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littlestephie

Has Anyone Else Been Through This?

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Hi there...I found this forum and I'm posting because I'm super desperate to find new ideas and see if anyone else has gone through what I'm going through. I'm 18 years old, I was diagnosed with Celiac disease on November 5th 2009 after being sick for a pretty long time, I have been on a strict gluten free diet since the day I was diagnosed, and I'm not getting better. I'm neurotic about cross-contamination and I am SUPER careful - I know that there is no way I am "accidentally" eating gluten. I've been tested for all of the typical things that hinder recovery from celiac disease - I have no other food allergies (I've had all of the allergy tests), no gallbladder diseases, no other autoimmune problems, nothing is showing up in my tests that would give me any reason to not be healing.

I have no energy. I live in a constant state of brain fog. I'm severely anemic but I'm recieving IV iron infusions on a weekly basis at the hospital. I have shortness of breath after any physical activity, even sometimes walking. I'm in pain all the time and I'm nauseous after every meal. I'm really afraid of eating because food makes me miserable. I'm not eating a huge variety of foods right now because there isn't much my stomach can handle...rice, lentil soup, scrambled eggs, and gluten free bread pretty much makes up my diet. I try to drink Carnation Instant Breakfast several times a day for calories but still I've lost a lot of weight. I'm not very tall, only 4'11, but I'm only 86 pounds and I just seem to keep losing.

Any ideas out there, is there something I'm missing? am I doing something wrong or is there something else I should be looking for? Does it really take THIS LONG to recover from Celiac disease? I've been scoped multiple times and the internal damage was pretty severe, but my doctor still thinks I should be recovering by now. I'm out of ideas and so is my doctor. Any advice is appreciated. Thanks.

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Okay, your situation sounds very familiar to me. I, too, was severely anemic and ill after getting a celiac diagnosis. I was so fatigued, I actually pulverized iron tablets and placed the powder under my tongue, hoping that sublingual iron would make me feel better. Well, I did feel better almost immediately, but my teeth instantly turned black. It seems that my calcium-deficient teeth sucked up all the iron and placed it where the calcium should have been. Like you, I ended up receiving iron intravenously.

Believe it or not, it took about 18 months before I felt "normal." I, too, followed a very strict gluten-free diet during that time. I guess it just took time for my gut to heal.

That said, I think that you should also be tested for a thyroid condition. The brain fog and other problems may be a result of Hashimoto's Thyroiditis (common in celiacs), so it might be worth your while to find out if your thyroid is acting up a bit. If not, perhaps more time is needed to repair your gut. I know how frustrating it is to feel ill, to be doing all the right things, and then not see any improvement. Hopefully, all will be well sometime in the next year--good luck to you!

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You really need to write Nestle about the Carnation Instant Breakfast. As of 2007 the ready-to-drink had a "natural flavoring" with a tiny bit of gluten, plus all the flavors were processed on the same equipment as the chocolate malt flavor which has barley malt and wheat flour.

http://www.dailystrength.org/c/Celiac_Disease/forum/964122-nestle-carnation-instant-breakfast

There are some celiacs who are very, very sensitive and that would be too much gluten and cross-contamination to keep from healing. Have you considered Ensure for nutrition instead? It's better formulated anyway.

I also wonder about your thyroid. The fatigue and brain fog could be the iron but it could also be hypothyroidsim.

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Sounds about like how I was!

I was diagnosed in August 2009. I got very careful about gluten, very fast, too. I had the allergy tests which only showed a few mild allergies, no other auto-immune problems or other organ issues. I had brain fog, no energy, pain, and nausea, constantly. Dropped weight like mad: I'm 60 pounds down from where I was in August. I started feeling this way within days of going gluten free.

This is what turned out to be MY issue - I don't know if it's yours, but I'll pass it on in case it helps!

First, my doc focuses a lot on celiac disease, so he sees a lot of us celiacs. As a result, he now has some 'standard rules' he gives out to his celiac patients based on what he is seeing. He has told me that not all of these are from studies, just observation, but they are not harmful, and they have definitely helped me.

