Frustrated ! Any Help Welcomed

[monika]

I'm hoping somone will have any suggestions.

For a little over 2 weeks now I have been on this totall crazy diet becasue I have so many food sensitivites that were creating horrible damage to my stomach. So I have switched to avoid all those foods but it ridiculously hard.

Here is the list:

All Spice Asparagus Oysters Wheat Chinese Cabage Orange Roughy Watermelon

Soy Bean Butter Milk Peach White Mushroom Cow's Milk Parmesan Chees Whey

Casein Cherry Pike Anise Gluten Peanut Yogurt

Cottage Cheese Potato Baker's Yeast Horesradish Plum

Flounder Grouper Salmon Brewer's Yeast Kiwi Rye

Iceberg Lettuce Lemon Balm Swiss Cheese Caraway Mahi Mahi Spelt

Mango Orange Trout American Cheese Mozzarella Cheese Tomato

Dr. Says it's for the rest of my life and I questioned about Goat's Milk but he said no Dairy of any kind.

I've been eating fruit, almonds rice, and plain meats. I've been getting horrible cravings and it's really hard but I've been doing it. Any tips?

THANKS

[lynnelise]

What kind of testing did the doctor do?

I've seen that a lot of celiacs start out with a lot of foods off limits but actually are able to add some back without reaction after their intestines have healed.

[ravenwoodglass]

Can you add in some veggies that you tolerate? You may want to add some sweet potatoes, you can eat those a variety of ways like cutting them into fry shapes and baking with a bit of oil or zap or bake and put a bit of brown sugar on them. It can be hard to deal with cravings at first, I didn't see chocolate on the list perhaps a bit of dark chocolate might be a tasty treat. After you have been feeling better for a while you could try adding back in some of the items in pure form for a week or so and see if you tolerate them. For some of us after we have healed gluten free we are able to add back in some items that we didn't tolerate before we went gluten free. I hope you are starting to feel better soon.

[monika]

What kind of testing did the doctor do?

I've seen that a lot of celiacs start out with a lot of foods off limits but actually are able to add some back without reaction after their intestines have healed.

They did a GI test. What they told me is that all these foods are making my stomach lining swallen and that is the reason for many of my illnesses becasue I am not getting any vitamins from anything I eat because of that.

[monika]

Can you add in some veggies that you tolerate? You may want to add some sweet potatoes, you can eat those a variety of ways like cutting them into fry shapes and baking with a bit of oil or zap or bake and put a bit of brown sugar on them. It can be hard to deal with cravings at first, I didn't see chocolate on the list perhaps a bit of dark chocolate might be a tasty treat. After you have been feeling better for a while you could try adding back in some of the items in pure form for a week or so and see if you tolerate them. For some of us after we have healed gluten free we are able to add back in some items that we didn't tolerate before we went gluten free. I hope you are starting to feel better soon.

Yeah I have been adding some veggies and other fresh foods but the only thing that really holds me back is that i live in a dorm and all I have is a microwave and a really small refigerator. I bought a rice cooker but I'm not really suppose to have it in there. The good thing is that I am moving to an apartmenht soon. So that should really help with food options.

[Katah]

So, if I'm getting this all, the groups are (GLUTEN TYPES- wheat, gluten, brewer's yeast, spelt, rye)

(DAIRY- butter, milk, cow's milk, parmesan cheese, swiss cheese, american cheese, mozzarella cheese, cottage cheese, yogurt, casein), (RANDOM VEGGIES AND FRUIT- peach, mushrooms, cherries, plums, kiwi, mango, tomato, asparagus, chinese or nappa cabbage, watermelon, orange, lemon balm, ice berg lettuce), (OTHER- INCLUDING FISH AND RANDOM GRAINS/yeast- oysters, flounder, grouper, salmon,mahi mahi,pike, trout, carraway, horseradish, potato, peanuts, soy beans, anise, yeast-including brewer's and baking yeast)

So, gluten free, dairy-free, yeast-free, soy-free,fish-free,and then other random ones. What I suggest is that if baking, try using arrowroot starch or tapioca instead of potato starch. Instead of soy flour, try something along the lines of another fry flour, like millet, amaranth, or corn flour. If you find eggs are a problem, use a flax replacer if possible. Instead of all spice, try using a cinnamon, clove, and nutmeg. Instead of horseradish try other spicy things. Avoid fish at all costs, and just be selective with your vegetables. Prepare food ahead of time. Try looking up yeast free bread recipes. I use this really great flax and almond bread recipe that uses baking powder. If you can in fact have almonds, then try it. I'm not sure because you listed peanuts. Try rice milk if you can't use almond milk, and you can use coconut milk in things like puddings instead of soy. They're delicious. MAKE YOUR OWN FOOD and whenever you can. It always tastes better, and you'll realize soon how you like to make things. Try making yeast free cinnamon buns (baking powder-you can even make your own), you can use an all-purpose gluten free flour blend (provided it doesn't have soy or potato), or just find a recipe for a flour blend online and subsitute 1:1 flour blend for white flour. There are also recipes you can find.

