Having Trouble Accepting The Diagnosis Of Celiac And Allergies To Food

[applecore]

I have been diagnosed with Celiac disease and many other food allergies, including rice, diary, egg, etc. etc. I have been fighting hashimoto disease for the last year and haven't done much with the celiac as I didn'thave a lot of energy to try to cope with that two. My thyroid for the first time has tested this week in the normal range. I am going to a holistic MD who has given me testing and also a regular MD who tested me for celiac and said I had it. My tests from the holistic MD were done 1 year ago when the thyroid stuff started. I had RAI and then became hypo and anxious and depression and all that. I am still having a little problem with the anxiety and depression and am taking loraxapam and some supplements for the depression. My problem is it isi overwhelming me in how to eat. I can't afford a dietician, I have already been to one and she didn't know much about celiac more about diabetes and insurance doesn't pay for any of this. I have found a friend who is a neutritionist and has recommended I read "the Maker's Diet" which I am reading but it is a drastic change in the way I eat also. I am confused, overwhelmed and physically drained from all of these battles, past and recent. What are the experiences of anybody on this forum to get started on what to do and who to go to. I was referred to an allergist who would give me shots to help me to be able to eat more foods, but he will not take me because I have medicare and he can't charge me his $400 fee. I am willing to pay it but he said that is against the law so he won't take me. Is there anyway that I can just learn to eat by myself. I am taking a lot of supplements for my stomach, depression from the Holistic MD. Any suggestions would be so helpful as I am rather desperate at this time. thank you Linda

[gfgypsyqueen]

Hi Linda,

You sound like you are overwhelmed, but at least you now know what the problems are. I understand the overwhelmed feeling of figuring out this whole mess. My family also has a variety of food allergies (peanuts, tree nuts, dairy, wheat, shellfish, and possibly eggs) in addition to Celiacs. It is hard to add a new food allergy and watch you list of available safe foods shrink. But within a few weeks, you will have your diet figured out better and it won't be so bad. Here is what I would try.

First, don't focus on going to the allergist right now. Once you get the diet figured out and stay on all of your safe foods for a while, your body will to heal on its own. So you may not keep all those allergies. It seems like most of us on this site who started out with depression issues had them go away or at least lesson once the gluten-free diet was well established. So, you may find that some of your general health issues might settle down within the next year. That is a ray of hope

Second, don't bother with a dietician. Everytime I have gone to a dietician, I ended up educating the dietician. They had no info for me. So I do not have a positive experience here. Other people may have had better experiences. If you do go to one, interview them over the phone to make sure they had adequate knowledge of all of your diseases.

As for eating, you need gluten-free/CF (casein free) and egg free. Those will be the easiest to find. Once you get foods that are gluten-free/CF and egg free, check the item for rice and your other allergies. I know nothing about hastimoto's disease, so take this info and then filter out what does not work due to the other health issues. There are more options than you think. I found the trick to dairy free (casein free) is to look for vegan foods for cheeses, butters, etc.

My kids love:

English Bay milk it is soy free and rice free.

Earth Balance butter substitute. That is the only butter we use.

Cherry Brooke Kitchen mixes are gluten-free/CF, egg free, and nut free. You'll have to verify the rice.

Namaste has great mixes too.

Bob's Red Mill flours are fairly easy to find.

Toffutti brand is great for dairy substitute.

Hormel Bacon

Oscar Myer hot dogs are gluten-free/CF and egg free.

Boar's Head deli meats. (Note: Not all deli meats are dairy free so read labels.)

Until you feel comfortable with all the products you can and cannot eat, stick to whole pure foods. Fresh meats, fresh fruit, etc. Then slowly add what you have verified are safe foods to your diet. Call your local grocery store and ask for a list of their store brand products that are gluten-free. Ask how they label for the top eight allergens. (That will show you the dairy and egg items.) Publix, Kroger, and Wal-mart are very good. Wal-mart has their suppliers label the product clearly if it is Gluten free. That always helps

The way I started is by

1. Make a list of everything that you currently use from cosmetics, to bath products, to foods, etc. Either call the manufacturer of search the web to see if it is safe for you.

2. Then make yourself a shopping list that stays with you for grocery shopping (Brand and foods that are safe and which ones actually taste good.)

3. Next make a list of all of the items and hidden ingredients that you are allergic to. (You will eventually know these items by heart.)