1. Many celiacs seem to react to preservatives, dyes, and additives.

2. Many celiacs seem more prone to develop allergies or sensitivities to foods. (I stress the sensitivities here.)

3. Many celiacs have problems if they are eating genetically modified foods. Eating organic should help guarantee that you avoid genetically modified food. (The majority of corn and soy is genetically modified in our food, these days)

4. Most celiacs are lactose intolerant when they still have damage, and continuing to eat dairy will delay your healing. If you still eat dairy, I'd consider removing it for a while.

What my doc said about my case was this: every once in a while, you get a celiac who starts hyper-reacting to foods after going gluten free. If they avoid these foods for a while, then usually, within 6 months to 2 years, they can start to add them back in. The most common hyper-reaction is to have problems with EVERYTHING in the grass family. This is all the grains plus bamboo and sugarcane (amaranth, quinoa, and buckwheat are not in the grass family, however).

After cutting my foods to the bone and doing a food diary, I have come to very much trust my doctor on this. I cut out almost everything, wrote down everything I ate, and exactly how I felt, and when I ate almost nothing - and NO grains - suddenly the pain started spacing out to the point that I could connect it to foods. I drop the food, then the pain, the fuzzy headedness, goes away.

These are not allergies. They don't test positive for allergies at all, but they make me very sick if I eat them right now, and they've had noticeable effects. I had surgery recently and they gave me medication that had one of these 'bad' foods in them (corn). I ended up in the ER after surgery because I was so sick and in so much pain. My doc finally figured it out, took me off the pills that were supposed to be helping, and that's when all the pain went away.

I do not know what the heck is going on in my body so that these foods affect me this way. My doctors don't know either, but they have both seen the results and I'm lucky enough that they are working with me to avoid them and find me healthy foods to eat. We just all say that I'm obviously from Mars and leave it at that. ;) My few actual allergies (very low on the testing range) went completely crazy, over-the-top, too, so that if I even inhale near these foods I start having my throat close up.

In your case, I would seriously keep a food diary. It's recommended that you note down not only the foods, but the brands, as some veggies and fruits might have pesticides you react to, or companies might have contamination issues that bother you. Try to space out your foods so that you eat the same food a couple days in a row, and then the next couple of days, don't eat ANY ingredient that you ate the previous two days. It may help space out any reactions. Really, when you start having your whole body freak out, it's good to think outside the box, and one part of that is assuming that allergies aren't the only ones that will make your body freak out. You can meet many people here who have dropped foods because they caused pain and other problems, even when they tested negative as an allergy.

And all that said - if you wish to drop the grains, you'll need to be careful of corn. It's in everything, from iodized salt to baking powder. You have to do some research to avoid getting it with every meal, and you'll need a source of iodine, because it's in ALL iodized salt. I'd go for a liquid supplement, because almost all pills, of any kind, contain corn or a corn derivative (citric acid and xanthan gum are corn derivatives, for example). A good site to check out for corn sources is this: http://www.cornallergens.com/

On top of this? You could be VERY sensitive to gluten. Some celiacs are. My daughter has not been able to eat most gluten free products without getting at least a little ill - the gluten-free products often contain gluten, they just need less than a certain level to be called gluten free. It is a VERY small amount of gluten, but if you are unlucky, you may react. Like the carnation instant breakfast and the gluten-free bread would absolutely set off a reaction in myself or my daughter.

And if you ARE that sensitive? There's a few other things that can get ya. Toothpaste and lipstick are obvious ones, but your shampoo can get you, if it touches your lips when you rinse it off. Your dishsoap can get you if there is the teensiest residue on your dishes. Your laundry detergent can get you, if some remains on your towels and they dry your dishes. Anything that touches anything that touches your mouth can do you in, if you are sensitive.

