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Chalula88

Me And Sister Feel Absolutely Terrible

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I have been gluten free for a little over 2.5 years (since age 19). I had extremely severe symptoms throughout my entire childhood that were mostly ignored by doctors as "nervous stomach". I had severe stomach aches almost every day, alternated between D and C, was tired, depressed and anxious all the time, as early as I can remember.

After reading about Celiac, I decided to try the diet and my stomach problems turned around overnight, but the other symptoms have lingered. I was hoping my intestines just needed time to heal and I would get better after a year or two, but 2.5 years later, I still feel awful.

I am extremely sensitive to gluten and even microwaving after someone who's microwaved something with gluten gives me severe D within minutes, so I'm pretty sure it can't be low levels of gluten or CC that's causing the problem (I almost never eat out, I make all my own food, and I rarely eat anything prepackaged). I have never been "officially" diagnosed with Celiac, but it's obvious gluten is a serious problem for me.

I have been taking huge amounts of sublingual B12 and D for about two months with no notable improvement.

My sister, on the other hand, never had any stomach problems her whole life, but suddenly this year (at 15) she became extremely lethargic, moody, and anxious. She started having episodes of her throat closing up, as well as occasional vomiting and stomach aches. Her biggest symptoms by far seem to be neurological. She is so tired and can't concentrate to such a degree that she missed an entire quarter of school.

She was tested for everything under the sun and came back completely normal. And I literally mean everything: anemia, vitamin deficiency, hypothyroidism, mono, diabetes, etc, etc, etc. She even saw a communicable disease specialist. All tests came back completely normal.

They decided eventually (after I begged my mom to beg the doctors) to do allergy testing. Well, her results were so severe the allergists said they had never seen anything like it. She tested allergic to: barley, wheat, oats, rice, corn, lettuce, carrots, peas, sesame, every type of bean, peas, lentils, soy, all nuts, celery, mustard, and every fruit except pears.

She tested allergic to milk in a blood test, but not in a scratch test and so they said it's okay if she eats it. Does that sound right? Seems weird to me...

They decided to do an endoscopy and decided she has EE (eosiphillic esophagitis), based on the fact that she had a few more of the eosinophils (sp?) than is normal. I'm not sure that this diagnosis is accurate since she doesn't really have any of the symptoms of EE (choking sensations, coughing, regurgitating food right after eating, etc.).

After eliminating all of the foods she's allergic to (which means basically she's eating things they never tested her for, so we don't really know whether or not she's allergic) there has been no improvement at all with any of her symptoms. She's had none of these foods for probably 3 weeks and has had no soy or corn for 5-6.

So my sister's symptoms that she's only developed in the last 6-8 months are identical to the symptoms I've been having my entire life, though they got much much worse around the time I went into high school.

I moved out of my parents' house 4 years ago and only visit once every week or two, so I don't think it can be something environmental.

The primary symptom is overwhelming exhaustion, to the point that we will be in tears, just feeling like we can't do anything, even the simplest tasks will be overwhelming and impossible to complete. The exhaustion makes us snappy and irritable, almost like we're panicked. We also "zone out" for periods of time, just staring at a wall, it feels like an out of body experience. We will be so far away that it's actually difficult to communicate to people, talking is more effort than we can muster, and listening comprehension is almost impossible. We can barely understand what people are saying when we are having an episode like this, they range in degrees of severity but affect us both to some degree every day.

We both feel like there are things we actively want to do, but are too tired to do them and it's devastating. We both have occasional good days where we are very upbeat, energetic, and happy, but they are few and far between. More often, we are like that for only a short period (a couple hours at most) every day or two, then go back to being irritable, lethargic, and unhappy.

On top of that we have frequent, near constant headaches that are not cured by anything, dizziness (sometimes I will just tip to one side or tip over), clumsiness and muscle weakness that vary in severity on a day to day basis.

I am in college and I have so much trouble paying attention and focusing that it's hurting my grades. I feel like my brain resists learning and the only way I cope is by spending all my free time lying on the couch.

At this point, the doctors are saying to just keep up on the diet, but I feel that they've given up. Does anyone have any idea what could be going on?

I decided to try slowly eliminating foods from my diet to see if it's linked to something specific. I have been 100% off dairy since Sunday. I felt actively better the first two days, but today I feel substantially worse (though today was also my first day back in class, so that could have something to do with it). Does this sound like a good way to go about it? How long should I go without each food before determining that it's safe?