I hope some of this helps you and makes the whole thing less overwhelming. Feel free to ask more questions and search this site for more information that will help you.

[rumbles]

Hi, Linda,

Welcome to the forum! This is a great place for information, support, and to meet people that

are learning about or have been living with celiac disease and gluten intolerance. Many of us

live with food allergies, and can help with ideas and suggestions. A bit of friendship and laughter

never hurts along the way either, and both of those can be found here!

In the beginning, celiac disease and diet restrictions can be overwhelming, but with a little time,

a little patience and a bit of practice, the diet can become second nature. The best advice that

I have seen, and the best that I can give, is to start slow and steady. By that I mean start with

a very basic and natural diet: natural whole foods - fruits, vegetables, meats without sauces and

additives. Melons, berries, apples, oranges, bananas, varied fruits, depending on what you can

tolerate and what you like. Whole vegetables from the produce section of the market, or canned

vegetables (without sauce, - always read the label before buying), meats without added flavorings

or seasonings (again, read the label before buying). Your digestive and immune system has been

overworked trying to fight off the effects of gluten, - you need to give them a basic diet and time

to heal. Over time, you will get use to which manufacturers are committed to labeling any gluten

in their products, and to learning how to read ingredient labels and how to recognize the different

words that indicate or suggest that there may be gluten in the product. Over time, the ingredients that you will learn that you can use will eventually expand enough to fill a pantry. Start slow,

don't rush, but realize that that time will come with a bit of practice and patience.

You may find that the symptoms from Hashimoto's, including the fatigue and depression, may

ease up after being on the celiac diet for a while. I was one of those kids that was diagnosed

with "sprue" when I was young, being told that I would grow out of it. By the time I was out

of high school, I was diagnosed with Hashimoto's thyroiditis and polycystic ovarian disease.

Twenty years later, continually fighting fatigue and a host of other symptoms and not knowing

that I was still under attack from gluten, I developed a benign tumor in my thyroid and had to

have the thyroid removed. For ten years after that surgery, I battled an army of symptoms,

until I learned that I had celiac disease, and went on a gluten free diet. I saw some pretty

immediate results (within four days the fatigue started decreasing, mouth sores cleared up,

aches and pains diminished, depression started lifting, my mood definitely improved), then

over the next six months, symptoms that I thought would be with me for life (gastric-reflux,

ovarian cyst bleeding, various pains, pins-and-needle sensations) started decreasing and

eventually going away. As time when on, I began feeling like an entirely different person.

For the first time in my life, I found out what it feels like to be healthy. It was at that time

that I truly realized just how interconnected these diseases can be, and how what now seems

like a somewhat simple change in eating habits has drastically changed how these diseases

effect (or I should say no longer effect) me.

You can do this. You have the opportunity to take back control of your life and to be able

to feel healthy. Start with small steps. Start with a basic diet, and spend time here reading.

You'll find information on which product manufacturers will always label if there is gluten in

their product, what restaurants may or may not be gluten safe, where local support groups

are, different diets and how they are working for different members of this forum, recipes,

things to do and glimpses into how others are learning to live gluten free. There is a wealth

of information in this forum, and it's here for you when you are ready and when

you need it.

Best of luck, and best of health to you!

Pat

[applecore]

Hi Linda,

You sound like you are overwhelmed, but at least you now know what the problems are. I understand the overwhelmed feeling of figuring out this whole mess. My family also has a variety of food allergies (peanuts, tree nuts, dairy, wheat, shellfish, and possibly eggs) in addition to Celiacs. It is hard to add a new food allergy and watch you list of available safe foods shrink. But within a few weeks, you will have your diet figured out better and it won't be so bad. Here is what I would try.

First, don't focus on going to the allergist right now. Once you get the diet figured out and stay on all of your safe foods for a while, your body will to heal on its own. So you may not keep all those allergies. It seems like most of us on this site who started out with depression issues had them go away or at least lesson once the gluten-free diet was well established. So, you may find that some of your general health issues might settle down within the next year. That is a ray of hope

Second, don't bother with a dietician. Everytime I have gone to a dietician, I ended up educating the dietician. They had no info for me. So I do not have a positive experience here. Other people may have had better experiences. If you do go to one, interview them over the phone to make sure they had adequate knowledge of all of your diseases.