[shadowicewolf]

Yeah I have been adding some veggies and other fresh foods but the only thing that really holds me back is that i live in a dorm and all I have is a microwave and a really small refigerator. I bought a rice cooker but I'm not really suppose to have it in there. The good thing is that I am moving to an apartmenht soon. So that should really help with food options.

Sweet potatos, you can cook them in the microwave and add a little brown sugar and vula a good meal in and of itself. Carrots with honey and cinnimon is a good treat (can do the same with sweet potatos). Carrots and peanut butter.

[kareng]

They did a GI test. What they told me is that all these foods are making my stomach lining swallen and that is the reason for many of my illnesses becasue I am not getting any vitamins from anything I eat because of that.

This sounds a bit odd to me. What kind of test of your gastrointestinal tract told them all this? You might want to get a copy of your medical records. Maybe post it here if you want. We all love to give opinions. Maybe some others have had the test and could help you.

[mommida]

Enjoy Life, Ener-G, Cherrybrook farms, and some Ian's, products are for multiple food allergies.

I really love The Allergen-Free Baker's Handbook by Cybele Pascal.

Were you diagnosed with Crohn's?

I do suggest you keep a food journal to see if you have other sensitivities, and to see if you are able to tolerate foods after you have healed on your diet.

[clsx2]

What about tuna mixed w/mustard and then I scoop it w/ bell peppers or celery. You can cook quinoa in your rice cooker 1 cup quinoa and 2 cups water.

I have been able to add tomatoes back into my diet after going gluten free, so as already mentioned I bet you will be able to add some/most of these foods back in once your stomach heals. Most likely the gluten was causing started the damage and now your stomach reacts poorly to multiple foods.

Oh what about nutella and jelly sandwiches...

[monika]

Thanks Guys!

this really helps alot.

Well see the thing is I've been doing the diet for about 2 months now and i feel great! the weird thing is that I have eaten food I'm not suppose to and nothing happens. I feel fine. If anything I feel a lil better. So that's why I'm just a little confused. I know if I were to eat regularly everyday I will start feeling sick. so I wont go back to what i used to eat but I think from time to time I will have something.

[monika]

.

Were you diagnosed with Crohn's?

I was just told that I was sensitive to these foods and I had to avoid them for the rest of my life :/

[kareng]

I was just told that I was sensitive to these foods and I had to avoid them for the rest of my life :/

I just posted on your other thread. What test did you have done? This doc sounds a bit suspicious. This might be why you are OK with some of these foods.

[monika]

I just posted on your other thread. What test did you have done? This doc sounds a bit suspicious. This might be why you are OK with some of these foods.

He ran the GI testing.

I just remember going into the doctors to get a statement for for me to be let out of my meal plan at the University and next thing I knew they were drawing blood like crazy. I think it was 3 big tubes and 2 small ones. They told me we are going to get you tested for food allergies and the results will be get here in a couple of months.

[kareng]

He ran the GI testing.

I just remember going into the doctors to get a statement for for me to be let out of my meal plan at the University and next thing I knew they were drawing blood like crazy. I think it was 3 big tubes and 2 small ones. They told me we are going to get you tested for food allergies and the results will be get here in a couple of months.

So he just did blood tests, no actual GI testing? No endoscopy? No Xray? Etc.

How does he even know that your stomach is swollen or irrated if he didn't look? I don't see how blood work would tell him that.

[GlutenFreeManna]

I was just told that I was sensitive to these foods and I had to avoid them for the rest of my life :/

I agree with kareng. This doctor could be a quack. Any dr that is telling you to avoid all those foods for the rest of your life but doesn't explain the testing or what he is diagnosing you with is suspicious. It IS possible to have many food allergies but they should have told you what type of allergy testing they were doing and what the results said. When I had allergy testign my dr was able to tell me the number for the positive wheat test and wha tthe reference range was (in other words how high of a positive it was). Get a copy of your records ASAP. If you live in the US they are required by law to give them to you. Then you can take them to another doctor for a second opinion or at the very least call your dr and ask some more questions. Some of the things you are saying he said make no sense even if you DO have food allergies or intolerances.

[T.H.]

...they were drawing blood like crazy. I think it was 3 big tubes and 2 small ones. They told me we are going to get you tested for food allergies and the results will be get here in a couple of months.

It sounds like maybe he did the tests for elevated IgG levels or IgE levels, or both - that's typically what's done with blood tests for food allergies. That's what I had done - lots of blood tubes, and the results took about that amount of time. You definitely want to get a copy of the results.

