Why Am I Still Getting Sick?

[Marie1976]

I've been gluten free for two months after positive endo. I haven't been getting sick as bad as I was before, but for the last couple weeks I've been having, um, stomach problems. Every morning.

Have I not been gluten free long enough? Am I being "glutened"? Or do I have some other non-celiac-related problem?

I had restaurant french fries a couple times but mostly I've been eating at home lately. I do serve gluten food to my husband and two little ones but I use separate dishes and I wash my hands. I've read on this board that my whole kitchen must be gluten free. Is this really necessary in order for me to not be sick?

Thoughts? Opinions? Thanks!

[kwylee]

Most people seem to do better with a gluten sterile environment but if that is not possible, there are probably many tips on the forum to help avoid cross contamination. My husband eats only one type of gluten, french bread, and he is very careful to keep me from getting sick, e.g., he has a special counter top to prepare his sandwiches. I don't even eat bread, but if I did, I'd have a dedicated toaster. He uses different condiments than I do, mine are in a different part of the fridge. We do this so he doesn't forget and contaminate my supply by double dipping from bread to mustard. I don't use sponges, I found they held on to the evil gluten. I use paper towels only; soak and scrub a bit if necessary. And I am an obsessive hand washer now. Our kids are grown and out of the house, and that makes all of it easier.

On the issue of restaurant fries, my guess is they are frying other things, like breaded foods, in there at times. I don't know if I'd ever trust a dedicated fryer that I didn't have my eye on 24/7.

[Korwyn]

Hi Marie,

I've been gluten free for two months after positive endo. I haven't been getting sick as bad as I was before, but for the last couple weeks I've been having, um, stomach problems. Every morning.

Have I not been gluten free long enough? Am I being "glutened"? Or do I have some other non-celiac-related problem?

When I went gluten-free I went fairly strict, but not completely gluten-free house. I got better for a few weeks but then started having issues. I was developing a much higher sensitivity to cross-contamination. Eventually we went completely gluten-free in our house. I don't allow anyone to bring gluten foods into the house except for beer and it stays out of the kitchen or dining area once opened.

We were unable to maintain a dual purpose house safely.

I had restaurant french fries a couple times but mostly I've been eating at home lately. I do serve gluten food to my husband and two little ones but I use separate dishes and I wash my hands. I've read on this board that my whole kitchen must be gluten free. Is this really necessary in order for me to not be sick?

Fries would most definitely be suspect. I got glutened one time by a dedicated fryer. I talked to the cook, and it turned out they had been very busy and had to plate food on another table on the other side of the gluten-free fryers and were passing other fried food (including beer-batter fries) over the gluten-free fryer all afternoon. He said several regulars got sick.

However the other thing that happened is that about 8 weeks after going gluten-free I wound up starting to get worse again. It took a month for me to find out that I cannot ingest soy in any way, shape, or form, nor can I eat pasteurized dairy without getting violently ill.

Once I removed both of those things as well I started improving again. You will experience ups and downs though. Sometimes they may last for a while. It was a solid year before I had an extended period of 'up' days. Now I mostly have up days assuming I stay eating the proper things my body needs in addition to remaining gluten-free/PDF (Pasteurized Dairy Free)/SF.

[Marie1976]

Cross contamination seems to be a real problem for a lot of people on this board. I guess I was hoping it wouldn't be an issue for me. My gastroenterologist actually told me it's OK to eat a little gluten once in a while, like if I go out to eat. Why would he say that? (Regardless, I have not taken his advice, and have only been eating gluten free --unless by accident).

We are already vegan, so I don't want to make the rest of the family be gluten-free too (it's hard enough for just myself). I guess I'll just try to be more careful and accept that I'm going to be sick sometimes...

I had my suspicions about the french fries, I'm going to have to just bring gluten-free snacks with me at all times I guess.

[Korwyn]

My gastroenterologist actually told me it's OK to eat a little gluten once in a while, like if I go out to eat. Why would he say that? (Regardless, I have not taken his advice, and have only been eating gluten free --unless by accident).

I'll be blunt: he is either very ignorant or an idiot. I'm guessing ignorant, hopefully not willfully so.