As for eating, you need gluten-free/CF (casein free) and egg free. Those will be the easiest to find. Once you get foods that are gluten-free/CF and egg free, check the item for rice and your other allergies. I know nothing about hastimoto's disease, so take this info and then filter out what does not work due to the other health issues. There are more options than you think. I found the trick to dairy free (casein free) is to look for vegan foods for cheeses, butters, etc.

My kids love:

English Bay milk it is soy free and rice free.

Earth Balance butter substitute. That is the only butter we use.

Cherry Brooke Kitchen mixes are gluten-free/CF, egg free, and nut free. You'll have to verify the rice.

Namaste has great mixes too.

Bob's Red Mill flours are fairly easy to find.

Toffutti brand is great for dairy substitute.

Hormel Bacon

Oscar Myer hot dogs are gluten-free/CF and egg free.

Boar's Head deli meats. (Note: Not all deli meats are dairy free so read labels.)

Until you feel comfortable with all the products you can and cannot eat, stick to whole pure foods. Fresh meats, fresh fruit, etc. Then slowly add what you have verified are safe foods to your diet. Call your local grocery store and ask for a list of their store brand products that are gluten-free. Ask how they label for the top eight allergens. (That will show you the dairy and egg items.) Publix, Kroger, and Wal-mart are very good. Wal-mart has their suppliers label the product clearly if it is Gluten free. That always helps

The way I started is by

1. Make a list of everything that you currently use from cosmetics, to bath products, to foods, etc. Either call the manufacturer of search the web to see if it is safe for you.

2. Then make yourself a shopping list that stays with you for grocery shopping (Brand and foods that are safe and which ones actually taste good.)

3. Next make a list of all of the items and hidden ingredients that you are allergic to. (You will eventually know these items by heart.)

I hope some of this helps you and makes the whole thing less overwhelming. Feel free to ask more questions and search this site for more information that will help you.

I am so new I don't know if this is where I type my reply to you or not. Forgive me if it's wrong. If you could see me right now I am crying so hard it is hard to type because I have a place where I can ask questions and get advice. I belong to the the MedHelp thyroid forum and it has literally brought me through the worst of getting my thyroid straightened out.

I don't mind getting the gluton free or even egg free but the rice makes it difficult. I decided to take everything on my list which he gave me which is on a scale of 1-5 and above and eat everything that is 3 and below. Rice is a 3. The things that are in 4 and 5 are banana, barley,egg white, egg yolk, green beans, malt, oat, peanut,wheat,bakers yeast, black pepper. I don't know what a-lactalbumin or B-lactoglobulin is but they are 3. so are tomato rice, casein, cocoa, cheddar, 2's are apple, cabbage/corn/garlic,strawberry,sunflower,tea , 1's are beef, carrot, coconut, lettuce, mushroom, orange, pea, pork, potato, soybean,, 01's are chicken, coffee, shrimp, and 0 is tuna. These are the things they said I tested for.

I thank you so much for your wonderful list and advice. I don't want to change too much as I am not a weird food eater but will do as you suggest and try it. Do you take a lot of supplements. Some time I will list them and see what you think of them. It is a lot. Of course some are for the depression. SAMe - L-5HTP and the rest are for the stomach. I can't say thank you enough or how happy I am to find this site and people like you and the other peson that answered me. I was praying for any answer and I think God is giving me one. Linda

[applecore]

Hi, Linda,

Welcome to the forum! This is a great place for information, support, and to meet people that

are learning about or have been living with celiac disease and gluten intolerance. Many of us

live with food allergies, and can help with ideas and suggestions. A bit of friendship and laughter

never hurts along the way either, and both of those can be found here!

In the beginning, celiac disease and diet restrictions can be overwhelming, but with a little time,

a little patience and a bit of practice, the diet can become second nature. The best advice that

I have seen, and the best that I can give, is to start slow and steady. By that I mean start with

a very basic and natural diet: natural whole foods - fruits, vegetables, meats without sauces and

additives. Melons, berries, apples, oranges, bananas, varied fruits, depending on what you can

tolerate and what you like. Whole vegetables from the produce section of the market, or canned

vegetables (without sauce, - always read the label before buying), meats without added flavorings

or seasonings (again, read the label before buying). Your digestive and immune system has been

overworked trying to fight off the effects of gluten, - you need to give them a basic diet and time

to heal. Over time, you will get use to which manufacturers are committed to labeling any gluten

in their products, and to learning how to read ingredient labels and how to recognize the different

words that indicate or suggest that there may be gluten in the product. Over time, the ingredients that you will learn that you can use will eventually expand enough to fill a pantry. Start slow,

don't rush, but realize that that time will come with a bit of practice and patience.

