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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Only Gluten-Free In The House Is Me, And They Don't Care
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15 posts in this topic

Hey all...

So I'm recently self-diagnosed as of the last week of January of this year with the help of a blood-cousin who posted something about being glutened. I followed up on it and turns out I had the same general symptoms as one with Celiac or gluten intolerance. So I cut gluten out of my diet and within 3 weeks I was amazed. I could stay awake all day without taking a nap, I didn't need to worry about where the nearest bathroom was, I could sleep through the night without worrying about having to use the bathroom, the extreme gas and gas cramps I got disappeared. I was happy, no longer depressed or irritated or anxious, and I was healthy.

For those first 3 weeks my mom was excited that I was finally feeling better, and we had gluten free dinners all the time (I'm a full-time student at college so I was on my own for lunch and breakfasts). Well, now it's March and my mom has lost her enthusiasm about me feeling better. It's turned into an all-out war whenever we need to go grocery shopping or cook meals. For the past couple of weeks it's been, "Why should I have to cook for you? You're an adult, cook it yourself." Yeah, I get the reasoning behind that, except she's still cooking dinner for the REST of the family. Is it really that hard to use normal salt and pepper and garlic seasonings instead of the store-bought mix (that has wheat in it)? I don't know. I feel like all of a sudden cooking gluten free has become too difficult for her to do... but I also feel it's unfair because she went through a brief stage when she thought she was allergic to peanuts and threw out everything containing peanuts in the house, including my gluten-free peanut butter cookies I had made for myself, and made everybody eat peanut-free for 2 weeks.

It's just really tough to be told that even though you're living with your parents because they didn't want you to have to support yourself while going to school, that they don't care enough to include you in the one meal the family eats together a day. I feel completely separated from my family now. I can't eat dinner with them because "it's too hard" too cook gluten-free, they're telling me to cook for myself (they made it very clear they weren't going to help cook at all), when every time I cook something more complicated than boiling water I set it on fire! (Salad, ramen, toast, hashbrowns, fish, hamburger, stir fry... there's more but those were the most traumatic >.<) So... Idk. It doesn't help that I got glutened yesterday and am all sorts of irritated and depressed today, but it makes me just want to move out for the last 3 years of college, since it's even a fight just to get gluten-free ingredients to cook my own food. Although, I don't know how I'd move out since I haven't been able to get a job up here (not many people want to hire a full-time student that's also doing directed practice for 40 hours a week).

Anyone have any advice on how to at least convince my parents to get some gluten-free ingredients while they're out shopping? I usually try to go with when they go, but since my mom got a new car she's been going while I'm in my morning classes. Their biggest argument is that it's too expensive, or too hard to find the ingredients, so I end up with Thai Kitchen instant noodles, a package of white rice, a bag of Cuties oranges, 5 cans of Progresso gluten-free Clam Chowder, and pre-formed processed hamburger patties (which I can't eat because they're processed in a facility that also processes wheat products). Sorry this is so long, I just needed to vent and ask for some advice. :unsure:

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Hi- I'm so sorry you are having a hard time with your famiy. It is tough enough to go through this change to gluten free eating anyway, without throwing in lack of support from your family, particularly if you have to share a kitchen with hardened gluten eaters.

I'm not sure I can give you any particular advice about handling your Mum, other than to try to stay sweet with her, and to gently keep trying to educate her. As you know Celiac is strongly heritable, so I wonder if her attitude changed because she started to realise it may be a problem for her too? Just a thought.

The main thing I wanted to say though, is that with this disease, you really do have to learn how to cook. Even if your Mum was supportive, you wouldn't spend your whole life living in her house, so you will be moving out at some point to make your own way in life. With celiac you can't rely on eating just quick-fix processed foods, you will need to eat mainly simple wholefoods prepared from scratch. Why not start learning now? You never know, you might find you do well enough to prepare some meals for all the family and take some of the pressure off your Mum. I bet that that would go down well!

Good luck!

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How about a crockpot? You can put the food in it before you leave for school and it will be ready by the time you get home. You never know, your family might even want to eat the meal with you. :)

There are so many things you can eat. It just takes a while to get used to thinking differently. THere are spice mixes that do not have wheat, aren't there? I love lemon pepper and it doesn't give me a problem. Maybe you can buy the individual spices and mix it up for your mom?