So, for myself, this is where I'm at: after 10 months, we have found 9 foods I can eat safely without pain or reactions. I have a dietician who also thinks outside the box and she is working with me to try and find foods that I can eat to help create a nutritional diet, which I don't have yet. However, staying on these safe foods? My pain went away, the brain fog went away...I feel great, aside from some vitamin deficiencies we're still working on. And when I DO try the bad foods, the reactions get less severe the longer I stay off these things, so it seems hopeful that someday, I'll be able to eat the other foods again.

I really hope that you find the answer soon to your problems, and it is as simple as my solution was. It hasn't been fun, but it has been doable.

Oh....a few last things you could check out?

1. Heavy metal poisoning - it can cause hyper-reactivity. I don't know if the reactions show up on allergy tests or not, but it's something that was suggested in my case, as well.

2. Giardia - parasite that affects how you feel, and it is hard to test for.

3. (dietary) Fructose malabsorption - this doesn't sound like your case, as it tends to involve nausea and gut issues more than brain fog, but it might be a factor that could keep you from healing all the way. It's a condition that can come about after a person has already had problems in their gut, like active celiac disease. Googling this should find you some information on it pretty quickly.

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I agree with what others have stated, and would add the suggestion of some supplements. Two which helped me immeasurably are magnesium, and a 5mg sublingual methylcobalamin tablet (active form of vitamin B12). These eliminated all the pains and brain fog I was experiencing, plus corrected my sleep cycles, improved mood, and so much more. Also a multivitamin would probably be a good idea too, along with vitamin D3, and some omega-3s wouldn't hurt either.

It may also be helpful to skip the processed gluten-free foods for awhile, until you're feeling better. There may be some ingredients that your body isn't handling well.

As others have indicated, it can take awhile to heal. So stick with unprocessed foods, avoid wooden utensils, cast iron pans, and any other items which aren't smooth and non-porous. This includes strainers and colanders too. Hang in there and give it time, but the suggestion of a food diary might also be a good idea.

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Beans/legumes can also be contaminated on the farm or in harvesting. Are you making your own soup? Make sure you look through the lentils for any grains of wheat and wash them well before cooking. If it's canned soup, you should probably try cooking your own.

I also second the food diary and rotating in some new foods instead of the CIB, rice, and bread to see if that helps. Especially since you don't seem to be eating any produce-- cooked versions tend to be easier on the tummy. Some foods to try include:

well cooked sweet potatoes (substitute for the rice and bread)

cooked zucchini/yellow squash

cooked carrots

applesauce

cooked peeled pears

cooked apples, peaches

canned pineapple

Are you doing okay with fats? Gradually adding in a little more oil to your food can also be another source of calories IF you are digesting it. An rx digestive enzyme (for pancreatitis) may be helpful if you are not digesting fats. And endoscopies can (rarely) cause pancreatitis, so that may be a problem.

Ouch. You sound miserable, and I really hope that you manage to figure it out.

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Wow, thanks everyone for the quick responses. I'm at least glad to know that there are other people "out there" who didn't heal right away like the doctors say. My doctor told me I'd feel better in 4 weeks of being on the diet...obviously that isn't realistic and I feel a little better knowing I'm not the only person who isn't responding to the diet in the 4 week time period.

I was tested for a thyroid condition last year when the doctors were trying to figure out what was wrong with me. My T3 numbers were elevated - indicating a problem - but I re-tested a few weeks later and the T3 was normal. It was strange, but my doctor sort of dropped the idea once my numbers were normal the second time. Do you think it would be worth me looking into that again?

I didn't know that about the Carnation Instant Breakfast. I do drink the ready-made kind but the label says "gluten free" and "lactose free" so I assumed (perhaps wrongly) that it was reliable. What is the ingredient that contains traces of gluten? I was drinking Ensure, but my doctor switched me to CIB because it has more calories and I'm losing too much weight. Ensure only had about 250 calories and CIB has almost 400.

My doctor is a GI specialist but I don't think he actually sees that many Celiac disease patients. He has told me that I am his first "non responsive" Celiac case in his entire career...so he's basically just experimenting with different things and testing me for a bunch of random things that don't really make sense to me. I live about an hour away from Philadelphia...if anyone has any ideas of East Coast specialists to see I'd love to get a second opinion.

