How Intense Does An Elimination Diet Need To Be?

[smeej]

Hey everyone,

I'm brand new here and am probably a long way from a diagnosis. My dad, one of my two cousins, and both her kids have varying degrees of sensitivity to gluten and I've been having trouble digesting things for awhile (especially anything with a skin, like tomatoes, peppers, corn, etc.), so my doctor recommended I try cutting out gluten and see if it gets better.

Perusing this board, it seems like there are a lot of people who have really intense gluten-avoidance techniques, like not letting any into their home at all or having different sponges and soap for washing their dishes than everyone else's.

Does an elimination diet have to be that extreme to give me an answer? Or can I just eliminate directly eating anything with wheat/modified food starch/etc. and have some indication? Is it the sort of thing where even the slightest hint of gluten is going to destroy the whole test, or might I be able to tell it's helping even without being really careful about cross-contamination?

I'm pretty OCD to start out with, so I have to be careful with going to extremes if it's not absolutely necessary. I don't imagine my roommate would be real happy if I told her she had to store her bread outside for a month!

Thanks!

[Bubba's Mom]

If you are eliminating gluten to see how you feel, you have to eliminate it completely. Gluten "light" may still give you symptoms.

I was DXed with Celiac. My lymph nodes were enlarged at that time. Untreated Celiac can lead to intestinal lymphoma. I don't want that! Therefore, I'm super vigilant about even traces of gluten. Once I cut it from my diet I became much more reactive to it, which is usually the case with most people.

There are many threads here about cross contamination and ways to cope with sharing a household with others that eat gluten. If you use the search box near the top of the page you'll get a lot of info.

I don't know if you have to be as vigilant with gluten sensivity/intollerance, so others here could probably answer your question better about how careful you have to be as time goes on.

IMO those with gluten sesitivity/intollerance should be just as careful as a DXed Celiac. It may be the case that those with intollerance or sensitivity are actually Celiac, but they may be in the early stages or the tests just aren't good enough to give good Dxes?

Good luck to you. I hope you get some answers as to why you're not feeling good.

[GlutenFreeManna]

Hey everyone,

I'm brand new here and am probably a long way from a diagnosis. My dad, one of my two cousins, and both her kids have varying degrees of sensitivity to gluten and I've been having trouble digesting things for awhile (especially anything with a skin, like tomatoes, peppers, corn, etc.), so my doctor recommended I try cutting out gluten and see if it gets better.

Perusing this board, it seems like there are a lot of people who have really intense gluten-avoidance techniques, like not letting any into their home at all or having different sponges and soap for washing their dishes than everyone else's.

Does an elimination diet have to be that extreme to give me an answer? Or can I just eliminate directly eating anything with wheat/modified food starch/etc. and have some indication? Is it the sort of thing where even the slightest hint of gluten is going to destroy the whole test, or might I be able to tell it's helping even without being really careful about cross-contamination?

I'm pretty OCD to start out with, so I have to be careful with going to extremes if it's not absolutely necessary. I don't imagine my roommate would be real happy if I told her she had to store her bread outside for a month!

Thanks!

I just wanted to make sure you understand that you will need to be consuming gluten in order to be tested for celiac. If you have no plans to be tested then go ahead and go gluten free. However if you find that gluten does make you sick and you later will want testing then you would need to go back to eating it for 3 months to get tested. Many peopel can not go back to eatign glutne for thetesting becaus eit makes them to sicka nd they are stuck withotu an "official" diagnosis. Just warning you now because it would be better for you to get testing done before you have been gluten-free for very long. The tests can be negative for celiac and you can still be gluten intolerant--in that case the only test is the elimination of gluten.

Now as to your questions about how strict you need to be--

You need to make sure you are 100% gluten-free.

Some people are more sensitive than others.

You won't know how sensitive you are until you eliminate gluten.

Some people can just stop eating obvious gluten and feel better.

Most people need to avoid the biggest causes of cc as well--shared toasters, shared condiments, cutting boards, collanders, scratched up non stick pans, shared cast iron and anything plastic with scrathes or pourous things that are hard to clean.

