Gluten Free For Me? Or Am I Just Off My Rocker..

[zergcoffeebean]

Hello Everyone.

I've been reading this community for quite some time. Since I decided to go gluten free actually. I just want to take a moment to thank you all for your informative posts and kind words you have given others.

Before I really get into things, I should probably give you all a bit of background information.

I'm 27, I live in Canada. I recently left an abusive relationship. I have been getting migraines since age 12, had them chronically since age 21. I was diagnosed with IBS at age 16 after a colonoscopy and endoscopy revealed no problems. I have been very tired, fatigued, brain fogged, and had sore joints and muscles even without activity for years. And it just gets more and more severe. I was diagnosed with Fibromyalgia a year and a half ago now. A year ago now I got a anti-biotic related infection of the large bowel, the ER doc thought it was CDiff, but did not preform any labwork. I recovered after about 2 weeks on a liquid diet and no anti-biotics. Since then my IBS became extremely sensitive and I seemed to react to so many different things that didn't bother me prior.

My previous doctor (before I left my abusive spouse) asked me if I had ever been tested for Celiac. I have not. I did some reading on it, and after a bad flu (which had me pretty much just ingesting apple juice for 3 days) I decided to Gluten free, as when I started eating normally again, I got IBS attacks from hell, and was in pain 24/7. I spend a lot of my time in pain, but the amount was just... unbelievable. I thought I had an infection.

He was going to test me for it, but after being gluten free for 3 weeks, it was unbearable to eat gluten, so I did not.

After that, I felt amazing. My Fibro-fog disappeared, IBS seemed non-existant, and I was getting fewer migrines and they were less intense, my body did not hurt as much, and I was sleeping better. So I finally felt well enough to leave my abusive situation. I left. I'm living with my family now (5 other gluten eaters when before I only lived with one).

I've been gluten free for 3 months. And now it really feels hit or miss. I'm ravenous most of the time, and nauseated otherwise. I can't seem to eat enough, I've lost a lot of weight, and I'm a small person to begin with. I keep getting insomnia, and sleep is seems very deep (not restful deep, but I am practically dead deep), but when I wake up my muscles are all stiff and sore again. I'm not sure if I'm in a fibro-flare up or if I've had gluten. There aren't any digestive symptoms, save for the nausea. Sometimes I want to cry because things don't seem to be getting better and I don't know what to do. I also have a very limited budget, I am unemployed and have been for some time due to disability. I live with my parents again who are for lack of a better phrase, dirt poor. I get $200 a month in support money but it isn't much.

Misciallanious info:

I've had low iron since I was 12, nothing seems to bring it up.

I get migraines every 2 days or so, sometimes more often.

I am extremely sensitive to light, sound, and smells. I avoid most things because of this.

I have been lactose intolerant since age 15.

So I guess my question is, is gluten-free actually helping? Should I keep doing it? Does it get any better? Anyone else in the same boat/ocean want to give me some tips or something? Is there something else I should be doing?

Thank you for reading.

[Skylark]

I'm so sorry to hear how sick you are. It sounds awful.

The one thing that sticks out to me in your story is that you felt better eating gluten-free, moved out, and are sick again. It must be hard to avoid cross-contamination with five gluten eaters and that may be part of the trouble. Everyone reacts to small amounts of gluten differently and not everyone has a lot of stomach/bowel trouble with small amounts of cross contamination.

I'm also wondering if something else in your diet changed when you moved? Think about other major food allergens like nuts, peanuts, fish, soy, shellfish, eggs or milk (not lactose but casein). Casein and soy seem to trouble a lot of people around here. Other people have trouble with nightshades (potato, tomato, and eggplant are the main ones) or MSG.

I'm curious to hear what other people think. I had a lot of trouble before I went gluten-free and if I get into gluten, but nothing as obnoxious as FM.

I wanted to edit and add that when you look at the medical literature "ideopathic anemia" (low iron and red blood cells for no good reason) is pretty strongly associated with celiac. Being gluten free probably really is helping you and not just a coincidence.

[mushroom]

The first question that comes to mind is how are you managing your gluten free eating with all that gluten around? Do you have your own dedicated gluten free areas of pantry and refrigerator, your own tub of spread, your own jars of PB and jams, or are you sharing them with others? Sharing is impossible because putting a gluteny knife in a jar will contaminate the whole thing. Gluten flour flies everywhere and settles on everything. Gluten settles into cracks in nonstick pans and clings to colanders, wooden and plastic spoons, wooden cutting boards, cast iron pans, barbecue grills, toasters. Unless your family can accept that you must have your own supplies you cannot remain gluten free in such a situation.