Sorry this is so long. Any thoughts at all are greatly appreciated! Thanks so so much!

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I have been gluten free for a little over 2.5 years (since age 19). I had extremely severe symptoms throughout my entire childhood that were mostly ignored by doctors as "nervous stomach". I had severe stomach aches almost every day, alternated between D and C, was tired, depressed and anxious all the time, as early as I can remember.

After reading about Celiac, I decided to try the diet and my stomach problems turned around overnight, but the other symptoms have lingered. I was hoping my intestines just needed time to heal and I would get better after a year or two, but 2.5 years later, I still feel awful.

I am extremely sensitive to gluten and even microwaving after someone who's microwaved something with gluten gives me severe D within minutes, so I'm pretty sure it can't be low levels of gluten or CC that's causing the problem (I almost never eat out, I make all my own food, and I rarely eat anything prepackaged). I have never been "officially" diagnosed with Celiac, but it's obvious gluten is a serious problem for me.

I have been taking huge amounts of sublingual B12 and D for about two months with no notable improvement.

My sister, on the other hand, never had any stomach problems her whole life, but suddenly this year (at 15) she became extremely lethargic, moody, and anxious. She started having episodes of her throat closing up, as well as occasional vomiting and stomach aches. Her biggest symptoms by far seem to be neurological. She is so tired and can't concentrate to such a degree that she missed an entire quarter of school.

She was tested for everything under the sun and came back completely normal. And I literally mean everything: anemia, vitamin deficiency, hypothyroidism, mono, diabetes, etc, etc, etc. She even saw a communicable disease specialist. All tests came back completely normal.

They decided eventually (after I begged my mom to beg the doctors) to do allergy testing. Well, her results were so severe the allergists said they had never seen anything like it. She tested allergic to: barley, wheat, oats, rice, corn, lettuce, carrots, peas, sesame, every type of bean, peas, lentils, soy, all nuts, celery, mustard, and every fruit except pears.

She tested allergic to milk in a blood test, but not in a scratch test and so they said it's okay if she eats it. Does that sound right? Seems weird to me...

They decided to do an endoscopy and decided she has EE (eosiphillic esophagitis), based on the fact that she had a few more of the eosinophils (sp?) than is normal. I'm not sure that this diagnosis is accurate since she doesn't really have any of the symptoms of EE (choking sensations, coughing, regurgitating food right after eating, etc.).

After eliminating all of the foods she's allergic to (which means basically she's eating things they never tested her for, so we don't really know whether or not she's allergic) there has been no improvement at all with any of her symptoms. She's had none of these foods for probably 3 weeks and has had no soy or corn for 5-6.

So my sister's symptoms that she's only developed in the last 6-8 months are identical to the symptoms I've been having my entire life, though they got much much worse around the time I went into high school.

I moved out of my parents' house 4 years ago and only visit once every week or two, so I don't think it can be something environmental.

The primary symptom is overwhelming exhaustion, to the point that we will be in tears, just feeling like we can't do anything, even the simplest tasks will be overwhelming and impossible to complete. The exhaustion makes us snappy and irritable, almost like we're panicked. We also "zone out" for periods of time, just staring at a wall, it feels like an out of body experience. We will be so far away that it's actually difficult to communicate to people, talking is more effort than we can muster, and listening comprehension is almost impossible. We can barely understand what people are saying when we are having an episode like this, they range in degrees of severity but affect us both to some degree every day.

We both feel like there are things we actively want to do, but are too tired to do them and it's devastating. We both have occasional good days where we are very upbeat, energetic, and happy, but they are few and far between. More often, we are like that for only a short period (a couple hours at most) every day or two, then go back to being irritable, lethargic, and unhappy.

I am in college and I have so much trouble paying attention and focusing that it's hurting my grades. I feel like my brain resists learning and the only way I cope is by spending all my free time lying on the couch.

At this point, the doctors are saying to just keep up on the diet, but I feel that they've given up. Does anyone have any idea what could be going on?

I decided to try slowly eliminating foods from my diet to see if it's linked to something specific. I have been 100% off dairy since Sunday. I felt actively better the first two days, but today I feel substantially worse (though today was also my first day back in class, so that could have something to do with it). Does this sound like a good way to go about it? How long should I go without each food before determining that it's safe?

Sorry this is so long. Any thoughts at all are greatly appreciated! Thanks so so much!