The dairy intolerance thing is sort of a moot point because I don't eat dairy...I don't eat much of anything. I do make my own soup - I try to eat lentils for protein and my stomach can't handle meat. I am also wondering if I'm just hyper sensetive to gluten. I'm not eating a lot of produce because I get frustrated and feel like I'm wasting my pain - I hate filling my stomach with things that are no calories. Every time I eat I feel like I have to make it count for calories...somehow I have trouble justifying fruits and veggies in my diet. :/ but maybe I just need to "get over" that.

I'm not quite miserable yet :) but I'm definitely freaked out. The weight loss issue is very scary to me (and my parents!). I feel like I'm wasting away. 86 pounds is not a healthy weight for an 18 year old girl. Thanks so much for all of the advice and for helping me think of some new ideas - I appreciate it so much. Sorry this post was so long, I was trying to respond to everyone's suggestions in one post :)

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Yes, definitely get retested for thyroid issues.

As for calories, it is also important to get those calories from the proper ratio of sources. In other words, some from protein, some from fats, and some from carbohydrates. Lentils are a very good source of protein, so keep that. Though as was mentioned, do pick through and rinse thoroughly before cooking. Ordinary green peas are also a very good protein source, and you can make the protein more bio-available by processing the peas in the blender (with enough water to cover) until smooth. That's how I make "instant" pea soup. Just add a few of your favorite seasonings, and heat on the stove or in the microwave. Peanut or sunflower seed butter is also a good source of protein. You can use pure pea protein powder in smoothies too.

But vegetables are very important to maintain the body. All those vitamins and minerals, carbohydrates, fiber, and yes, protein too. All the calories you can eat won't keep you healthy without the innumerable other nutrients which vegetables provide. Many can be put through a food processor, juicer, or blender, to make the nutrients more bio-available. Drink them like a V-8, or use as soup stock, or as a sauce on rice, beans, pasta, etc.

Coconut oil is a healthy fat, and it generally serves as more of an energy source than other types of fats. Add it to smoothies, spread on toast or include it in casseroles and numerous other dishes. It also helps elevate thyroid function. Some flax oil can be very helpful too, and works great as a salad oil or in many cold dishes. Never cook with flax oil, but it would probably be ok to add it to a warm/cooked dish just before serving.

If you're eating white rice, consider switching to brown. There are other grains which offer more protein however, such as amaranth, buckwheat, millet, sorghum, and teff. Quinoa is higher in protein than rice too, but it is quite bitter IMO. All of these will of course provide valuable carbohydrates too, as well as minerals, fiber, and other nutrients. But not everyone can handle grains at first, so do watch for problems from them - a good reason for the food diary.

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I didn't know that about the Carnation Instant Breakfast. I do drink the ready-made kind but the label says "gluten free" and "lactose free" so I assumed (perhaps wrongly) that it was reliable. What is the ingredient that contains traces of gluten? I was drinking Ensure, but my doctor switched me to CIB because it has more calories and I'm losing too much weight. Ensure only had about 250 calories and CIB has almost 400.

I take it you didn't click the link I provided to read the letter from Nestle?

You really, really, really need to write Nestle and see if they're still using a malt-based "natural flavoring". 1 ppm gluten is low enough to label guten-free and good enough for many celiacs but not all. Cross-contamination is also an issue that makes some folks sick. Did you start feeling worse when you switched from Ensure to CIB?

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I just wanted to add that Carnation Instant Breakfast makes me VERY VERY sick. The last I checked, it is made on lines along with gluten ingredients. I would steer clear of it!

I hear you on the weight problem, I actually weight less than you do O_O but I'm drinking Boost right now, which doesn't seem to have any effect on me negatively :) It's gluten free and has lots of calories.

Please let us know how things go for you! Keeping you in my prayers...

Janie

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I have to agree about the ready made Carnation Instant breakfast. I have consumed the powder mix without issues, just not the chocolate malt. By drinking the ready made stuff you may be defeating the purpose of drinking it if you are trying to gain weight. The gluten in it may be preventing you from absorbing what you need. If you can handle the soy go with Ensure or Boost.