I guess I'll just try to be more careful and accept that I'm going to be sick sometimes...

This concerns me. You do realize that ingesting gluten can take a long time to heal? Some things I've read have said up to four week to recover from the damage caused by ingestion, but most I've seen tend to say up to two weeks.

If you have an accidental ingestion every couple of weeks you may be not only preventing the healing, but reversing the healing and causing additional damage. I would highly suspect the latter since you are apparently getting enough gluten to be symptomatic.

[txplowgirl]

Cross contamination seems to be a real problem for a lot of people on this board. I guess I was hoping it wouldn't be an issue for me. My gastroenterologist actually told me it's OK to eat a little gluten once in a while, like if I go out to eat. Why would he say that? (Regardless, I have not taken his advice, and have only been eating gluten free --unless by accident).

We are already vegan, so I don't want to make the rest of the family be gluten-free too (it's hard enough for just myself). I guess I'll just try to be more careful and accept that I'm going to be sick sometimes...

I had my suspicions about the french fries, I'm going to have to just bring gluten-free snacks with me at all times I guess.

No.1 NOOO! Your gastro is wrong! No Gluten Period!

No.2. If you are not careful enough you are keeping the gluten antibodies active, therefore you will still be making yourself sick.

No.3. Never trust french fries, even when they say dedicated fryer. They get in a hurry sometimes and use it for breaded things anyway. I've seen that happen.

No.4. You have to be extra careful if you share a home with gluten eaters. Cross contamination runs rampant and if you can't keep yourself gluten free you will stay sick.

I have a habit of repeating myself sometimes I know but it's to try to get you to understand the seriousness of what we have to go through to stay healthy.

[kwylee]

My gastroenterologist actually told me it's OK to eat a little gluten once in a while, like if I go out to eat. Why would he say that? (Regardless, I have not taken his advice, and have only been eating gluten free --unless by accident).

Thank goodness you haven't taken his advice if he knows you are positive for gluten intolerance and/or celiac. You know, if an attorney told you to go ahead and wait one day beyond the last day you could legally file a lawsuit, and your suit was thrown out as a result, we call that MALPRACTICE, and you can recover damages from that lawyer you depended on for expert advice. I not big on frivolous lawsuits, but in blatant cases like this, I'd love to see a little professional liability come into play on such a person. This guy (yes, they're just people, not gods) can do 15 minutes of research any day of the week, in order to carry out the oath, "First, Do No Harm". His should read, "First, don't be an idiot".

[butterfl8]

Have you tried cutting out dairy? You say your having stomach issues every morning, which makes me think breakfast, which could be milk and cereal? The ends of the villi are the part that process the lactose (milk sugar), and they are blunted by celiac damage. My GI doc. told me to hold off on the dairy for several months and let that heal, then try to add it back in after a while. If, that is, you think dairy might be the problem.

-Daisy

[Marie1976]

Thanks, yes I already have cut out dairy. I've been a vegan for about 10 years. Usually when I get sick it's first thing in the morning when I get out of bed so it makes me think something I'm eating the day before. I'm constantly going over what I've eaten. I rack my brain thinking of anything it could be (could it be maltodextrin in the fake cream cheese? the tea I drink before bed? Night cream I may have accidentally gotten on my lips? It's enough to drive a person crazy).

My kids are little Cheerios addicts so it could be the powder that gets stirred into the air whenever I dump a new bag into the tupperware container. It's insane that such a miniscule amount of gluten can potentially make a person sick. I'm so depressed lately. Ugh.

Thank you for all your answers, I think you're right, I need to be much more careful about cross contamination.

[Marie1976]

And I have to give up french fries now? Grr.

[cahill]

And I have to give up french fries now? Grr.

No, you dont have to give up FF ,just make them at home.

This is a vegan recipe site you may find helpful

Open Original Shared Link

[Korwyn]

Thanks, yes I already have cut out dairy. I've been a vegan for about 10 years. Usually when I get sick it's first thing in the morning when I get out of bed so it makes me think something I'm eating the day before. I'm constantly going over what I've eaten. I rack my brain thinking of anything it could be (could it be maltodextrin in the fake cream cheese? the tea I drink before bed? Night cream I may have accidentally gotten on my lips? It's enough to drive a person crazy).