Hi I just wanted to say I really feel for you two. I have gone through similar symptoms and back then no one seemed to know or acknowledge anything. They just thought I was too sensitive! I would get sick for months at a time.

The thing is is that I have far more severe reactions to gluten than most, and you two may also. The reacting to things from a shared microwave is a case in point. I was shocked to learn recently not all people with celiac or severe gluten sensitivity react to that, though my boyfriend and I certainly do.

The other thing is that it is very likely other allergens are bothering you. In your case I would look into the possibilty you have casein intolerance. I don't but am lactose intolerant instead. I thus can and do eat my own home made yogurt. But many can't.

I am also salicylate sensitive, which could also be your sister's situation. It makes one very sensitive to all kinds of fruits and vegetables and nuts. It too ruins one's intestinal villi by the way. The best thing is to go off high and moderate salicylates. Look into the salicylate sensitivity forum for food lists and info as well as support. Livestrong also has some good articles on this. Plus there is the Feingold diet, though I think for my book it does not go far enough.

Chemical sensitivities and food dies are also something to look into. And meanwhile realize there is gluten in a lot of building materiails plus anything at all that has glue in it.

Many react to corn since it too can mess with the brain plus often nutures bad fungi. It certainly does for me.

Meanwhile avoid sugar and pre-prepared foods like the plague. Its tough given your age, but necessary. Also avoid all diet foods and drinks. They are loaded with excitotoxins that mess with the brain and kill off the mitochondria, destroying your basic energy production. Most soy (unless really fermented), nutrasweet, MSG and its many derivatives, hydrolyzed vegetable protein, carageenan--you name it! Our food supply is filled with excitotoxins tyo make empty foods appear more tasty, forgetting the cost to our health.

Also consider taking dandelion root and nettle tea regularly to help get your liver and bile and kidneys to function better and clean out some of your toxins. Also take probiotics and digestive enzymes (though maybe not the plant based ones, eh?--plus must be gluten and casein free etc.). There are ones by Jarrow that are pretty good.

Making your own live foods could also go a long ways towards renewing your health and energy. Look online into how to make your own live yogurt and sauerkraut for instance. This should help improve your digestive health--which it seems is key.

Good luck!

Bea

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Wow. Have you read through the supersensitive section?

Do you journal your meals?

If I was you, I'd try something like the GAPS diet along with Bea's suggestions (however the two intersect).

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When you mentioned headaches it reminded me of why I gave up drinking diet soda years ago. It took me a while to realize they were the reason I was getting a headache every afternoon. And for me corn syrup makes me tired, but you said your sister quit eating all corn, so that's probably not it. I would also agree about the MSG and it's derivatives -- see http://www.msgtruth.org/ as well as http://www.truthinlabeling.org/ for more about that, if you want.

Otherwise having a better idea about what you both eat and drink, as well as supplements, etc. would probably help. Do you keep any kind of a food diary?

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Thank you so much for the replies!

No food journal yet, I will start one today, any tips?

I gave up soda and caffeine about 8 months ago and I have felt better since then, though the better feeling leveled off and started declining and now I feel pretty much back to my previous exhaustion level (this seems to happen with any food I try eliminating). I haven't had any artifical sweeteners since early childhood, they don't sit well with me at all. The only thing I drink is water and very occasionally gluten-free tea.

I only eat meat about once a week. The food I eat the most often is hard corn tacos with refried beans and cheese. I actually eat a lot of cheese, which is why I thought maybe dairy is the problem. I also eat a lot of rice. Tofu maybe once a week. I also eat a lot of hot sauce, because I love it, but that's just chili pepper, salt, sugar, and vinegar. So I'm thinking it could be the cheese on the tacos, the soy in the tofu and soy sauce, or possibly the beans? I'm poor and busy, so I don't eat a super diverse diet. Mostly I eat various Chinese and Mexican dishes.

I'm not sure what my sister drinks these days. She was off soda for a while, then her nutritionist said that corn syrup and corn starch aren't really corn, so she could eat/drink it. I discouraged this, but I think she started drinking it again anyway.

She has always eaten a lot worse than me, her favorite foods used to be chocolate, ovaltine, and ramen noodles. Obviously now, she's not having that stuff anymore, but she still will only eat sweet sugary foods: heaps of sugar on gluten-free cereal, these chocolate chip meringue cookies my mom makes, etc.