Many peple do have shared homes with gluten eaters and do okay as long as they have their own gluten-free items and have a designated prep surface for gluten-free food only. Most people also donot allow wheat flour in their home because airborne flour can contaminate all their gluten-free items and you can breathe it in hours after it has been used.

Those are the basics that everyone should do but most people have to figure it out how strict they need to be by trial and error. The more extreme measures are needed by people that are very sensitive to cc. They have figured things out usually by getting sick from somehting first.

The problem comes if you just stop eating obvious gluten and still feel sick. Then you won't know if it is because you are super sensitive and not being strict enough OR if you have issues other than gluten. This is why I reccomend testing as a first step before going gluten-free. Going gluten-free is not a simple one step process of just stopping eating it. You can start by stopping eating it and you may find you need to get more strict if that does not help.

[smeej]

I very much wish I were in a financial position to pay for the testing, but I'm not, and I won't be any time in the remotely near future, so I figure I won't even bother if I don't notice some improvement by eliminating it from my diet.

Maybe I just need to be pointed to an article or something that explains the science of all this, because on the surface, it sounds borderline ridiculous that things like separate sponges to clean non-stick pans (that mustn't be scratched!) can possibly make that much of a difference--and to hear the way people are talking about it here, it sounds like eliminating gluten is the world's great cure-all, fixing everything from athlete's foot to schizophrenia to near-sightedness.

I'm no doctor, but the claims sound paranoid and hyperreactive. I'm not saying they are, but I am saying on the surface it's awfully hard to believe. Everything I've read from places like the Mayo Clinic makes it seem like paranoia about gluten is at least as dangerous as the gluten itself! Are there peer-reviewed medical studies that support this level of intensity about gluten avoidance, or is it all experiential and individualized? My inner skeptic suspects there might be a significant placebo effect.

(Please be patient with me...I may just be in denial that I may have to pay so much attention to what I eat. I certainly don't want to be gluten intolerant!)

[GlutenFreeManna]

Are there peer-reviewed medical studies that support this level of intensity about gluten avoidance, or is it all experiential and individualized? My inner skeptic suspects there might be a significant placebo effect.

(Please be patient with me...I may just be in denial that I may have to pay so much attention to what I eat. I certainly don't want to be gluten intolerant!)

No research has been done because people that are super sensitive to cc would not consent to be in such a study! Not to mention that there are no drugs for celiac and therefore no drug company money to pay for such reasearch.

I'll tell you the closest thing I know to a double blind study from my own experience. Early on when I went gluten-free, we eliminated gluten from our house in every form EXCEPT my husband's breakfast cereal. He was trying to get his cholesterol down and so I agreed to let him continue to eat the "whole grain" gluteny stuff. In the begining he was very careful and always brushed his teeth and washed his face well after eating it, before kissing me goodbye in the morning. Then he got a little careless and started kissing me without brushing his teeth. When he did that I started getting sick again mysteriously. So maybe you are thinking this was just a placebo effect and all in my head right? Well did I mention I was asleep when he was kissing me? He would leave for work at 4 AM and I couldn't get up at that time so he would just come kiss me goodbye while I was asleep in bed. I had no idea he had stopped being so careful about brushing his teeth. I just knew I had started to get sick again and I was frantically looking for a source of cross contamination in my food or anywhere. He went back to being careful and I got better again. Finally, he admitted to me that he had not been as careful as before and had been kissing me sometimes without brushing his teeth. We figured out that the times he kissed me after eating gluten coincided with my mysterious glutenings. Up until then he had not thought it was really nessecery to be that careful.

He didn't do this as an experient but that is how it worked out. And yes this was just my experience and had it not happened to me I may not believe it. Others here have confirmed that they have gotten glutened by kissing a significant other who had just eaten gluten or been drinking beer. It may not happen to everyone but it happens. I can't make you believe it or even tell you if you need to be as careful. I can only pass on my expereience and hope you can learn from it--if it doesn't help you maybe it will help someone else that is a diagnosed celiac but not getting better by just removing obvious gluten.