My kids are little Cheerios addicts so it could be the powder that gets stirred into the air whenever I dump a new bag into the tupperware container. It's insane that such a miniscule amount of gluten can potentially make a person sick. I'm so depressed lately. Ugh.

Thank you for all your answers, I think you're right, I need to be much more careful about cross contamination.

Not all tea's are gluten free. I have found a lot of tea's which are not. Barley malt doesn't have to be declared as an allergen. I can't kiss my wife when she is wearing some of her Avon lipstick. The Mary Kay lipstick is OK. As a vegan are you taking any enzyme or vitamin supplements which may contain gluten (wheat starch in the binding agent or gelatin capsules?) Do you take medication or sleep aids?

Any cereal is bad. Like I've said we don't even allow our grandkids to bring any snacks into the house. We provide gluten-free "Cheerios" or other food/snacks for them.

[cyberprof]

Thanks, yes I already have cut out dairy. I've been a vegan for about 10 years. Usually when I get sick it's first thing in the morning when I get out of bed so it makes me think something I'm eating the day before. I'm constantly going over what I've eaten. I rack my brain thinking of anything it could be (could it be maltodextrin in the fake cream cheese? the tea I drink before bed? Night cream I may have accidentally gotten on my lips? It's enough to drive a person crazy).

My kids are little Cheerios addicts so it could be the powder that gets stirred into the air whenever I dump a new bag into the tupperware container. It's insane that such a miniscule amount of gluten can potentially make a person sick. I'm so depressed lately. Ugh.

Thank you for all your answers, I think you're right, I need to be much more careful about cross contamination.

Hi Marie, if you aren't going to make the whole family gluten-free, you could switch Cheerios for a gluten-free cereal like Chex, Envirokids etc. There is a gluten-free cheerios clone that you can get at Whole Foods or natural food stores. Depending on your kids' ages, you could swap it out without their knowledge or enlist their help so that Mom can heal and get well. If the kids are young, they'll grow up not knowing anything different. If they're older, say "Mom rules." It usually costs a bit more, but making small switches like this can help.

Do you cook with wheat flour? I'd recommend using corn starch or rice flour instead of wheat for breading, making sauces etc. Use potato chips or tortilla chips instead of buying your kids Wheat thins or whole wheat crackers. Buy corn tortillas instead of wheat. Use rice pasta for everyone in the family. Buy ready-made wheat pie crusts instead of making your own. Buy ready-made pancakes and waffles. If you're going to make a gluten cake, have someone else cook it at their house or have your spouse/partner mix the cake in the garage or on the patio, then bake it in the oven: The risk is highest during mixing and less CC happens during the baking portion. Gluten flour hangs in the air and then settles in the kitchen on food, dishes, etc. I don't allow wheat flour in my house at all but my DH and DD eat readymade pie crusts (I put the filing in, use disposable gloves and keep all utensiles separate) and bread that you thaw-n-bake: They are not allowed to mix cake or brownie mixes or use wheat flour to make pancakes.

Also, check out the gluten-free Goddess's website. Open Original Shared Link She used to eat meat, but now is mostly vegan and she has heavenly recipies that you can make for the whole family that will make them forget that they like gluten. My DD says her carrot cake is better than the ones I made with gluten and better than store-bought. Good luck!

[Marie1976]

Thanks for the tips, everyone. I'm going to take a closer look at what I'm eating/preparing. My kids are 2 and 4, hopefully they will not freak out if I switch out their precious Cheerios.

I just thought of another possible culprit: Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

[cahill]

Thanks for the tips, everyone. I'm going to take a closer look at what I'm eating/preparing. My kids are 2 and 4, hopefully they will not freak out if I switch out their precious Cheerios.

I just thought of another possible culprit: Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

Some can eat products made on shared lines some can not.

I can not, nor can I eat products made at shared facility.

It is enough CC( cross contamination ) to make me very ill.