I am the complete opposite, I don't like sugar at all and I rarely eat anything sweet. I don't know about sugar hiding out in non-sweet foods though.

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I'm very concerned about both of you! There can be a whole list of culprits that are causing your symptoms. One might be that food sensitivities are causing nutritional deficiencies. Here is a good website that lists the symptoms of various nutritional deficiencies where you might compare some of your and your sister's symptoms.

http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

It's possible that you may be deficient in sodium, B-5 and B6, E, and magnesium (by the way, it is very common to be deficient in magnesium in the U.S., regardless of food sensitivities or celiac).

However, another strong possibility exists: you could both be suffering from black mold sensitivity. One website stated the following: Mold can trigger allergic reactions and asthma attacks in many. Complaints of flu-like symptoms, chronic fatigue syndrome, memory impairment, migraines, sick building syndrome, dizziness and nosebleeds are common. These are the mild symptoms. Many researchers claim that mold can attack several main body systems, including the brain, central nervous and immune systems and have been the direct cause of some deaths.

Article Source: http://Spammers Use This To Link To Spam.com/295403

Sound familiar? Do you live in a part of the U.S. where there has been a lot of rain or flooding and where mold might be prevalent at this time? This might be something worth investigating.

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Thank you so much for the replies!

No food journal yet, I will start one today, any tips?

I gave up soda and caffeine about 8 months ago and I have felt better since then, though the better feeling leveled off and started declining and now I feel pretty much back to my previous exhaustion level (this seems to happen with any food I try eliminating). I haven't had any artifical sweeteners since early childhood, they don't sit well with me at all. The only thing I drink is water and very occasionally gluten-free tea.

I only eat meat about once a week. The food I eat the most often is hard corn tacos with refried beans and cheese. I actually eat a lot of cheese, which is why I thought maybe dairy is the problem. I also eat a lot of rice. Tofu maybe once a week. I also eat a lot of hot sauce, because I love it, but that's just chili pepper, salt, sugar, and vinegar. So I'm thinking it could be the cheese on the tacos, the soy in the tofu and soy sauce, or possibly the beans? I'm poor and busy, so I don't eat a super diverse diet. Mostly I eat various Chinese and Mexican dishes.

I'm not sure what my sister drinks these days. She was off soda for a while, then her nutritionist said that corn syrup and corn starch aren't really corn, so she could eat/drink it. I discouraged this, but I think she started drinking it again anyway.

She has always eaten a lot worse than me, her favorite foods used to be chocolate, ovaltine, and ramen noodles. Obviously now, she's not having that stuff anymore, but she still will only eat sweet sugary foods: heaps of sugar on gluten-free cereal, these chocolate chip meringue cookies my mom makes, etc.

I am the complete opposite, I don't like sugar at all and I rarely eat anything sweet. I don't know about sugar hiding out in non-sweet foods though.

Well, unless you are making your corn taco shells from certified gluten-free corn, and making your refried beans at home you are eating a regular amount of prepackaged foods - toss in the tofu, soy sauce (I assume gluten-free soy sauce) and cheese and it increases.

Are you eating fresh fruits and veggies? What are your protein sources? Beans? Tofu?

There are others on here that seem to develop problems with most foods or just can't pinpoint an underlying issue. I wish there was an easy way to find their posts... Leaky Gut seems to be a frequent culprit (GAPS diet), as does another intolerance like milk, corn, soy - those are ingredients found in many processed foods so if one is an issue it can hit you so often it is hard to pin down.

I suggest a food diary - what, when, how much and how you feel at regular periods during each day.

I'd also suggest trying a week of food you don't usually eat, and in "whole form" to cut out additives so you can ID reactions easier.

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Well, unless you are making your corn taco shells from certified gluten-free corn, and making your refried beans at home you are eating a regular amount of prepackaged foods - toss in the tofu, soy sauce (I assume gluten-free soy sauce) and cheese and it increases.

Are you eating fresh fruits and veggies? What are your protein sources? Beans? Tofu?

There are others on here that seem to develop problems with most foods or just can't pinpoint an underlying issue. I wish there was an easy way to find their posts... Leaky Gut seems to be a frequent culprit (GAPS diet), as does another intolerance like milk, corn, soy - those are ingredients found in many processed foods so if one is an issue it can hit you so often it is hard to pin down.

I suggest a food diary - what, when, how much and how you feel at regular periods during each day.

