How Do You Know It Was Gluten?

[Ksee]

Rather than ask related question in several other threads and hijacking everyone else I decided I should ask this:

I have had a really bad couple of weeks. I thought it was allergy and weather extremes. I've always had this sort of thing, migraines, various autoimmune problems and that could of course be exactly why the last couple of weeks have been bad but how do I know the difference?

Years ago I began having migraines, problems with my pituitary that went undiagnosed then underdiagnosed and then other autoimmune problems began. I was born with pretty bad allergies.

In general I have to say there is improvement because I'm not eating obvious gluten. Before now I ate whole foods, fresh or frozen veggies and fruit, eggs, milk, cheese, homemade yogurt, brown rice, single spices (not blends) and healthy fats. I haven't had much trouble figuring out what was safe to eat and gluten free because eating the way I do is straightforward. I know what is in my food because it's recognizable and I put it there.

So,

What is the best approach to getting gluten out of my life?  

I'm single so I don't share dishes, pot, pans and utensils. Will I need to buy some things new because they have been contaminated beyond what the dishwasher can clean?

Living in an apartment means having your stuff at the mercy of your neighbor's bugs (something I learned the hard way years ago) so I always keep things sealed in airtight containers or bags. Most people who cook and don't do this have all sorts of stuff in their cabinets, refrigerator and freezer that I don't, but every-time something is opened, I know there are unintentional traces left behind.

Do I need to hire cleaning of the areas that could be contaminated like kitchen cabinets, drawers, pantry and surrounding surfaces and carpeting? How far can the contamination travel? 

How do the rest of you know the difference between migraine, brain fog and feeling sick because of mold in the spring or from accidental glutening? I don't doubt anymore that I have a problem with gluten. I just don't know how to tell it apart from whatever else is going on.

[Marilyn R]

Hi Ksee,

 

I think you're doing great!  If you've been eating whole foods for quite awhile, you probably don't need to replace anything.  If you formerly ate wheat pasta or loaves of bread, you would probably want to replace plastic strainers and cutting boards, your toaster and your silverware utensil holder.  (Or give it a good wash.)

 

I gave away my loaf pans, but probably didn't need to.  I'm not missing them though!

 

Your refrigerator and oven are fine, sounds like you seal everything up.  I think you'll do fine,

 

Hope you feel better soon!  

[Juliebove]

When you're not feeling well it can really be hard to find the reason.  Last year at about this time, I thought my allergies were really out of whack.  But this year?  A little sneezing, itchy eyes one day.  Couple of rashes.  Nothing at all like last year were I was so miserable I resorted to buying natural allergy things but they didn't help.  This year I started taking a lot of extra vitamin C.  I suppose that may have helped.

 

Have you considered food intolerances?  I have them.  Can't have chicken, fish or shellfish, lamb, cloves, allspice, thyme, marjoram, mint, eggs, dairy and some nuts.  For me, eggs were the very worst thing.

 

Migraines?  No longer have them.  They started with I took GERD meds.  Any and all of those caused them.  Then they were hormonal.  Period would start and I'd have one.  I was also using some progesterone cream that I probably shouldn't have.  My Naturopath surmised by my age that I needed it  Nope.  I needed estrogen!

 

Might you be taking any prescription meds?  They can cause weird side effects and they can contain dairy or gluten.

[dilettantesteph]

How do you know it is gluten?  It takes experience.  It takes careful attention to your symptoms.  It takes careful elimination/challenge diet studies.  It takes a lot of reading.  It takes phone calls to manufacturers.   There are people who believe that if they don't react to something it can't contain gluten so they will tell you that it has to be something else.  This may be case for the vast majority of celiacs, but not for all.  I listened to these well meaning assurances and continued to try different products in an attempt to figure out what ingredients were the problem.  The fact is that some celiacs react to lower levels of gluten than others.  You can read about it in these two references: Open Original Shared Link

Open Original Shared Link

 

I was lucky enough to have a GI doctor who told me about how some celiacs can react to even the very low levels of gluten allowed in gluten free products.  Now, just because something has been tested to show that it has under 10 ppm gluten does not mean that it contains just under 10 ppm gluten.  It could contain no gluten at all, and is likely to contain much lower levels than tested.   It is still a possibility that it contains just under that amount.  I was very happy to finally find out what going on with my son and I.  We had been sick for many months trying to figure this out.  Finally we were able to start the process of finding a safe diet and improving our health.  Now I know that just because a product is labelled gluten-free didn't mean that it is safe for me to eat it.  I have to try every product individually.  I try to add only one new thing per week because it can take me that long to notice a reaction.  