And IF that's what he did? These are really prone to false negatives and false positives and can definitely change over time. I've had my GI and two allergists mention this, and they all said that it was simply a place to start, and then you can keep a food journal to keep track and make sure nothing else is making you feel crummy, and also for if you try and add back in some of the foods after you've recovered- try a small bite, see how you feel. And if that's good, try a larger amount for a couple days in a row.

It may be that you can have a little bit of some of these with no trouble, maybe once a day, a week, once a month, etc... Or it may be these are no good, just as advertised.

However, regarding sensitivities - there are no tests to determine if we are sensitive to a food other than trying it and seeing how you feel. No tests exist. There are only two intolerances we can test for: fructose and lactose. The rest are also from food journals, as well.

An endoscopy is a good way to detect inflammation, but there is no way to determine what it's from, merely good guesses based on common possibilities. Allergies, intolerances, and sensitivities are some. There are also diseases and infections that can cause inflammation there too, as I understand it.

So while your doctor may believe that you have sensitivities and these are causing inflammation, it's honestly going to have to be just a guess. Maybe an educated guess, but still a guess. And really, most of us are just commenting on this, I believe, because we've been there right with ya. :-)

Re: the dairy - if you are lactose intolerant, all dairy of every mammal has lactose, so all dairy including goats would be out, yup. However, the test for this is a breath test. Did he do one for you?

If it's an allergy to dairy, there is a high likelihood off cross-reactivity to goat and sheep milk if you react to cow's milk, but it's not an absolute. Cheese sensitivities, however, tend to involve certain substances that develop in the cheese, I think? So that would mean no cheese of any kind, no matter the dairy type, if you react to cheese.

I think - that's one area I'm not as well informed in, I'm afraid.

The ones to be very concerned about would be foods that had a very high IgE rating, as those are the type that you might have a very extreme allergic reaction to. But you'll need to see the results to see what they were, ya know?

That said, and false negatives and positives aside - if you are feeling better, than obviously SOME of these foods are no good for you, right?

When I went through this, I dropped all the high IgG and IgE foods, as recommended, and I felt better. My list was not as extensive as yours, but I had some other food limiting issues too, so I was on an extremely limited diet. Empathy from over here, in other words!

So far, for me at least, the majority of the foods that tested as 'bad' on the blood tests seem to make me feel crummy, so I'm still avoiding them. Some were not on the test as bad, but I coincidentally dropped them when I dropped all the other foods. without a food journal, I don't know that I would have figured out I was having trouble as I added them back in.

Okay, and now onto practicalities - what to eat! :-D

For tips - it helps if you find one thing that you LIKE to eat, and use that as a 'no, don't cheat on the diet!' preventor. Like, a nice sweet, a special honey, a certain dish, anything. Make extras of this so when you feel yourself wavering, you can just pop it in the oven/microwave/out of the fridge and get through it.

I used to leave sticky notes around the house, reminding myself of how good I feel on good food, or how bad I'll feel if I cheat - stuck 'em on the fridge and other places that would help.

I started a food blog to try and make all the food hunting something a little more than just food. Took pictures, messed around. I didn't do it all the time, and was not always energetic enough to get it done, but sometimes it helped, too.

For products:

I think this product doesn't contain any of your bad stuff: Nomato, at least for the ketchup. It's a tomato substitute for ketchup and barbeque sauce. I haven't tried it, but I've heard good things.

Open Original Shared Link

Another substitute product is one for soy sauce: coconut aminos. I can find some here in a Whole Foods, in the soy sauce section. It cooks like soy sauce, but is a little sweeter (again, haven't been able to try it, but my kids loved it in our stir-fries).

Rice milk: If you have brown rice, you can make homemade rice milk - it takes 1 cup brown rice, 8 cups milk, and then boil/simmer it for 3 hours until it's sludge. Get a blender. Fill it half-way with clean water, the other half with the rice sludge, and blend that puppy. Strain it through cheese cloth or a couple times through a mesh strainer, and you've got rice milk. You can add oil and a sweetener for better taste/texture. It's about twice as thick as commercial rice milk, but much cheaper, and it can go with lots of foods that you need a slight thickener for where you might have used milk before. Some people dilute it before using.

Some recipe ideas:

Meat loaf - Ground beef, whatever flavorings you can have, and brown/white rice (already cooked). Mix in some nomato ketchup or some pureed red-fleshed sweet potato (pre-cooked and peeled) for sweetness. Maybe some agave syrup or honey if you think it needs it. Bake it and you've got meatloaf.