[Takala]

We are a peer group and some of us have had scientific training.... and restaurant training.... really, there's lots of places to play around with the denial games on the internet besides here, and I can direct you back there if you want to make those types of friends!

The best thing somebody has said to me in the past year was "I just can't keep up with you!"

It's not the OCD, it is how you chose to utilize it.

People vary in sensitivity. And as people who are truly sensitive to gluten, or gluten intolerant and/or celiac, stay off of it longer and longer, they become or notice that they are more sensitive, not less.

Therefore, in the beginning, for some people, a simple elimination diet will reveal enough to be able to make a decision on whether to pursue a stricter diet and household cleansing.

[Jestgar]

I didn't believe the pan thing until I realized I felt ill in the morning after making instant mashed potatoes in my old pasta pot. Got new cookware, and no more problems.

I would suggest you go the paranoid route for a month so you have a clear answer about whether or not being gluten-free helps. After that, experiment on yourself and decide what works for you.

[cait]

For me, getting rid of gluten in food without worrying about cookware was enough to give me an idea that it was going to work. I stopped using the toaster right away, but we used shared cookware until it was clear that that did NOT work for me. I was very careful about food from the beginning, but it took a week or so until my sensitivity was high enough that cookware was an issue. Some people require that level of vigilance from the beginning though.

[smeej]

For me, getting rid of gluten in food without worrying about cookware was enough to give me an idea that it was going to work.

I think that's the stage I'm in. I want to know whether it's going to be worth the considerable time, effort, and money to transition to a gluten-free house before I invest it, so I want to know if I can reasonably expect to notice some difference just by removing obvious gluten, or if there's really no way to know other than to buy new small appliances, cookware, flatware, etc. (obviously the ones I've been using before have been used extensively around gluten) from the outset.

I don't think I have a lot of symptoms in the first place, and I don't notice what symptoms I do have getting any better or worse in response to specific foods, but largely because so many people report it to have cured so many things, it seems like a lot of doctors (including mine) are saying lately, "I dunno. Try cutting out gluten. See if that fixes it," as a panacea so I am, but I'm just trying to figure out how strictly I have to do that to see if it helps.

For those of you who self-"diagnosed" via elimination diet, how strict were you from the beginning and how long did it take you to feel noticeably better? Honestly, I don't care much whether I ever have a doctor's diagnosis. I just want to be able to tell if something actually helps me feel better.

[Fairy Dancer]

I was fairly strict although at the beginning I did ease into it and there were a few accidental glutenings. But as I live alone and needed some new kitchen pans etc anyway it wasn't too hard to make the switch over.

In the space of 3 or so months I have gone from hardly being able to get out of bed most days to having good energy levels. The vertigo, fatigue and constant dizziness I was experiencing have gone and the IBS symptoms have greatly improved. The constant hang over feeling I had has also gone. I feel well 98% of the time. There are still some days I feel a bit off but I am still giving my body time to heal itself and am working on improving my fitness levels as well.

There were also some unexpected changes too. My depression and anxiety have virtually vanished. So much so that I am now weaning off of my anti depressant medication. I had been on them for 10 years for chronic depression and for the first time in all those years I don't feel depressed at all.

I also seem to heal much faster (I had tended to be a bit of a slow healer previously) and the hard skin on my feet has gone as well (it got quite bad at one point lol). My nails are also in better condition too.

Lots of little oddities that seem to be correcting themselves since I went gluten free. I presently eat a modified version of the paleo diet. I eat no grains or grain produce (except the occasional portion of white rice) and limit legumes (I only like garden peas anyway and whilst I will eat peanuts they are not one of my favourite nuts). I avoid foods with added sugar (except as a treat now and then) and I don't add sugar to anything myself or use artificial sweeteners either (I drink mostly water, water with freshly squeezed lemon or lime juice or coffee rather than soda or cordials). I also limit processed foods to treats only (as long as they are grain free) and stick to a mostly whole foods diet based on meat (but not processed meats or meat products...ie bacon or packaged sandwich meats), fish (as long as they are low mercury), nuts, dairy, starchy tubers, fruit and vegetables.