 

I get accused of scaring newbies.  I don't want to scare anyone.  I wish that there was a way to tell only the more sensitive ones about this.  I know that when I was a newbie, I stayed sick for many additional months because I didn't have this scary information.  Please, those of you who are less sensitive, ignore this.  Don't get scared.  Only pay attention if you need to.  If you aren't reacting to your food you are in the vast majority for whom it is safe.

 

There are others like this too.  We call ourselves super sensitive celiacs.  There is variation even among super sensitive celiacs.  Some need gluten free kitchens and households and have to carefully vet everything that they eat.  Some can eat only certified gluten-free foods.  Some can eat in carefully selected restaurants.  

 

I had a whole variety of symptoms that went away when I first went gluten free that came back as I became more sensitive and had to be more careful about my diet.  What made me think that it was gluten was that it was the same symptoms that had gone away that came back.  Carefully vetting my diet made them go away again.  What made me think it was gluten is that my doctors thought it was gluten.  It sounds like you may have experienced this too since you are already eating whole foods.  

 

 I could have thought that I had an intolerance to tomatoes.  I had trouble with tomatoes from the store so I could have thought that I had an intolerance to tomatoes.  I just happened to be growing some, and I could eat those without any problems.  It could have been something else like pesticides, but at least I know that I can eat tomatoes.  I had problems with cream of buckwheat cereal.  Then I bought that manufacturers whole grain buckwheat and looked through it.  I saw what looked like gluten grains in with the buckwheat.  The box was labelled gluten free.  When I called the manufacturer to talk to them about it the woman who answered said that she would have the person in charge of that call me back, but he didn't.  I wrote them a letter an included the grains that I had found and didn't hear anything back then either.  

 

Have you considered your spices?  If you read old posts here you will come across many that talk of reacting to spices.   https://www.celiac.com/forums/topic/101447-mccormick-spices/page-2

https://www.celiac.com/forums/topic/54553-super-sensitive-celiacs/page-25?hl=%2Breaction+%2Bspices#entry523141

 

If you are using a colander that was used for gluten, that could be replaced, but repeated washing in the dishwasher probably took care of the rest.  I have found in general that it is things that I put in my mouth that make me sick.  That can include toothpaste and hand lotion.  I also believe that I have been bothered by walking through bakeries.  If you have kept your kitchen clean it shouldn't be a problem.  If it's a mess you might want to have someone in to clean it.  I used to bake a lot before my diagnosis and I was concerned about going through the cupboards containing the items I used for that.  When I finally did it, I didn't have any problems.  They had been put away clean and they didn't cause a reaction.

 

Have you tried eliminating dairy?  Many have problems with it.  I have a strange problem with it.  It can eat eggs and milk during the summer when the animals are pasture fed, but not in the winter when they are given a gluten grain containing diet.  It is a strange things.  I didn't have the problem the previous winter with my milk when they were fed grass all winter.  This past winter there was new employee who decided that people wouldn't want to pay the higher prices associated with that so they fed grain and we got sick.  We were sick for months figuring that one out.

 

It can be very hard to tell the difference between a gluten reaction and something else depending on your symptoms.  I have taken my son to his doctor for countless tests to be sure, and I've gone for several myself.  So far everything else has been negative, and our diet choices have proved positive.  I hope you figure things our and feel better soon.

[nvsmom]

A good cleaning of cupboards and cooking areas will probably be enough. Vacuum the shelves, corners and walls and then wipe it down well. That should be enough for food storage areas. You are already keeping your food safely, and I'm sure you wash loose foods (like fruit, veggies, and meat cuts) as well as your food prep areas.

 

You will bring contaminated packages into your house on occassion (think of how dirty the check out can be at a grocery store) but it isn't often dangerous. A bit of flour on a box of Chex will probably not get into your system, but if there is an obvious smear of flour wipe it off of course.

 

I think you are doing really well!  You are more aware of what is needed than most would be. 

 

As for a gluten reaction, I use common sense. I only eat out a few times a year and I don't eat a lot of processed food so I know I'm pretty safe. I have been glutened a few times in my first year: I oredered a supposedly gluten-free meal at a restaurant and had obvious swelling and pain, another time was a "gluten-free" beer that was started from barley, and then I was repeatedly glutening myself with some fries (McCains spicy Xtra Crispy) that I thought I had checked, over a two month period. The symptoms caused by fries snuck up on me and I was feeling worse and worse until I finally found the cause.

 

I have had plenty of times when I get stomach aches, "D", bloating and migraines over the last year. Some of them were from other sensitivities (dairy), some were from eating poorly (bag of chips or M&M's - I deserved those LOL), and other times was just bloat form too many greens. I'm sure once you are satisfied that your home if gluten-free, you'll be comfortable with how safe your foods are. Give it time, symptoms can hang on for a long time.