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I just wanted to add two cents about the Carnation Breakfast drink too. After we went gluten free I thought it would be great for us to have for breakfasts. We were all sick by lunch. So, I'm not sure if it is gluten or malt in it, or how it is made, but I have stayed clear of it since. I had also bought a big container of Nestle chocolate milk for the kids and had to give it away after we had it once and the kids reacted..it contained wheat. I don't know about CIB. I have an 11 year old that is not gaining weight and he is 4 ft. 8 and weighs 69 lbs. I've been trying to get him to eat anything (limited to gluten free) to help him gain weight. While he is still growing, which is good, he's not gaining the weight. I heard that the lara bars are gluten free and children's Clif bars are gluten free...maybe that is something that might help with weight and protein?

I hope you get some relief soon. Oh, and I also had some elevated thyroid issues almost a year ago, then went to normal and it was dismissed. I'm sure our hormones are all out of whack with Celiac and I'm sure it takes time to improve, but even within a month, I've noticed major changes with my hormones getting back into balance. Keep an eye on those too. I am also Vit. D, iron and calcium deficient. I've been taking supplements for all those, but the one that made the most difference was Magnesium. It helps with energy and constipation. I was told to take it in a 2/1 ratio with Calcium. Mine reads Calc. 1000, Mag. 500.

For my friends that have been diagnosed with Autism or Celiac disease, I've heard it takes almost 2 years before they feel remarkably better and see differences. I hope it doesn't take that long for you, but I do hope you get something soon to help you see differences.

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http://carnationinstantbreakfastessentials.com/Products/Bottle/Rich-Milk-Chocolate/Ingredients.aspx

Is this what you are drinking?? Because this says "contains barley" right on the ingredients, so I don't see how it could also say "gluten free" on the bottle??

on further research I did find a product made by nestle which is more a nutritional supplement and I think that is what the original poster must be talking about, though she confused us all with saying it was just carnation instant breakfast. I'd still recommend calling to find out if they make this product on dedicated lines.

http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=b809ba49-cd57-4049-83b3-14d7bafb3ea4

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http://carnationinstantbreakfastessentials.com/Products/Bottle/Rich-Milk-Chocolate/Ingredients.aspx

Is this what you are drinking?? Because this says "contains barley" right on the ingredients, so I don't see how it could also say "gluten free" on the bottle??

on further research I did find a product made by nestle which is more a nutritional supplement and I think that is what the original poster must be talking about, though she confused us all with saying it was just carnation instant breakfast. I'd still recommend calling to find out if they make this product on dedicated lines.

http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=b809ba49-cd57-4049-83b3-14d7bafb3ea4

I went to the second link and this is what I found:

Water, Corn Syrup Solids, Sugar, Calcium Caseinate (From Cows Milk), Canola Oil, and less than 2% of Corn Oil, Soy Lecithin, Natural and Artificial Flavors (Contains Milk), Potassium Citrate, Calcium Citrate, Sodium Citrate, Potassium Phosphate, Salt, Magnesium Chloride, Choline Chloride, Sodium Ascorbate, Carrageenan, Beta Carotene, Magnesium Oxide, Taurine, Zinc Sulfate, Ferrous Sulfate (Iron), Niacinamide, Vitamin E Acetate, Calcium Pantothenate, Turmeric Color, Manganese Sulfate, Vitamin B6, Copper Sulfate, Vitamin B2, Thiamine Mononitrate, Vitamin A Palmitate, Folic Acid, Biotin, Vitamin D3, Chromium Chloride, Vitamin B12, Vitamin K1, Potassium Iodide, Sodium Molybdate, Sodium Selenate, Sucralose.

Have some sugar water and sucralose with your vitamin! Ugggh. The sucralose alone would make me feel sick and also they do have 'natural flavors' listed also which may be barley.

Seriously just drink a glass of water and take a vitamin and your system will be better off. Then add in more fresh meats, nuts, beans, fruits and veggies etc to get the extra calories that are needed.