I can relate to being busy--I work full time, go to school in the evenings to finish my degree and I have a teenage son that is a full time job as well. I also cook almost all of our meals, gluten free of course. It can be done, you just need to get in a routine.

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I was going to say the same thing. You're going to have to learn to follow some recipes and cook your own meals eventually. Why not tell your folks that you'll cook everyone's dinner if they spring for the ingredients? There are plenty of easy to follow recipes online for stir-fry, pastas, pizza, ect. Some may not be gluten free, but you can easily sub in your gluten free ingredients (assuming we aren't talking baking). My family has been good about either letting me cook when I come visit or asking me if everything is safe. However, if they decided to make something I couldn't eat it wouldn't hurt my feelings. I would just warm up a can of gluten-free soup or something.

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Mom refuses to believe there's even a chance of her having celiac disease. She's told me before she thinks I'm a hypochondriac because first it was depression, then GI upsets, then fibro, now this. Like I said, she was really supportive at first, but then it just got "too hard" to find the ingredients I wanted for the few things I can cook....

About learning to cook. I want to, I really do, I just need to be supervised in the kitchen & the only one willing to do that is my boyfriend, and he takes over about 1/4 of the way through cooking because I'm "not doing it right" I have to "do it like this" and "nevermind, I'll just cook it myself, you're liable to burn the house down". Yeah, they all hold it over me that I have this horrible luck of setting things on fire in the kitchen. Last week I tried to make myself a hamburger and the grease splattered onto the stove and everything just... went up in smoke. I'm terrified of being in the kitchen without supervision because I panic over fire. One of my stupid fears.

I mentioned that my parents didn't want to pick up ingredients that were gluten-free because they were "too hard to find". This was easily solved when I could go grocery shopping with them, but my classes changed and now they go without me. I can't buy my own food because I don't have any money for it. & frankly it would be pretty easy if they bought raw ingredients I could work with, but they don't. They live very heavily off boxed foods like kraft mac'n'cheese, campbell's soups.... I didn't have homemade food until I met my boyfriend a year ago. Everything my parents eat is from a box or a can, and everything else is "too expensive" or "too hard to find". Sorry if this seems rude, I'm just so frustrated. I feel like I'm running out of choices, and will have to resort to eating gluten while I'm living here.

Last weekend I was going to make them homemade shredded chicken tacos with my boyfriend (who promised he wouldn't step in this time... yeah right), and they said they would buy all the ingredients and everything, but after they came home from shopping the day I gave them the list I got the usual excuses.... "Too hard to find" and "too expensive". The only thing they got was the rice and tomato paste. I needed corn tortillas, a whole chicken, and cheese as well, at the very bare minimum. :unsure:

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Mom refuses to believe there's even a chance of her having celiac disease. She's told me before she thinks I'm a hypochondriac because first it was depression, then GI upsets, then fibro, now this. Like I said, she was really supportive at first, but then it just got "too hard" to find the ingredients I wanted for the few things I can cook....

May I use you in my research report for college?? I also had depression, then the GI upsets (still have those...), then fibro as well. I really don't recall much during my "Depression Period" as I would like to call it myself. The GI upsets are because I have GURD and Acid-Reflux; it's very hard to eat my foods. I believe I was diagnosed with Fibro for almost...well... about 5 or 6 years.

If you need help in gaining some help in the kitchen.. I do advise making Ramen Noodles.

This is all you'd need [if you can get the supplies] :

Rice Noodles ( I use them in bundles )

1/2 cup - 1 cup of broth

made from 2 Bullion Cubes (they come in different flavors)

Water = 1/2 to 1 cup

>>> Microwave on a low setting, then stir it -- test-try to season

After following the directions for making the Rice Noodles, add the broth to it.

ENJOY!

I think it's a wonderful dish by itself, but you can add steamed vegetables, meat, or whatever you think would be good in it.

I bet your family would be willing to try it -- members of my family have tried it, though not big on ramen, and enjoyed it.

We must talk more on the Fibro and the rest of anything you've been diagnosed with! I am very curious and would very much like to see what symptoms we both have in common.