I realize that because of your financial situation you are probably between a rock and a hard place, but you are going to have to enlist your family's cooperation in keeping you gluten free or you will be sick all the time. That's the sad truth of it. Read as much as you can on here about how to decontaminate an area of the kitchen and insist that your family respect those boundaries. If necessary, keep your supplies in your room so they don't become contaminated. Always wash your hands before handling your food because all knobs and door handles will have gluten on them. Keep your own towel and dish cloth. It is very hard, but it can be done.

I wish you nothing but the best in your attempts to stay gluten free {{{hugs}}}

[zergcoffeebean]

The one thing that sticks out to me in your story is that you felt better eating gluten-free, moved out, and are sick again. It must be hard to avoid cross-contamination with five gluten eaters and that may be part of the trouble. Everyone reacts to small amounts of gluten differently and not everyone has a lot of stomach/bowel trouble with small amounts of cross contamination.

I keep thinking that it is this that is the problem. I make all my own meals save for supper, which my mother usually makes. At first the meals seemed fine, but as time goes by I seem to be getting sicker. Perhaps it is my family being more careless and/or it is the cookware they use. My mother usually cooks with a non-stick pan, a nice big one with handles on each side. However my dad sometimes prepares a meal for the rest of the family, hamburger helper, which my mother and I don't eat. (My mother eats something closer to my diet due to weight, eating more whole foods seems to make her feel better, but she isn't gluten-free. It's just dinner that is gluten-free.) So that hamburger helper can stay in the pan? I considered this. But (long story short, before I left my ex, I visited my family in early march in which I ate in much the same manner, that was when I started feeling so much better due to gluten-free diet) like I said, it seems as though people are either getting careless or there is something else at work here.

I purchased a small set of cookware and dishes and utensils for my own use, I have yet to clean them and store them. I have a designated "me" cupboard in the house. I'm confident it will stay gluten-free, but the rest of the kitchen will not. I will try to impress upon my family to use only certain areas for gluten product. As things like breadcrumbs and sauces seem to get everywhere. (With a 10 year old and an 8 year old stuff seems to get everywhere.) Getting cleaned and set up seems to be such a difficult thing to do right now because I'm so tired. But I will be diligent, now I just need some sleep. Thank you for your insight.

I'm also wondering if something else in your diet changed when you moved? Think about other major food allergens like nuts, peanuts, fish, soy, shellfish, eggs or milk (not lactose but casein). Casein and soy seem to trouble a lot of people around here. Other people have trouble with nightshades (potato, tomato, and eggplant are the main ones) or MSG.

I have started eating a lot more dairy. Not a glass of milk, but things like yogurt. I actually eat a lot of that, I'm not sure how I would do with out it. When I first started the gluten-free diet, I was eating a lot of hummus, but it was giving me gas and making me feel really bloated and sore. So I haven't had any bean/legume stuff since. I don't eat peanuts because I don't like them. But I do have almonds, a couple of servings every day. I typically have 2 eggs every 2 days or so. I have shrimp once or twice a week, depending on what my mother makes for dinner. I don't have any soy, if I can help it (bean/legume avoidance). I haven't really eaten much for potatos or tomato, and I haven't had an eggplant in years. We do eat red peppers a lot though.

If I were to cut out yogurt, what else should I have to replace it? I'm unsure of what to do about that. Replacing one food for another which is much more expensive seems so huge, as I have little cash.

and if I get into gluten, but nothing as obnoxious as FM.

As far as I can tell, when I ingest gluten, I get bloated. But sometimes it seems so minor, and I can't always tell what it's from. I get kind of sleepy feeling, but again, that happens a lot anyway. Really the telling sign is coma sleep. I call it coma sleep because I seem to sleep deeply, nothing can wake me, and I get night sweats. Really really bad night sweats, where my whole bed is soaked. Lately I've had the sort of coma sleep, but the sweating isn't as severe. So maybe I'm getting glutened, but it's happening often, so my system isn't as "shocked" when it does happen. I sometimes get sudden fibro pain and insomnia, but when you've been having that happen all week and all last week it gets hard to tell where it's coming from. I kinda just feels like it's always been there. Even though I know it hasn't. So maybe I'm getting glutened, but it's happening often, so my system isn't as "shocked" when it does happen. Like maybe it's been happening every couple of days instead of every week or two?

I wanted to edit and add that when you look at the medical literature "ideopathic anemia" (low iron and red blood cells for no good reason) is pretty strongly associated with celiac. Being gluten free probably really is helping you and not just a coincidence.