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littlestephanie,

I am in a similar situation to you, but I am 5'2", 90 pounds (big sigh). I've been gluten-free for over a year and have gotten repeatedly frustrated at not feeling better as fast and dramatically as others. I recently gave up all grains and processed foods (the gluten free bread AND the breakfast drinks), and it does seem to have helped. I replace those with high fat nutrient rich foods. I am now taking corn free vitamins and I think that is making a really big difference too. Do you know what your genes are because I have read that Double DQ1's can be hypersensitive to even small amounts of gluten. Check out this website: www.(Company Name Removed - They Spammed This Forum and are Banned)

Good luck to you.

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Hey Everyone,

It's been a while so I just thought I'd update you on what's going on with me these days.

After switching doctors multiple times, having several exploratory procedures and biopsies of every organ, I was diagnosed with Lymphocytic Colitis - one of the microscopic colitises. My doctor has a hunch that this is what is behind my lack of getting better.I am very unfamiliar with this disease and need to learn how to manage it.

My symptoms remain unrelenting. Actually, I would venture to say they've gotten worse. I'm 81 pounds now, can't seem to get ahold of the weight issue, my diet is still pathetic - but somehow I feel a little better now that I have a diagnosis....

I have some new symptoms though - shortness of breath and a dry cough. I have been told that this could be because of my skinny-ness but I am requesting a full respiratory work up just to make sure it's nothing else. I've had the breathing issues for about a month now. Any suggestions would be welcome when it comes to this?

I was so sick that I had to pull out of college. I should be a freshman (I'm 18) and I went for a week - but the level of physical activity landed me in the hospital so I can't afford to push myself more. My family and doctors and I decided I need to take a year off. I took a medical leave of absence for an indefinite amount of time - so I can fully focus on recovery.

Thanks for all of your help/support. Let me know if, after reading this update, you have any other suggestions for me -

Stephie

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Hey Stephie,

Sorry about the problems. I think you already got some good advice about steering clear of Carnation instant breakfast products. To put it simply, any instant / ready to go foods are not especially good for us. Those kind of products are probably not really good for anyone, but they sell them anyway.

For somebody who is having weight issues, and not sure of all the different ingredients in foods, and medicines and beverages, and makeup, and critter food, and vitamins, spice blends, and food produced in a factory environment, it is probably a better bet to just stay away from all that junk.

You have a sensitive GI system, and you need to think about how to care for it. Stuffing it full of carnation instant crap is a bad idea. Sorry, not meaning to be critical, I had to learn all this myself after years of being stupid and suffering the consequences.

You are young, and probably haven't tried an elimination diet yet. Or tried making all your meals from whole ingredients cooked at home by you personally, not your relatives or strangers. If you take the whole foods approach, it will eliminate food colorings, preservatives, hidden gluten, and lots of label reading time.

It's a detective game doing this celiac diet, and it takes a little work to find your problem foods.

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I feel for you. My 13 year old son lost 20 lbs when he started reacting to something in his diet this spring. When you are that young and growing you should be gaining weight, not losing weight. It took a summer of elimination diets to figure it out. He had to eliminate his cheese, his maple syrup, his olive oil, and peel his fruits and finally he got better and started regaining that weight. It was unbelievably difficult, but well worth all that effort. I second what GFinDC said about a whole foods diet. Are you living at home with gluten eaters? That caused problems in our house. Finally the gluten eaters had to give up gluten at home. I hope things go better for you soon.

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I think it will be *really* worth it for you to see a nutrionist/dietician who is very familiar with celiac disease. It's hard to pinpoint problem foods when you're feeling sick all the time.

One suggestion - I was taking enzymes with my food at first, and feeling sick with every meal. Turned out the enzymes had some sort of gluten contamination - hence the feeling sick with every meal. Have you checked all your medication, vitamins etc are gluten free? Eliminated all lotions/lip balm/cosmetics/whatever that you put on your hands/face that may contain gluten? Shampoo? Toothpaste?