It seems to be helping. A lot! It is nice to be able to function again and I wouldn't return to my old diet if anyone paid me lol. I don't miss feeling like death warmed up and I don't miss the foods I used to eat as there are plenty of delicious foods that I can eat which don't make me feel unwell.

Hope you solve your issues.

Please excuse my typos as my glasses now feel a bit too strong for me so I need another visit to my optician I think. I have a convergence insufficiency caused by weak eyes muscles for which I need a prism in my glasses. I think I need a new prescription cause I can see better without the glasses but not well enough yet to do fine art work etc without a bit of help lol.

[GlutenFreeManna]

I think that's the stage I'm in. I want to know whether it's going to be worth the considerable time, effort, and money to transition to a gluten-free house before I invest it, so I want to know if I can reasonably expect to notice some difference just by removing obvious gluten, or if there's really no way to know other than to buy new small appliances, cookware, flatware, etc. (obviously the ones I've been using before have been used extensively around gluten) from the outset.

I don't think I have a lot of symptoms in the first place, and I don't notice what symptoms I do have getting any better or worse in response to specific foods, but largely because so many people report it to have cured so many things, it seems like a lot of doctors (including mine) are saying lately, "I dunno. Try cutting out gluten. See if that fixes it," as a panacea so I am, but I'm just trying to figure out how strictly I have to do that to see if it helps.

For those of you who self-"diagnosed" via elimination diet, how strict were you from the beginning and how long did it take you to feel noticeably better? Honestly, I don't care much whether I ever have a doctor's diagnosis. I just want to be able to tell if something actually helps me feel better.

You don't have to spend money on new appliances or cookware right away. You could just avoid using them for a while. At first I did not replace anythign but just did not use anything with a high potential to cc--I didn't eat gluten-free bread so didn't need to use the toaster (you can also go teh route of getting toaster bags but those are expensive--a cheap toaster would probably cost less), cooked all my meat on foil or parchement paper in oven instead of my scratched up non-stick, cut things on the cutting boards with a paper towel down or cut on ceramic plates instead, drained my gluten-free pasta with a lid on the pot instead of the collander that had a thousand little holes that could be hard to clean all the gltuen out of. It's not as convienient to do the extra steps of putting down barriers but it would let you do a completely gluten-free test diet without buying new stuff. You should not need to repalce your cutlery or your dishes unless they are plastic or wooden and all scrathed up. Any stainless steel pans should be okay if you just scour them clean really well.

[mommida]

Keep a food journal.

It can help pinpoint hidden gluten or cross contamination for gluten.

It can help track down reation too. i.e. An eosinophilic reaction occurs for 12 days. A trial is a pure form of the food for 3 days, and then you wait for a 2 week period. Mentally you would be hard pressed to remember back 2 weeks what you ate.

[anabananakins]

I tested negative to celiac, but was encouraged by my doctor (and from posts I'd read here) to go gluten free.

I didn't throw stuff out immediately, but it took only 3 days of being strictly gluten free (in what I ate) for me to feel amazingly better and it got chucked after that. I gave a bunch of stuff to friends, and replaced it as and when I could (a collander and plastic chopping board really aren't expensive, I could wait for a toaster since gluten free bread wasn't worth eating anyway!)

It sounds like we think it's a cure-all for everything, but believe me, when you feel really good for the first time ever, you feel like it's a miracle cure. To have many random things resolve that in themselves weren't necessarily terrible but in combination really dragged me down was enough to devote me to being careful. And once I stopped having a permanent stomach ache - I didn't realise that the low level yucky pain in my stomach wasn't normal until it went away - then I got more and more careful with what I ate.

I didn't believe I was as sensitive as people here until I ate fries that were cooked in the same oil as a breaded product. Aw man, that was bad. I also though that using a toaster that looked clean would be "ok". It really wasn't. But you learn this stuff as you go along.