I'd also suggest trying a week of food you don't usually eat, and in "whole form" to cut out additives so you can ID reactions easier.

Prickly Pear--all excellent suggestions. I will add one to the food journal, its a good idea to take your pulse before, right after and a couple of hours after eating. This is called the Coco pulse test. It helped me determine a lot of my food sensitivities years ago. I was told I was unusual in that I sometimes reacted to certain foods eaten together but not by themselves, or at certain time intervals (usually measured in days or weeks). I learned later on it is not that uncommon. Doctors don't like it though since it complicates matters.

Cheese and beans are often tough to digest. A lot of cheese these days has all kinds of additives in it, not to speak of the casein you just might be sensitive to. I can handle eating my own home made yogurt but not cheese. As it turns out its likely due to the high salicylate content of cheese.

Add in corn and its a possible minefield since corn is very difficult to digest too plus has nasty features like nerve toxins and fungal properties.

The hot sauce made with tomatoes could aggravate matters, since many are sensitive to tomatoes and peppers (again salicylates or simply a sensitivity to the tomato family which includes peppers and potatoes)--plus again the additive problem of many sauces. Often the vinegar is a hidden source of gluten by the way.

I am not against eating beans, am trying them again myself. But am making my own and soaking them extra long and then bringing them to a boil with new water (3 times!) and then cooking the heck out of them in the crock pot using new water. I am finding some kinds are easier to digest than others. For me to digest properly however I still need to use digestive enzymes as well as dandelion root and things like home made yogurt or sauerkraut eaten with it or after.

Chinese food is easier to digest and generally healthier since there is less fat and more vegetables which are often balanced. You want to make your own again however to avoid all possible food additives.

Nevertheless the idea of eating things outside of your normal bean, cheese corn and Chinese food routine is probably best at first, I totally agree. This way you will be able to figure out what is going on more easily.

It doesn't cost a lot to cook your own food. Its actually cheaper than the alternative. However it does take some planning, coordination and time. IMHO it is well worth the effort in increased energy and health. Getting your own crock pot(s) and rice cooker could be a first step for cooking soups etc. if you don't have a lot of time at home. A bit of meat and lots of veggies and brown rice can go a long way in this fashion.

Also make sure you have those food carrying pouches with re-usable blue ice you re-freeze each day when you get back home.

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When you mentioned headaches it reminded me of why I gave up drinking diet soda years ago. It took me a while to realize they were the reason I was getting a headache every afternoon. And for me corn syrup makes me tired, but you said your sister quit eating all corn, so that's probably not it. I would also agree about the MSG and it's derivatives -- see http://www.msgtruth.org/ as well as http://www.truthinlabeling.org/ for more about that, if you want.

Otherwise having a better idea about what you both eat and drink, as well as supplements, etc. would probably help. Do you keep any kind of a food diary?

These are great links--thankyou!

Bea

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Thanks so much for the replies!

rosetapper,

thanks for the links, I will look into it! My sister tested as not nutrient deficient, so I'm not sure that that could be the cause. My parents were told my sister is allergic to mold and thoroughly cleaned their basement (though found no mold there) and her symptoms have not changed. I live in an apartment building that has no mold in the basement, but a bit did grow on the baseboards, however it was white and spotty, like food mold. We cleaned it off and it hasn't come back.

pricklypear and yolo,

I guess I never really considered canned beans or taco shells as pre-packaged. The taco shells only have three ingredients ( water, lime, corn) and were processed in a facility without wheat. I assumed they would be safe. I generally only eat pre-packaged food that has no chemicals or preservatives, but I'll keep an eye out and specifically avoid them for a while.

I do make my own Chinese food with brown rice, veggies, and tofu. The seasonings we use are gluten-free and usually don't have MSG, but some of them do. And yes, my soy sauce is gluten-free.

My new year's resolution was to eat more veggies and whole foods, so since then I've eaten a bunch of veggies, but I haven't yet figured out convenient completely whole food things to eat. I like cooking and I do have time to cook 4 days a week, I just need to come up with things to make.

I looked into all your suggestions and I think corn syrup might have been what made me feel so terrible yesterday. Ordinarily I don't eat anything with corn syrup, but in avoiding milk, I ate some things I don't usually eat, including more pre-packaged food than normal. I'm not sure what to make without dairy.

If you're interested, here's what I ate. The things in bold are things I didn't normally eat prior to January 1.