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The issue with your parents not being able to find you safe ingredients may have something to do with them not knowing what to look for. Initially my mother thought she had to buy the expensive all natural, specifically labeled "gluten free," corn chips. She now knows some of the things to look for in the ingredient list, but I still double check all the labels she brings home. Another issue is not realizing gluten can be hidden in spices, raw meats, cheeses, and sauces. Bad eye sight, which can pop in in our parents generation, can also be frustrating when you have to go through and read everything you buy. If you give your parents specific brands for the products you need you may have an easier go at getting safe stuff. For example, you could have told them to get Mission corn tortillas (found with the regular tortillas or in the fridge areas), Kraft or Generic shredded Mexican or Taco cheese, and some Tyson chicken breasts. All of these things are found in the majority of normal grocery stores. The problem with my example is that it requires you to know these common ingredients, which you may not if you don't have much experience in the kitchen. If you can't reach an agreement with your parents you may have to consider getting a job. When I was in undergrad I worked 15-20 hours a week (mostly the weekends) and was able to purchase my own food, gas, and leisure activities even though my parents paid for my student housing. Working meant I couldn't hang out with my friends all weekend long, but it did give me some independence and good job experience for my resume. Even with this I maintained a great relationship with my friends and girlfriend and kept good grades (biochemistry major).

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If you can't reach an agreement with your parents you may have to consider getting a job. When I was in undergrad I worked 15-20 hours a week (mostly the weekends) and was able to purchase my own food, gas, and leisure activities even though my parents paid for my student housing. Working meant I couldn't hang out with my friends all weekend long, but it did give me some independence and good job experience for my resume. Even with this I maintained a great relationship with my friends and girlfriend and kept good grades (biochemistry major).

There are 168 hours in a week. 20 are spent in class, 40-60 are spent on homework, 40 are spent on directed practice, about 5 are spent on travel time between school, directed practice, and home. If I'm getting 6 hours of sleep a night (about usual for me) then that's an additional 42 hours a week gone. That leaves NO time for a job per week (maybe 1 hour). But you'll notice I didn't count time it takes to wake up, shower, eat breakfast, pack a lunch, make dinner, eat dinner, and take care of my ferret. I mean it when I say I have NO time for a job until I'm done with school. My other option is to continue to rack up 20k in loans at 6.9% annually for an additional 4 years (8 years of school instead of my 4) and be in super-mega debt when I'm out of school, instead of only in a little debt, but my schedule's already been locked for fall semester and they'll charge me a fee to change it.

Trust me. If I could get a job, I would. If I had time for a job, I would. I want to, I dislike not having any money right now. But this is my cheapest option to get through college as fast as possible.

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Your mother sounds like a real piece of work. I don't know how you are going to convince her to do something so "expensive and inconvenient" as buy real food instead of convenience food.

Is there a possibility you could borrow enough money on a student loan that you can buy some safe food to supplement what your parents buy? I'm not talking about 20K annually, but probably a couple thousand dollars tops. I know getting through school debt-free is ideal, but if you're celiac you may not stay healthy enough to manage such a rigorous schedule eating gluten.

As far as the cooking, there are a lot of beginner cooking videos on YouTube. You can also watch cooking shows on TV while you're doing homework. Even paying half-attention you'll start to learn stuff. You're going to need to learn to cook to survive with celiac disease.

I'll second the suggestion of a crockpot. This site is great for recipes. http://crockpot365.blogspot.com/ I cook batches of food in my crockpot and freeze it in single serving containers so I can grab them during the work week. You need to learn to bake potatoes in the microwave. http://allrecipes.com/recipe/microwave-baked-potato/ Be sure to prick the potato a few times with a knife or fork so it doesn't build up steam and explode. Steamer bags of frozen veggies are pretty idiot-proof too. Rice cookers are great. You can make perfect rice with the push of a button, plus cheap, nourishing dishes like rice pilaf with lentils.

If you are really so inept that you can set salad on fire, which is actually sort of impressive :lol:, you need to set an open box of baking soda on the counter next to you when you cook. Baking soda will put out a grease fire very quickly and easily. Keep your wits about you, unplug the appliance or turn off the stove, and dump the baking soda on the fire before it has a chance to get big.

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This is really good advice from Sylark, all of it.

You need to find a way to protect your health, otherwise you may simply not be well enough to get through such a rigorous college course, or you may find yourself limping through it with lower grades than you need. If the only way is a modest student loan to be able to buy safe food, then that is what you might need to do.

You might find that if you kickstart the process, your family may, in time, learn from you and your boyfriend and improve their own eating habits.