Soup - any meat, some veggies, spices and herbs. Throw 'em in a pot, let 'em simmer, and you've got soup. YOu can use a broth if it doesn't have any of your bad ingredients, and you don't have to cook so long. Cooked millet or quinoa added to your bowl just before eating can add some more bulk to it. Just play with whatever you've got, from greens to turnips. Chili peppers are always nice with this in the beginning - the spiciness can sometimes mask a lack of flavor, heh. For a more asian flair, you can make the broth half broth (chicken, usually) and half coconut milk. This tastes really nice with some spicy flavor (like chilie, salt, mushrooms, lemon grass, and chicken pieces. Basil ain't bad either.

roasted root veggies - carrots, sweet potatoes (the pale fleshed ones are less sweet), or even turnips or parsnips. Add some oil, salt, and pepper and roast in the oven. Turns out fine.

Hummus and falafel should be good, especially if you make it yourself. Between them both they have olive oil, salt, garlic, chick peas (processed in a food processor or mortar and pestle), lemon, and parsley. If you've never had falafel, it reminds me of exotic hush puppies, honestly. Goes nice with a cucumber salad - I make marinated cucumbers with something sour (lemon or vinegar), something sweet (honey, agave syrup, or sugar), an oil, and some herbs like dill or oregano. Let it sit for 6 hours and it's nice and tangy.

stir-fries - lots of these taste good with the coconut aminos and eaten over rice. Bok choy stir fried with chopped garlic and coconut aminos is quick and easy, for example.

Pale sweet potatoes, cut into fries and baked, have helped my craving for french fries.

Snacks

raosted chickpeas: canned chickpeas or soak dry chickpeas and cook for an hour. Add a little olive oil, salt/pepper or other spice combination. spread on a cookie sheet and bake until crunchy. They end up rather like home made corn nuts.

coconut balls: shredded coconut, a little honey or agave syrup, and whole grain amaranth. Mix together and form into little balls, put on wax paper in the fridge to firm up. It's a bit tricky to get everything sticky enough to form a ball, but I've seen it done nicely (cough - although I'm still working on mine, LOL).

That's all that comes to mind at the moment. Good luck! I won't say it's easy, but oh goodness does it feel amazing to not feel sick all the time! :-)

shauna

[viviendoparajesus]

My allergy doctor said the blood tests are more accurate for kids than adults because it shows you had an issue at some point but you may have out grown it. also with celiac's and gluten intolerance the intestines leak food so it gets in the blood stream and the immune system reacts so then you have allergies. according to dr carolee bateson-koch (book: allergies) you can heal allergies and part of the process is healing the intestines. so a diet that would give the intestines time to heal would be important. then hopefully you can add some of the foods back in. that is my goal. i have a ton of allergies most of which are foods i used to eat and not notice a problem. i think as the gluten did the damage it made the food leak out and i got allergic to it. if food is digested properly you should not have an allergic reaction to it because it is broken into the amino acids and other particles the body recognizes (dr bateson-koch & dr kharazian(book: why do i still have thyroid symptoms when my lab tests are normal)).

i do not see how the doctors would know what was causing the stomach damage. they seem to have a hard enough time identifying gluten as causing damage let alone other foods. not to mention the inaccuracies of blood tests it is hard to tell what is causing problems. i think you need to heal the intestines and then try an elimination diet and reintroduce the foods and use a food diary. i was trying to avoid doing a dairy but it will really help in making connections between foods and symptoms.

i have lots of foods i cannot eat and i think a couple things help. focusing on what i can have especially the things i love that i am allowed to eat. i think it would be helpful to look at the food groups as the one poster broke it down because to look at all the things like you have on here i would like to meet the person who would not be overwhelmed and intimidated by such a list.

it does not sound like they did a casein intolerance test but if they did and it was positive. it is a protein in all dairy products and even some non dairy alternatives. if you are intolerant that will not change and to me it is not worth the damage even though i loved yogurt, cheese, and ice cream. you can look at your symptoms but i did not notice a difference and there can be silent internal damage. so i am a fan of getting tested and if you are intolerant avoiding it even though it stinks. daiya has good cheese. i am still looking for a yogurt and yeast free cheese. i found a great cashew butter agave nectar ice cream pricey but oh what a treat. i never liked regular milk so having almond milk is amazing. some people like coconut, rice, or soy. i was told not to have soy since it can also cause problems for people with gluten intolerance.

sounds like my diet only i could not do rice until recently.

some cravings i ignore. some i find substitutes for.

best wishes!

[monika]

So he just did blood tests, no actual GI testing? No endoscopy? No Xray? Etc.

How does he even know that your stomach is swollen or irrated if he didn't look? I don't see how blood work would tell him that.

Yeah he just shopped my blood to Austin i think and got the results with a book rating my sesitivities to foods and how i need to avoid. Other than that I was just given the book and shoved out the door.