[Ksee]

Thanks all, so it's more complicated then. I assumed by the fact that it took this long in my life to find the gluten problem that was only found accidentally, that I wasn't super sensitive or it would of been more obvious. But I am super sensitive. At least I am to many other things, like household chemicals, fragrances, cosmetics, lotions and other toiletries.

I have other food sensitivities, scallops in particular is a damned shame. Beef causes lots of problems, as does pork and in the last couple of years chicken too. I have been able to eat homemade yogurt, fresh or white cheeses and eggs without noticing any problems so far. I can get away with beans as long as it's not very often.

Years ago someone got the bright idea to allergy test me. They got half way through an unpleasant process and realized I showed positive in a big way to every single site. That is when they realized I must be allergic to either the skin cleansers, the solutions used for the allergy preparations or the syringes. It was decided to stop and retest me using different processes. I declined to go through that over and over and then to take allergy shots that would never completely rid me of allergies. Maybe it was a mistake. Maybe I would of shown a pattern of allergy to gluten grains then, I don't know.   

 

I bookmarked the links, thank you. I have new glasses today and my fingers still type okay but my eyes are wishing they were closed. I will read those tomorrow.

[Fire Fairy]

Wooden Spoons! If you have any old wooden spoons that were used on gluten foods wood is great about holding onto gluten.   I actually had some wooden spoons made by my great uncle so I had to hand them down to another family member.

 

((((Hugs))))

[Ksee]

Wooden spoons and cutting boards. I use a lot of wood because wood has natural antibacterial properties plastics don't. Wow, you all are bringing up such great issues I hadn't thought of. When I decided to remove the glutens, I didn't know if that was the problem so I gathered them all into a cabinet above the refrigerator to keep from reaching for them without thinking. I haven't thrown them out yet because I'm not sure if I will be asked to challenge (or whether I will agree to that). I am thinking I should gather these other things into that same cabinet and clean as best as possible for now. If I have a deep cleaning done only to go back to gluten for a challenge, I will have to have it done again. 

I can get a few cheap plastics that can go in the dishwasher to use in the meantime.

I call myself someone who is serious about nutrition but honestly I have to be careful not to let that actually mean "kitchen snob" I have mostly avoided plastics, preferring wood, glass and metals. Oh darn it, I just realized how many great wood handled knives I have

I don't know if any of you have done your own skin patch test for allergy? I am thinking of doing that with some of the spices I use often. 

[Gemini]

Thanks all, so it's more complicated then. I assumed by the fact that it took this long in my life to find the gluten problem that was only found accidentally, that I wasn't super sensitive or it would of been more obvious. But I am super sensitive. At least I am to many other things, like household chemicals, fragrances, cosmetics, lotions and other toiletries.

I have other food sensitivities, scallops in particular is a damned shame. Beef causes lots of problems, as does pork and in the last couple of years chicken too. I have been able to eat homemade yogurt, fresh or white cheeses and eggs without noticing any problems so far. I can get away with beans as long as it's not very often.

Years ago someone got the bright idea to allergy test me. They got half way through an unpleasant process and realized I showed positive in a big way to every single site. That is when they realized I must be allergic to either the skin cleansers, the solutions used for the allergy preparations or the syringes. It was decided to stop and retest me using different processes. I declined to go through that over and over and then to take allergy shots that would never completely rid me of allergies. Maybe it was a mistake. Maybe I would of shown a pattern of allergy to gluten grains then, I don't know.   

 

I bookmarked the links, thank you. I have new glasses today and my fingers still type okay but my eyes are wishing they were closed. I will read those tomorrow.

Ksee.......many Celiacs have other allergies and intolerances and I am one of them.  I have seasonal allergies to mold and some tree stuff but I did have allergy shots that have helped tremendously so those are better but not gone.

It all depends on how bad the levels are outside.  This interefers with your digestive tract also and it is not uncommon for those new to the gluten-free diet to have many problems in the beginning until they heal for awhile and then your immune system really starts to calm down.  I have been gluten-free for 8 years and I am still seeing improvements over time.  I think healing goes on for quite awhile because, lets face it, it took a long time for you to become sick and it won't be a quick return to good health.  I have 4 AI diseases in total and they have all gotten a lot better, the longer I am gluten-free.

 

How do I know it's a gluten hit?  It's easy for me as I respond with the same symptoms as severe food poisoning. It has gotten so bad at times that I probably should have gone to the ER for dehydration but I know what to do at home to correct that so prefer to do it that way.  No other hit from anything will give me such severe reactions so I know it's gluten.  Luckily, I rarely take a hit anymore because I am so careful.