I know this all sounds very tough. You are in a tricky place, but it is not impossible by any means. You are young and you will get through it. I am a middle-aged wife and mother with a busy professional job, and a husband who works really long hours on top of a long commute, so who can give limited support at home. I don't cook very well either, and my kids are fussy eaters. I found that I can't cook or handle gluten foods for the family any more without making myself sick, so during my recovery have had to refocus not only my own particular very strict dietary needs, but also adapt what I am feeding to my grumpy gluten-deprived family. None of this is easy when you are feeling tired and unwell, but it can be done, and the effort is worthwhile in terms of improvements to health and energy levels.

You can do it, and your boyfriend sounds like a great support, albeit he still has to learn to stand back and watch you making mistakes and not simply take over. It will be a learning process all round.

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My health went super downhill in my last year of college due to undiagnosed celiac. I wasn't diagnosed until february of my senior year. During my junior and senior year, I napped almost every day, half-assed an unfortunate number of classes and assignments, started giving up on my social life... I was an English major which is my strength and that made it a lot easier; I can write thru pain and headaches and pulled good grades in the end because my program wasn't terribly difficult. But there were times that year, before diagnosis, when I was literally starving (couldn't eat due to severe reflux), shaking, going crazy. I did have to take a semester off before that last year due to breaking down into a spiral of depression and self-harm. It is all inter-connected.

You will not be able to graduate if you keep eating gluten and making your health worse. When I was running on 6 hours a night of sleep or less due to insomnia, I started cutting myself because I couldn't handle it. The world seemed like a dream and I was always out of it. Lack of sleep combined with my unwittingly eating gluten and soya led to this.

I'm sorry your parents are jerks. Ask if they can buy you cheap stuff in bulk like rice and dried beans. Those are easy to make, only involve boiling in water on the stove, nothing to catch fire unless you forget to add water I guess?

Otherwise, hunger-strike? Unless your parents really are heartless enough to watch you starve rather than buy you food that is safe for you to eat?

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Aren't parents AWESOME?!!

I know the pinch of money and school and parents and living with them, its all still fresh in my mind years later.

Your bf sounds pretty nice, is it viable to move in with him? Is it viable to simply move out by yourself? Neither of these options means you have to get a job, you will just have to borrow more money for rent, and spend a bit more time making your own food and shopping. Oh wait, you already have to do that anyways.

Sure convenience of home is nice and all, but I know that personally for me, convenience had nothing over my sanity and feelings of self-worth.

Another option is that you could try and get an official diagnosis for celiac disease or gluten-intolerance, if that would change your mom's attitude at all. I know for bloodwork you have to be eating gluten in order for it to show up positive, but I've been gluten-free for 2 months now, and I expect to get a biopsy and/or endoscopy while I'm gluten-free to confirm the dx.

Have you told her that the depression, fibromyalgia, and GI problems are classic celiac disease symptoms? I can only believe she'd/they'd act this badly about it because they don't think it's a real diagnosis.

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As far as the cooking, there are a lot of beginner cooking videos on YouTube. You can also watch cooking shows on TV while you're doing homework. Even paying half-attention you'll start to learn stuff. You're going to need to learn to cook to survive with celiac disease.

I'll second the suggestion of a crockpot. This site is great for recipes. http://crockpot365.blogspot.com/ I cook batches of food in my crockpot and freeze it in single serving containers so I can grab them during the work week. You need to learn to bake potatoes in the microwave. http://allrecipes.com/recipe/microwave-baked-potato/ Be sure to prick the potato a few times with a knife or fork so it doesn't build up steam and explode. Steamer bags of frozen veggies are pretty idiot-proof too. Rice cookers are great. You can make perfect rice with the push of a button, plus cheap, nourishing dishes like rice pilaf with lentils.

If you are really so inept that you can set salad on fire, which is actually sort of impressive :lol:, you need to set an open box of baking soda on the counter next to you when you cook. Baking soda will put out a grease fire very quickly and easily. Keep your wits about you, unplug the appliance or turn off the stove, and dump the baking soda on the fire before it has a chance to get big.

Thank you for the baking soda tip! I've never heard of that before! The only thing I was told was to put a lid over the flames and for some things (like when the fish caught fire in the oven) that's really hard to manage. What's nice is that just recently we upgraded to a stove with a ceramic top instead of one of the one with the ugly metal burners and grease traps, so setting fire that way has kinda gone bye-bye. Btw, don't pour hot chicken pieces straight onto a salad with a vinegarette dressing on it. That's how I caught it on fire. Somehow.