[Korwyn]

I just thought of another possible culprit: Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

Yes. Especially as you are in the early stages of healing. It seems like most people become much more sensitive for a period of time when they first go gluten-free and start healing. For some this 'super-sensitivity' decreases but it can last for months or even a year or more. There is a group of us (I'm including myself not necessarily you) who seem to remain 'super-sensitive', sometimes even becoming ultra-super-sensitive. There is someone on the forums (I don't recall who) that I've seen mention that they can't even walk through a bakery section of a grocery store.

Some can eat products made on shared lines some can not.I can not, nor can I eat products made at shared facility.It is enough CC( cross contamination ) to make me very ill.

Ditto. I can not eat most products produced in shared facilities either which eliminates pretty much any Trader Joe's products. I've been super-sensitive to soy as well, and since it triggered neuro and psych issues for me I'm afraid to find out if I'm still soy-super-sensitive. Most TJ stuff is shared with either soy, wheat, or both.

[Marie1976]

Yes. Especially as you are in the early stages of healing. It seems like most people become much more sensitive for a period of time when they first go gluten-free and start healing. For some this 'super-sensitivity' decreases but it can last for months or even a year or more. There is a group of us (I'm including myself not necessarily you) who seem to remain 'super-sensitive', sometimes even becoming ultra-super-sensitive. There is someone on the forums (I don't recall who) that I've seen mention that they can't even walk through a bakery section of a grocery store.

Ditto. I can not eat most products produced in shared facilities either which eliminates pretty much any Trader Joe's products. I've been super-sensitive to soy as well, and since it triggered neuro and psych issues for me I'm afraid to find out if I'm still soy-super-sensitive. Most TJ stuff is shared with either soy, wheat, or both.

OK, I hadn't heard that about being super sensitive in the beginning (I hope it will just be in the beginning). Good to know. And yes, Trader Joe's! A lot of their stuff says gluten free but then shared on equipment blah blah blah. Bummer because I love Trader Joe's! Grrr. I am definitely being "glutened" lately, I just don't know from what, probably multiple things. I did feel better for a while and now it's stomach problems daily and the last few days more anxiety/depression etc. I am ready to scream. I'm sure you all know what I mean. I'm happy I at least have this forum where others can relate and understand the misery I'm going through...

[MissBonnie]

ive been gluten free for 4 months and im still spending days in bed from nausea. its very up and down the healing process. be patient and dont ever think you can just skimp on safety measures to do with gluten. it WILL make you sick. and yes, buy your own butter etc.. this is very important.

[T.H.]

Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

In my experience, anything that says 'no gluten ingredients' is more of a risk, whether or not the equipment is shared. That label says nothing about how they handle avoiding cross-contamination. Considering there are no laws currently in place to regulate what the term 'gluten free' means in the USA (so no real penalties if they make any kind of good faith effort), the fact that a company says 'no gluten ingredients' as opposed to 'gluten free' seems to me to indicate that the risk of gluten cc is likely higher. Just my opinion, though. I haven't really done a lot of looking into it...aside from getting sick a lot on 'no gluten ingredients' type foods, in the beginning of my diet.

I won't eat those ones anymore. Shared equipment is out for me and my kids, too, although my father seems to be okay on many gluten-free shared equipment foods.

[cait]

Thanks for the tips, everyone. I'm going to take a closer look at what I'm eating/preparing. My kids are 2 and 4, hopefully they will not freak out if I switch out their precious Cheerios.

I just thought of another possible culprit: Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

Yes, shared equipment makes me sick. As do my gluten-covered children, sadly. We've been gradually switching things over, and they're actually curious and excited about some of Mama's special food. They're 2.5 and 5. We haven't decided if we're making the house completely gluten-free, but it's been clear that at least cutting down significantly is essential. My kids hate change but love chex. And they're getting used to the new ways of doing things. They now automatically present themselves for cleaning after eating something gluteny, and know that they're not allowed to touch me until they're clean. Good luck.

[come dance with me]

I was told to take my 7yo off all dairy for 6-12 months but we don't have that anyway. Also even though I'm not Coeliac my whole house bacame gluten free when my child was diagnosed earlier this year. I was also told that it can take up to 12 months for her gut to heal (hence 12m off dairy) and the odd attack can happen in that time even if we're strict. We've so far had only one random attack within the first month except when I accidentally glutened her 2 weeks ago. I have a new toaster too in case of cross contamination from the other one.