I don't think it's a coincidence, or at least I really hope it isn't. I will look that up. Thank you.

The first question that comes to mind is how are you managing your gluten free eating with all that gluten around? Do you have your own dedicated gluten free areas of pantry and refrigerator, your own tub of spread, your own jars of PB and jams, or are you sharing them with others? Sharing is impossible because putting a gluteny knife in a jar will contaminate the whole thing. Gluten flour flies everywhere and settles on everything. Gluten settles into cracks in nonstick pans and clings to colanders, wooden and plastic spoons, wooden cutting boards, cast iron pans, barbecue grills, toasters. Unless your family can accept that you must have your own supplies you cannot remain gluten free in such a situation.

I have my own butter, my own apple sauce, my own syrup, and those things. I don't have my own space in the refridgerater. I have my own tiny shelf in the pantry cupboard but it's shared with their baking things, pancake mix and such. I share salt and pepper, seasoning salts. My family doesn't use flour, but they keep it in the same cupboard as my foods. My mother cleans all the vegetables in the colander in the sink, and uses plastic spoons for cooking. She cuts all the food on the counter, but cleans it before hand. Is that not good? I'm not sure how much gluten can stay on a countertop.

I realize that because of your financial situation you are probably between a rock and a hard place, but you are going to have to enlist your family's cooperation in keeping you gluten free or you will be sick all the time. That's the sad truth of it. Read as much as you can on here about how to decontaminate an area of the kitchen and insist that your family respect those boundaries. If necessary, keep your supplies in your room so they don't become contaminated. Always wash your hands before handling your food because all knobs and door handles will have gluten on them. Keep your own towel and dish cloth. It is very hard, but it can be done.

Wow, yeah. I can see that. I have tried to tell them all, but my parents are always like "well the kids are boys, they're just little, they will not be able to follow those rules." Sometimes talking to them is like talking to a broken record. I'm also convinced that going gluten-free would make my mother so much healthier than she is, but they wouldn't be willing to spend money on that and my mother would decide after feeling better that it wasn't because of the gluten-free diet, and just stop. It's really frustrating.

For getting gluten out of cloth, does it have to be bleached? Hot water? or is cold water sufficient?

Thank you both for your replies.

[Skylark]

I can see some problems. It does sound like you're dealing with constant, low-level gluten. You MUST find cupboard space away from baking mixes and flour. This is not optional, even if it means keeping your food in your room. There will be loose flour in the pantry getting on your stuff. Also, a lot of seasoning salt mixes have small amounts of flour in them. It helps brown meats and keeps the mix from clumping. Check the label on all your mom's condiments and replace them with gluten-free versions as you can afford it. Normal cleaning on hard surfaces like counters has always worked out fine for me, and I throw all my dish towels in a warm water wash after family who eat gluten visit. You might provide your mom with a stack of clean rags or inexpensive dish cloths for counter-cleaning (cheaper than paper towels) and make sure they get washed frequently.

You really should try eliminating dairy for a couple weeks and see if you feel better. You can get by for a couple weeks eating a lot of rice, fruits, and vegetables. You'll be OK as far as protein with your eggs and almonds. I've gotten big bags of nice, fragrant, brown bulk basmati rice at Indian stores for way cheaper per pound than the tiny bags of brown rice at grocery stores. Bean-zyme might help with the legumes. It's cheaper than Beano and gluten-free. I find in-season fruits and vegetables to be pretty affordable and bananas and apples are my grab-and-go snacks of choice. Bananas are filling, healthy, and even come in their own "wrapper" to prevent CC. Do you have any farmers markets or roadside stands nearby? Also, make sure your almonds are a brand that doesn't get cross-contaminated (Blue Diamond is good), buy them in the shells, or wash them really well. If you don't mind cooking, sometimes you can find packages of chicken legs or drumsticks really cheap at discount grocery stores.

[zergcoffeebean]

I can see some problems. It does sound like you're dealing with constant, low-level gluten. You MUST find cupboard space away from baking mixes and flour. This is not optional, even if it means keeping your food in your room. There will be loose flour in the pantry getting on your stuff. Also, a lot of seasoning salt mixes have small amounts of flour in them. It helps brown meats and keeps the mix from clumping. Check the label on all your mom's condiments and replace them with gluten-free versions as you can afford it. Normal cleaning on hard surfaces like counters has always worked out fine for me, and I throw all my dish towels in a warm water wash after family who eat gluten visit. You might provide your mom with a stack of clean rags or inexpensive dish cloths for counter-cleaning (cheaper than paper towels) and make sure they get washed frequently.