Aren't parents AWESOME?!!

I know the pinch of money and school and parents and living with them, its all still fresh in my mind years later.

Your bf sounds pretty nice, is it viable to move in with him? Is it viable to simply move out by yourself? Neither of these options means you have to get a job, you will just have to borrow more money for rent, and spend a bit more time making your own food and shopping. Oh wait, you already have to do that anyways.

Sure convenience of home is nice and all, but I know that personally for me, convenience had nothing over my sanity and feelings of self-worth.

Another option is that you could try and get an official diagnosis for celiac disease or gluten-intolerance, if that would change your mom's attitude at all. I know for bloodwork you have to be eating gluten in order for it to show up positive, but I've been gluten-free for 2 months now, and I expect to get a biopsy and/or endoscopy while I'm gluten-free to confirm the dx.

Have you told her that the depression, fibromyalgia, and GI problems are classic celiac disease symptoms? I can only believe she'd/they'd act this badly about it because they don't think it's a real diagnosis.

I have one more year of community college then two years of state college to finish my major. Last night I was pondering the idea of going away for college instead of just going to the one down the street (it doesn't have dorms). I'm going to talk to a financial aid adviser tomorrow to see what my options are for my loan. I'd have to get my parents to drop me as a dependent though, otherwise I won't qualify for much more than I'm getting now, and what I'm getting now only covers tuition and the majority of my textbooks. But I definitely wouldn't have thought of using student loans to live in a dorm or pay for my food if I hadn't come to this board, so for that I thank you guys. I'll let you know what the financial aid adviser says tomorrow, if I can get in.

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Thank you for the baking soda tip! I've never heard of that before! The only thing I was told was to put a lid over the flames and for some things (like when the fish caught fire in the oven) that's really hard to manage. What's nice is that just recently we upgraded to a stove with a ceramic top instead of one of the one with the ugly metal burners and grease traps, so setting fire that way has kinda gone bye-bye. Btw, don't pour hot chicken pieces straight onto a salad with a vinegarette dressing on it. That's how I caught it on fire. Somehow.

I have one more year of community college then two years of state college to finish my major. Last night I was pondering the idea of going away for college instead of just going to the one down the street (it doesn't have dorms). I'm going to talk to a financial aid adviser tomorrow to see what my options are for my loan. I'd have to get my parents to drop me as a dependent though, otherwise I won't qualify for much more than I'm getting now, and what I'm getting now only covers tuition and the majority of my textbooks. But I definitely wouldn't have thought of using student loans to live in a dorm or pay for my food if I hadn't come to this board, so for that I thank you guys. I'll let you know what the financial aid adviser says tomorrow, if I can get in.

Make sure you have enough hours to get into a dorm with a dedicated kitchen or you'll be in the exact position you're in now. You need to control your kitchen and food, not lose more control (which is what happens to underclassmen, generally, in a dorm). Get their promises in writing, please.

Really, you caught a salad on fire??? That's talent!!! Most people would cool them a bit before adding them, unless you are purposely wilting the salad.

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Make sure you have enough hours to get into a dorm with a dedicated kitchen or you'll be in the exact position you're in now. You need to control your kitchen and food, not lose more control (which is what happens to underclassmen, generally, in a dorm). Get their promises in writing, please.

Really, you caught a salad on fire??? That's talent!!! Most people would cool them a bit before adding them, unless you are purposely wilting the salad.

There are campus apartments, which are cheaper, as well as an on-site dining room that caters to vegans, gluten-free, and a whole variety of allergies. It says I need to be an incoming freshman to be able to get into a dorm room, which I won't be.

I had no idea, I thought that's how you were supposed to do it :/ I wanted warm chicken in my salad! lol

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    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      Not to mention my hips and knees are killing me and I have really bad calf pains and horrible bloating after just 3 days of glutening. I don't think I could live like this for a whole week.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I saw my gi today and he said to not worry about eating gluten. I have abdominal pain in the small intestine area and referred pain in my back, indicating pretty bad damage. So I'll just go without the gluten and do the genetic testing if needed.
    • Vagus Nerve Attack
      Hello All: I came across this series of posts from as Google search on "Wheat Vagus Nerve". I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms. I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return. The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration. My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight. Thanks for your posts, and I hope my contribution is of benefit to others also.
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    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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      Hi Peaceflower, Just wanted to say thank you for the chat.
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