January 1

Cream of rice with brown sugar and cinnamon

Curry in a can: coconut milk, water, bamboo shoots, garlic, lemon grass, red chili, shallot, salt, galangal, kaffir lime peel, coriander, pepper, cumin, baby corn, sugar, salt, sweet basil leaves, kaffir lime leaves

Spring rolls: these are gluten-free, but they were half eaten and in a baggy and not the original container, so I don't have the ingredients, but I know they have rice and shrimp.

Brown rice with onions and eggs

Hard corn tortillas with refried beans (no cheese)

Felt: energetic and happy

January 2

All natural peanut butter: peanuts, sugar, palm oil, salt, molasses

Strawberry jelly: strawberries, corn syrup, high fructose corn syrup, sugar, pectin, citric acid, grape juice concentrate

Tapioca bread (Gluten-free Casein-free): filtered water, rice flour, tapioca starch, high oleic safflower oil, pear juice concentrate, bamboo fiber, organic palm fruit oil, yeast, methylcellulose, guar gum, organic tapioca syrup, salt, orange citrus fiber, sugar cane fiber, baking powder, calcium phosphate

Sloppy Joe sauce in can: water, tomato paste, high fructose corn syrup, distilled vinegar, corn syrup, salt, sugar, dehydrated onion, red and green bell pepper, chili pepper, tomato fiber, spices, guar gum, xanthan gum, dehydrated garlic, carob bean gum

Turkey and fresh green pepper

Fresh Taiwan Spinach

Natural kettle corn: popcorn, sugar, canola oil, salt

Fresh Leak: sauteed with gluten-free bouillon cube in water and black pepper

Felt: happy and energetic until evening, then suddenly overwhelmed, stressed, exhausted, and moody.

January 4

Tapioca bread, peanut butter, and jelly

Fresh Taiwan Spinach

Sloppy Joe

Turkey and fresh green pepper

Natural kettle corn

Corn taco with refried beans

Brown rice, black beans, fresh jalepeno, corn, fresh onion

Felt: terrible, exhausted all day, could barely keep eyes open, laid on the couch from 6pm on, sad for no reason, overwhelmed, unable to concentrate or focus at school, couldn't even muster enough energy for a conversation.

So my thoughts right now are to try avoiding corn syrup and dairy, does that sound like a good idea? I don't want to eliminate too many things at once and then not know what's working and what isn't.

How long should I go without dairy before trying it again? When I have symptoms, how far back should I look to find the culprit? Something I ate 24 hours ago or 1 hour ago or does it just depend?

Thanks so much guys! I'm going to try to get my sister to keep a food journal too.

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Yes, my sister's doctor thinks that she has EE. She has already seen a really good specialist. The problem is, they can't figure out what food is causing her symptoms. She has no symptoms from most of the food she tested positive for and severe symptoms from food she tested negative for. So we have no idea what to have her avoid. Right now she is avoiding everything she tested positive for, plus everything that gives her symptoms. As a result, she is eating only foods she was never tested for: quinoa, millet, etc. We asked for more testing, but the EE specialist said not to make it more complicated than it already is.

They did an endoscopy and will do another one in a little under three months to see if she is making progress. When looking at her intestines, they said it "wasn't too bad" and she tested negative for Celiac.

At this point she is having very minor/occasional digestive symptoms. On a gluten-free diet, I have no digestive symptoms at all. But we both still have severe exhaustion, fatigue, difficulty concentrating, and moodiness that comes and goes suddenly and is unrelated to physical or mental activity.

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Celiacs can have their first reaction to a food 36 hours after ingestion, so you can't automatically assume it was what you recently ate. That's why you need the journal.

I advise eating whole foods only for a few weeks, excluding major allergens, and barring any negative reactions to those foods, add back the major allergens one per week.

Yes, it's tedious. Yes, it's boring. But it works.

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Thank you pricklypear, I don't mind tedious or boring, I'm willing to do anything that will work!

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I've got to say, you have a lot of processed food there, any or all of them could have cc issues. I react to so many processed foods it isn't funny. :/ The latest is Bib's Red Mill apple muffin mix. I'm at the point where i won't even eat the almond butter i have bc i am reacting to everything and don't know what is safe anymore.

Please take the advice to go pure for a couple of weeks - only eat protein, veggies, fruit (make sure that the fruit is washed well, I just read that the wax on fruit can contain wheat -??). I know that when you're used to eating packaged products, it's hard to figure out what to eat that isn't prep-heavy and won't bore you to tears, but I don't think you have any other options here. Either you want to eat that way or you want to feel good :/.