I'd also highly suggest dropping the gluten-free bread. Often they contain trace amounts of gluten from cross contamination. I can't even tolerate pre-cooked corn porridge, I'm sure it's produced in the same factory as all their other wheat products, and trace amounts do get in there.

Sorry you can't handle meats - have you tried lamb chops? Turkey? Prepare it *yourself* with no spices, just salt and pepper. Veges and fruit are packed with calories, especially the starchy veges. I have no idea why you're avoiding them? If you can't tolerate fruit - have you considered fructose intolerance, or Small intestine bacterial overgrowth (SIBO)?? Veges are very easy to make, just zap cauliflower, butternut or baby marrow in a microwave for 7 minutes on medium. They're packed full of nutrients and calories.

It's worth it for a week just to try - make all your food yourself, don't use any pre-made/factory prepared food. Rather eat stuff you can wash carefully under a tap and cook yourself. Guaranteed 100% gluten free.

If the main problem is nausea - have you had your gall bladder checked out??

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Ooh, just had an idea - have you tried blending up food? Like veges and fruit? Maybe that would make it more palatable for you, and easier for your stomach to digest and absorb??

Have you tried grains like buckwheat or quinoa?

Hope you figure out something that works for you soon :(

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I'm new to this and not nearly as sensitive as you or the others, but I just wanted to agree with continuing to monitor your thyroid and staying away from processed foods. Loved the coconut oil suggestion, I'm a big fan of it. Also, you're very young, but it couldn't hurt to have your other hormone levels tested. Be sure to get a full work up: CBC, antibodies, hormones, cortisol, etc. Even if your numbers are in the "normal range," it doesn't necessarily mean that it's normal for you.

Make sure you have a good doctor: one who listens to you, takes all your symptoms into account, and tries to think about what could be wrong - not just try to fit you into a neat little box based on one thing. I wish I could recommend a good one, but they are few and far between. I just started seeing one who is a licensed physician, but with a homeopathic approach. She's not a specialist, but specializes in hormones and actually tries to piece the puzzle together. Not sure I would recommend an endocrinologist as my personal experience hasn't been good. Maybe an osteopath with a sub-specialty in celiacs, gastroenterology or thyroid?

Also, whenever you have tests done, get a copy of the labs, xrays, etc. for your records. Look at the results yourself and do some research. This isn't to replace your doctors advice, it's just so you can educate yourself, ask the right questions and be proactive in your own health care. You'll be amazed at what you stumble onto that sometimes your doctors don't feel necessary to share with you. It'll also help you think outside the box and your ideas might give them ideas.

I hope you feel better soon!

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oops, just saw your update -- I'm glad you switched doctors until you found a good one :0). Have they considered asthma?

Weight gain: in addition to fresh veggies and grass fed meats: potatoes, sweet potatoes, butter (cream and salt only - unless you have a dairy issue), unrefined coconut oil, nut butters (nuts and salt only), fresh fruit (peel the non-organics), juiced fruits and veggies (supposed to be great for adding calories.

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I was really, really sick where everything I was eating was causing me stomach cramps, then I went on a SIBO diet and my symptoms started clearing up. I still don't have a formal diagnosis but I am continuing to treat myself for intestinal overgrowth.

Intestinal issues need to be treated through diet. There's no "easy" cure. I suggest you research a good diet for colitis, then implement it, and stick to it. It won't be easy, but you now have the time to dedicate to your health. You will get better, I promise, if you commit to putting the right foods into your body.

I would suggest that you immediately stop eating processed foods of any kind, including gluten-free bread. Our bodies were not designed to eat processed foods, so they are hard for us to digest. You will need a diet of whole foods to get better.

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oh poor steph!

Other ideas:

-a referral to a nutritionist who works with GI patients

-thoughtful supplementation

-setting a weight point where they introduce some IV nutrition

-acupuncture for the lungs and stress

-low fiber, cooked foods only

-mashing things, especially if your stomach (rather than intestines) hurts

-very careful research about any medications

good luck.

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