My family uses Hys Seasoning salt, and Montreal steak spice sometimes (clubhouse brand I believe). I've read both of the labels, they seem fine. And when I was first going gluten free they were using that and I felt better. Can MSG sometimes be a problem? (I hope not, I love that stuff).

We have lots of kitchen cleaning cloths. I find though I have to pull a new one out every time I cook or clean, because I don't know what the other ones have touched. I think I'm good in that regard. I'm not sure how to store them so they don't get contaminated. I maybe just have to keep grabbing a new one. Thank you for your suggestions. I will be switching up my food storage.

Quick question though. I have some buckwheat cereal and brown rice cereal. In addition to the bag it came in, I also store it in a resealable plastic bag. Is that sufficient to keep the possibility of cross-contamination low? Or should I get some food storage containers?

My family uses a salt and pepper shaker. Should I obtain my own of these, or is using the family ones ok?

You really should try eliminating dairy for a couple weeks and see if you feel better. You can get by for a couple weeks eating a lot of rice, fruits, and vegetables. You'll be OK as far as protein with your eggs and almonds. I've gotten big bags of nice, fragrant, brown bulk basmati rice at Indian stores for way cheaper per pound than the tiny bags of brown rice at grocery stores. Bean-zyme might help with the legumes. It's cheaper than Beano and gluten-free. I find in-season fruits and vegetables to be pretty affordable and bananas and apples are my grab-and-go snacks of choice. Bananas are filling, healthy, and even come in their own "wrapper" to prevent CC. Do you have any farmers markets or roadside stands nearby? Also, make sure your almonds are a brand that doesn't get cross-contaminated (Blue Diamond is good), buy them in the shells, or wash them really well. If you don't mind cooking, sometimes you can find packages of chicken legs or drumsticks really cheap at discount grocery stores.

I love bananas. I used to hate them, but since going gluten free I can't get enough of them.

Going dairy free will be a challenge. I love yogurt. I have checked the ingredients and there is nothing in them that raises alarm. I only eat plain yogurt. Does eliminating dairy mean no goat milk/cheese/yogurt as well? Or is it just of the cow variety that has to be avoided?

I'm not sure about farmers markets. We have a local market, called the red barn or something. But the nearest one is in Victoria, which is kind of a long bus trip. Unfortunately everything here (sooke) seems to be priced like a souvenir gift shop. But I rarely have the energy to go to town. It would be possible for me to go there every 2 weeks or so. I don't think any more frequently is possible.

I typically have to buy nuts in those bakers packages. As I don't trust the bulk bins. The ingredients doesn't list anything other than almonds. So I'm not sure. Is there a special way of washing almonds?

Thank you again for your suggestions, I will check out this blue diamond brand.

[Skylark]

The thing I'd be afraid of in a pantry with baking mix is flour on the shelf, since there's almost always flour on the outsides of the boxes. Set your cereal down and there is flour on the bag. Pick it up again and there is flour on your hands and now you open the cereal to pour.

As far as towels, there is no harm in washing them a lot! May as well keep grabbing a fresh one and help your mom wash. As you say, who knows what she wiped up last?

With the dairy, it's up to you how you want to test. To my way of thinking, if you go off it completely you'll get the clearest answer. I have gotten really confused by delayed reactions otherwise. Two weeks is the time you see on allergist websites. If you feel better, adding goat milk/cheese/yogurt back first is a great idea. Some people tolerate goat dairy better than cow. When I couldn't eat casein for a time, I couldn't eat goat either but I lucked into some really good Manouri cheese made from sheep milk that worked.

As far as nuts, I wish I could get better information. I was getting sick from mixed nuts, but not Larabars or other gluten-free bars with a lot of nuts. I couldn't figure out what was happening because if I'm sensitive to nuts I should react all the time. I finally found someone on a forum somewhere who had posted that sometimes they put flour on the conveyor belts that handle seeds and nuts to absorb the oil and keep the nuts from clumping. He said it was a particular problem with sunflower seeds and baking nuts that are not salted. I have NO IDEA whether this is true, as I haven't been able to find more information. The only thing I've found is on the Emerald website, which says lot of their Emerald brand nuts can be CC from other snacks. They say they clean the lines by GMP when they make their Blue Diamond brand almonds to minimize CC. Since then, I have bought nuts in the shell like pistachios, or brands like Blue Diamond who try to limit gluten contamination and I have been fine. I've heard other gluten-free people say they wash all their nuts. I imagine running water would do the trick, since you're just trying to make sure there is no CC but maybe someone else knows more.