Let me add something that probably isn't relevant, but just in case. I am not able to have any sugars without getting the symptoms you describe. That means anything from honey to table sugar to brown rice syrup. Of course sugar is in everything. I CAN eat sweeteners that are okay for diabetics. There are many other foods that I must avoid - cheese and bananas and many others - but too lengthy to list here. I recommend at some point when you are stable and feeling better (and assuming you "go pure" as I suggested above) where you do a sugar challenge over several days. If you were to find that you feel terrible emotionally and physically I would be happy to send you the diet that I am on. Even if it's a couple of years from now, I would be happy to send it out to you or anyone else. The diet changed my life, much the way the gluten-free diet is changing lives. It is something that was given to my mom and I by a Cdn doctor 20 years ago and I have never seen it published (or anything like it). But it changed my life. So - no doubt not something you want to do now, but file it away for future reference in case you continue to have difficulty.

Best of luck!

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Personally, I would start by going refined-sugar free. Sugar can do so much damage and it is addictive. When I first cut out all sugars, I had a headache for two days as a side effect, but my blood sugar swings stabilized and it gave me more energy.

There are other autoimmune diseases that could be considered. Have you been tested for the antibodies to your thyroid? How about an ANA test? That can give you clues to things like lupus, though many things can cause a high ANA. Your sister might have too many mast cells or mast cell reaction syndrome, causing allergic reactions.

You should read up on the GAPS diet, or Specific Carb Diet to get some ideas of where to start to heal your gut.

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Please note, the sugar intolerance I mentioned in my post has nothing to do with refined vs unrefined sugars. If I only cut out refined sugars but continued with the other types, I'd still feel like hell and would think sugars weren't the culprit! If you do decide to do a sugar challenge, get rid of them ALL (easiest way to figure out what is ok is to only have what diabetics can have). Then add back unrefined first if you want to check your reaction to those specifically.

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Looking at your few days' diary, I'd first suspect the corn syrup and hfcs, when it comes to being tired. That's exactly what it does to me. It's not easy to find jam or jelly without corn syrup, but I sometimes find some at Big Lots, and grab a jar or 2. There's another brand I know of that doesn't (or at least didn't) use corn syrup, but it's not in my current budget, i.e. Bonne Maman. Also, the bullion cube very likely had msg in it, I never use them. You could probably make your own sloppy joe with some sauteed onion, add hamburg and a small can of tomato paste and add water to the right consistency; 1 or 2 cans probably. I'm not sure what spices to use, there might be a gluten-free package mix, but look out for added msg there too... otherwise perhaps just a little garlic powder and salt & pepper would work?

Visit the recipe section of the forums, there are lots of ideas to be found!

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I am glad to hear you are willing to make some dietary changes, and have the time and focus to do it. Good for you! I think soon you will likely start feeling a lot better. Perhaps if you are able to rectify yourself, it will inspire your sister to go off sugary things if nothing else...

And yes, I think given your condition(s) going off sugar(s) is a must. It gives you a false high that soon crashes, plus seriously contributes to things like candida overgrowth, which come to think of it could be part of your problem. If you have candida overgrowth, sugar is way addictive. You actually go into withdrawal when you go off it. This could be what is happening to your sister. It can make you feel pretty nasty at first. But just ride it through. It will pass. There are various herbs and things that help you kill the excess candida overgrowth more effectively. But first you need to figure out if you have it or not. If you do have it, even eating fruit can be too much as far as sugars go. Plus eating ground up flours of any sort can feed the candida.

I also would seriously consider going off the corn too for a while, including things with corn in it like the xanthum gum. Both can mess with your brain and your energy. Plus corn feeds candida big time (assuming you have it of course). Its also not good for those who have salicylate sensitivity.

As far as soy goes, try going off it for a while. When re-introduced, only eat the really nasty looking fermented kind. Soy otherwise has all kinds of negatives about it. It is cancer inducing, wigs with your hormones big time, messes with your mitochondria (and thus energy production) etc.

Some can handle eating peanut butter. Others cannot. I am one of the not--though given my salicylate sensitivity, I can't handle eating any nuts or seeds at all--and only a very few fruits (peeled golden delicious apples and pears, cooked bananas and papaya). Let's hope you don't have that condition, eh?