 

You have to really make sure you do not become paranoid about it because that's a common problem.  You live alone so that will make things easier.  Anything porous like wooden spoons or bare cast iron pans have to go.  It's a great excuse to go out shopping and buy yourself some new gluten-free kitchen tools. You are a trained nurse so I don't have to explain cc to you.  When in doubt, replace.

 

I think you really will notice that your other intolerances and allergies will ease with time but be prepared for it to take longer than you think.  They may never go away completely but should get a lot better, once you correct your diet and heal your insides. I am an extremely sensitive diagnosed celiac and it has gotten a lot better for me but it has been 8 years in the making.  Forget about time and concentrate on eating well, exercising when you can and not worrying about food in general.  It becomes second nature anyway and you will not remember being a gluten eater down the road.  You may start to really recognize a gluten hit as we generally become more sensitive over time as we heal.

I react more violently than ever now because I have cleaned out my system so even the smallest amount will bring the dreaded results.  It makes it a bigger incentive to stay clean.  I have gotten the largest results from not buying into what the AMA teaches about allergies and intolerances.  They really aren't that good with chronic disease.  Just stay the course and do what has been suggested on this forum and you'll be amazed at what can happen. 

[Ksee]

Thanks Gemini

I thought I was having a bad time with seasonal allergies but then decided I needed to look more closely after reading several threads. I had been patting myself on the back for how easily I removed the gluten from my cabinets. I'm familiar with severe sensitivities to things like peanuts where parts per million can cause anaphylaxis but had not heard this in regard to celiac before. Even if I had, I'm not sure I would of connected woods that had gone through the dishwasher as retaining traces large enough to cause a problem.

I understand physiology, research, treatment and the big words doctors throw around like weapons, but you all have the practical daily living experience in this disease I don't.

Time is another thing I didn't understand. I improved so quickly at first by not adding extreme daily injury, I thought that would continue. It's probably part of why I thought I wasn't super-sensitive. I'm realizing now there hasn't been enough time to make those judgments yet. 

[gatita]

I don't know if any of you have done your own skin patch test for allergy? I am thinking of doing that with some of the spices I use often. 

 

How do you do that? I tried googling once and found nothing. I accidentally gave myself a "skin patch test" after a gluten challenge! I was throwing out some very stale French bread and the crust scratched my arm. I saw my skin turned red, so I picked up a piece and kind of scratched my skin some more with it to see what would happen. It swelled up and reddened for two days. (Because of other symptoms I was eventually diagnosed with wheat allergy... as well as gluten intolerance.)

 

I figure there must be some way to do a skin prick at home. I realize it could be dangerous for highly allergic people though... But my insurance won't cover an allergist.

[Gemini]

Thanks Gemini

I thought I was having a bad time with seasonal allergies but then decided I needed to look more closely after reading several threads. I had been patting myself on the back for how easily I removed the gluten from my cabinets. I'm familiar with severe sensitivities to things like peanuts where parts per million can cause anaphylaxis but had not heard this in regard to celiac before. Even if I had, I'm not sure I would of connected woods that had gone through the dishwasher as retaining traces large enough to cause a problem.

I understand physiology, research, treatment and the big words doctors throw around like weapons, but you all have the practical daily living experience in this disease I don't.

Time is another thing I didn't understand. I improved so quickly at first by not adding extreme daily injury, I thought that would continue. It's probably part of why I thought I wasn't super-sensitive. I'm realizing now there hasn't been enough time to make those judgments yet. 

This is exactly what happens with a lot of people, including myself.  There was extreme, immediate improvement of the acute symptoms very quickly for me but then recovery slows down to a more realistic pace with the chronic stuff.  The stuff that is directly tied to long term inflammation.  You have to be patient and wait for the inflammation to go away before those things disappear.  The very last symptoms I had took 3 years to go away and have not come back.  Yes, that seems like eternity but it isn't so bad when you go further and then look back.  It's worth the wait.

[notme]

you will make small adjustments and get better at this - i started out not really believing that i had to make all these changes in my kitchen - surely not!!  but, yeah, ya do  i didn't believe i had to change my shampoo and conditioner (anything you use 'neck up' - i color my hair but i don't do it in the shower anymore - i must look ridiculous halfway diving into my tub lolz)  lipgloss was another thing i was in denial about.  i use physician's formula and check the ingredients on makeup except eye makeup, because i remove that with baby oil so far so good haven't had a problem with that.  kissing my husband after he is gluten-y is a no-no that i didn't believe.  also, wash hands with soap and water - hand sanitizer is not your friend.  if you have any open jars of jelly, mayo, etc that may have had a double-dipped knife or spoon into should be replaced.  

 

it's a pain at first, but you will adjust and feel better  good luck!