened, at least some of the time. I know I do!

Thirdly we do of course have different sensititivities but I find mine are at different levels.. a very mild glutening from a trace of a product containing a trace of gluten and my intestines might not react or very mildly but the neuro effects don't seem to need as much to trigger. Yesterday I made a chicken pate to which I added some cognac (a good one) and tasted it before leaving it to set. The pate was for my girlfriend not me and I would usually not risk the cognac but I just had a taste. So far fingers crossed my intestines are mostly OK but I was out last night and my friends and girl-friend were constantly asking if I ws OK... no I wasn't I just wanted leaving alone and had brain fog but ....

If I get a small poisioning then I don't get my migranes which all but dissapear gluten-free... and other allergies like hay fever seem related to my glutening. However this is just me, some people might react in the opposite way with bowels reacting on the tiniest trace and neuro needing a bigger trigger....

I think what ursula said onthe dealyed reaction plays a huge part as well. It makes it easy to deceive ourselves that "its just IBS" and we want to believe this, not that we self-harmed, accidental or not.

@chick2ba

There really is no point to being so compulsive and its good Ursula pointed it out.

You are letting the disease control you, not the other way round.

Distilled water is bad for anyone but if you are maladsorbing it is worse because you will flush the vitamins and salts out of your body.

Thanks for NOT telling me I need to follow the gluten-free diet closer smile.gif .. that's all the doctors say.. and then hand me a small list of 'corn, rice, meat, fruit...' as if I don't know.

If you are 100% certain then that's OK but please make sure you haven't got yourself a stock item you manage to skip the suspect item on. I don't think there is anyone on this board who hasn't got home to find they picked up an item with gluten in ... it really is so easy to skim over and see what we want. Not long ago I found some rice noodles with sauce etc. etc. and checked the label twice before adding it to my shopping basket. Got home and showed my girlfriend and she was overjoyed..she really misses that. I cooked them and had the whole dish ready and my gluten-free pulls out the packet from the bin and finds soy sauce on the ingredients!!!!!

How did I miss it? Well just read the silly things thread when glutened... its like spending an hour looking for your glasses which are on your head, finding your keys in the fridge etc. etc. If we are capable of this then we are capable of missing an obvious item on the ingredients.

In the same way a 'safe' food' can be contaminated... just a slip by a human being at the packaging plant etc.

[BRUMI1968]

I am one of the sensitive ones, too. How do you keep from not being poisoned every 4 days??

I am super SUPER careful with everything I touch and prepare but I cannot stay well for more than a week. I live alone, wash my hands constantly, only drink distilled water, wash fresh fruits and veggies with hydrogen peroxide, then scrub with water, keep a detailed food log, no makeup, no wheat in shampoo/toothpaste, no trends in 'other' food allergies, no dairy, constantly call companies and verify gluten-free status, prepare and eat food with vinyl gloved hands.. I even scrub down my entire kitchen and knobs, lightswitces, keyboard, etc.. everyday with gluten-free baby whipes. It seems the more careful I am, the sicker I get.

Something I ate last night got me, and I was still recovering from being glutened two days ago. All I had was gluten-free chicken and washed, steamed fresh zucchini.

It gets so depressing after awhile.. I just want everything to stop.

Is there something I'm missing??

I wonder why you're drinking distilled water (sorry, I didn't read entire post so maybe someone mentioned this). Distilled water has had all of the life-giving force taken out of it by removing any mineral content. You might want to think about drinking spring water or filtered water, and you might think about adding a nice pink salt like Himalayan salt. I'm not saying this would cure your ills ... I just thought you might want to look into it.

[Guest BERNESES]

i'm one of the super-sensitive ones but i'm finding that it's getting better over time. I figured a few things out. eat as few processed foods as possible- I gave up microwaveable stuff like Amy's gluten-free stuff a long time ago. Cook as much as you can from scratch. At first it seems SO time-consuming but after awhile you realize the shortcuts and you get creative and it becomes fun (honestly). And you become proud of your cooking- I love it when my hubby tells me he'd rather eat my food than go out to eat.

Second, the biggest help to me is keeping a food journal. I've done it for the 16 months I've been gluten-free. It helps tremendously because when you are having a reaction, you can trace back one or two days or even a month and see what could have caused it. I write down EVERYTHING that goes in my mouth, a general list of sysmptoms I had or didn't that day and also any new product (like a shampoo, eyeshadow, body wash, new medication, supplement) that I tried. I also give myself a daaily score 1-10 for how I felt that day. At the end of the month I average out the scores and see how my month was overall. It's been really motivating for me because in the beginning, the first three months were 5's and May I hit 8.5. It makes me feel like i am making progress and I am getting better even though it's slow.

As for eating out, I always talk to the manager and since i started doing that about 6 months ago I have had far fewer problems. I've even had chef's come out and talk to me. They really are willing to help.

And the last thing is other potential food intolerances which can be hard to figure out. I've kep this journal for 16 months and I just today figured out (with the help of the people on this board) I can't tolerate legumes (soy, peanuts, beans).

It takes time and it's really frustrating. I definitely feel your pain!