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Yes, my sister's doctor thinks that she has EE. She has already seen a really good specialist. The problem is, they can't figure out what food is causing her symptoms. She has no symptoms from most of the food she tested positive for and severe symptoms from food she tested negative for. So we have no idea what to have her avoid. Right now she is avoiding everything she tested positive for, plus everything that gives her symptoms. As a result, she is eating only foods she was never tested for: quinoa, millet, etc. We asked for more testing, but the EE specialist said not to make it more complicated than it already is.

They did an endoscopy and will do another one in a little under three months to see if she is making progress. When looking at her intestines, they said it "wasn't too bad" and she tested negative for Celiac.

At this point she is having very minor/occasional digestive symptoms. On a gluten-free diet, I have no digestive symptoms at all. But we both still have severe exhaustion, fatigue, difficulty concentrating, and moodiness that comes and goes suddenly and is unrelated to physical or mental activity.

Stupid me--what is EE??

Oh, now I see it. Again seems like sugar could be a big culprit. Dandelion root tea should also help by helping create better digestion as well as cleaning out toxins in the liver and kidneys.

Bea

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I'm more than willing to make dietary changes. Unlike most people, I'm not attached to the foods I eat. I'm not a foodie at all and I just want to be healthy. So I don't really care about finding alternatives for the things I normally eat, I can just stop eating them.

But now I am feeling a little overwhelmed, because I'm not sure what I can eat.

Is there anything I can use to season soups and things besides bouillon? I see now that it has both sugar and MSG. :( I think vegetable soup would be a good thing for me.

I don't like the taste of sweet things, so I rarely eat fruit and never eat dessert. How would I know if I have candida overgrowth?

I think I will go to the international market tonight. What do you think I should buy as a staple food?

Thanks so much!

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I'm more than willing to make dietary changes. Unlike most people, I'm not attached to the foods I eat. I'm not a foodie at all and I just want to be healthy. So I don't really care about finding alternatives for the things I normally eat, I can just stop eating them.

But now I am feeling a little overwhelmed, because I'm not sure what I can eat.

Is there anything I can use to season soups and things besides bouillon? I see now that it has both sugar and MSG. :( I think vegetable soup would be a good thing for me.

I don't like the taste of sweet things, so I rarely eat fruit and never eat dessert. How would I know if I have candida overgrowth?

I think I will go to the international market tonight. What do you think I should buy as a staple food?

Thanks so much!

Season soups using bones - they are cheap and plentiful and sometimes free.

Use salt, pepper, herbs, veggies like onion, garlic, carrots.

You do need protein....beans, meats. Soups are great places to hide inexpensive tough cuts of meat.

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it does seem like an awful lot of manufactured foods, which are generally void of nutrients of any kind, and full of preservatives and chemicals and artificial this and that. Stick with whole REAL foods. Nothing that comes out of a pressed paper box, or in a shiny crinkly plastic bag. Nothing with ingredients lists longer than 2 or 3 ingredients. Peanut butter for instance should have one, two ingredients max! Peanuts, salt.

Avoid even packaged gluten free alternative foods. No breads, no crackers, no pancake mixes, no cake mixes, no cookies, etc etc etc. If you want those things, make them yourself from whole natural foods. Grind up nuts to make nut flour, don't use pre-packaged gluten free "all purpose" flour that have no nutritive value at all.

Your body's energy comes from the food you feed it. If the food you're eating has no nutrition in it, your body is going to be tired and worn out, no ifs ands or buts about it. Your muscles will waste away, you'll put on fat because your body needs to store energy away during famine, and your brain power dwindles because it needs food.

Check out some information on low carb whole foods diets like a paleo plan, or Atkins.

http://www.marksdailyapple.com/

http://www.atkins.com

I would also second the suggestion to be tested for additional auto-immune diseases like lupus, multiple sclerosis, Sjogren's, Grave's, Hashimoto's etc etc etc...any or all of these could give you the symptoms you've both been experiencing. So could Lyme disease, which is a tick born virus. Or even heavy metal poisoning from lead or arsenic, or heck even dehydration or sodium deficiency!

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For soup and othe ideas, check out allrecipes.com. Be mo drum of ingredients (it's just a general site after all, but you will get ideas on how to make things naturally and tasty (again - skip the recipes that use processed ingredients and stick to the basic ones.

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Oh I hate my auto-correcting iPhone. That's supposed to say be mindful of..!

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