You may find that the symptoms from Hashimoto's, including the fatigue and depression, may

ease up after being on the celiac diet for a while. I was one of those kids that was diagnosed

with "sprue" when I was young, being told that I would grow out of it. By the time I was out

of high school, I was diagnosed with Hashimoto's thyroiditis and polycystic ovarian disease.

Twenty years later, continually fighting fatigue and a host of other symptoms and not knowing

that I was still under attack from gluten, I developed a benign tumor in my thyroid and had to

have the thyroid removed. For ten years after that surgery, I battled an army of symptoms,

until I learned that I had celiac disease, and went on a gluten free diet. I saw some pretty

immediate results (within four days the fatigue started decreasing, mouth sores cleared up,

aches and pains diminished, depression started lifting, my mood definitely improved), then

over the next six months, symptoms that I thought would be with me for life (gastric-reflux,

ovarian cyst bleeding, various pains, pins-and-needle sensations) started decreasing and

eventually going away. As time when on, I began feeling like an entirely different person.

For the first time in my life, I found out what it feels like to be healthy. It was at that time

that I truly realized just how interconnected these diseases can be, and how what now seems

like a somewhat simple change in eating habits has drastically changed how these diseases

effect (or I should say no longer effect) me.

You can do this. You have the opportunity to take back control of your life and to be able

to feel healthy. Start with small steps. Start with a basic diet, and spend time here reading.

You'll find information on which product manufacturers will always label if there is gluten in

their product, what restaurants may or may not be gluten safe, where local support groups

are, different diets and how they are working for different members of this forum, recipes,

things to do and glimpses into how others are learning to live gluten free. There is a wealth

of information in this forum, and it's here for you when you are ready and when

you need it.

Best of luck, and best of health to you!

Pat

Again I can't say enough how much I am thanking you for answering me and for find this forum. I think one ot the biggest things is I didn't want to accept this as the only symptom I thought I had was my stomach hurt. Then the thyroid stuff started and those symptoms were so overwhelming for months that I could barely function. I am still not functioning like I should. I am still going to therapy and taking an anxiety medicine and supplement for depression. I do assisted living and my husband dear sweet man who never cooked is cooking a lot for them. They get a lot of soups and sandwiches. I have found a few meals that I can cook that involve my stuff. I have so many quesitons about how to tell if a food is bothering you or not. I have been taking protonix and it keep the pain away but I can't tell if something is bothering me or not so should I stop taking the protonix and then if it hurts my stomach does that mean that I can't eat it. Almost everything hurts my stomach. I just ate good potatoe chips and they are bothering my stomach a little. I know I will be asking a lot but I am very dumb about this. I have been reading a few things very carefully, one of which is The Maker's Diet. I don't know if I like that one or not. It is written based on the eating in the Bible and a friend of my daughters is a nutricianist and she said she would help me after I read it. I am reading it but I like what you all have written and I think the simpliar I keep it the better I am. I am going to print all this and go over it and try it. I do have more questions but will ask later. A thousand thanks to you both for answering me. I am soooo o grateful as I have been just crying and sleeping this morning because I just couldn't handle this. Thank you and God Bless Linda

[hathor]

Since you can't have rice, have you explored other gluten-free grains? Here's a list: quinoa, millet, wild rice (not related to regular rice -- isn't even technically a grain), buckwheat, corn, sorghum, amaranth, teff. But then I'm confused. You said you were going to eat everything 3 and below and rice is a 3. So do you need to cut out rice?

A good multiple food allergy cookbook might help. I have "Food Allergy Survival Guide." (Everything in it is vegan, so for meat recipes you would need to go elsewhere).

It is easier to focus on what you can eat rather than what you can't, I've found. Also, give yourself some slack. It is normal to mourn what you can't eat anymore. But you get over it and begin to enjoy your better health. You also get new cookbooks (and more thoroughly explore the ones you have), find caches of recipes on the internet you want to try out, and cooking what you can eat becomes second nature. You even learn how to sub in what you can eat for what you can't. For instance, there are substitutes for eggs you can use in baking, like ground flax seed or EnerG egg replacer.

[applecore]

Since you can't have rice, have you explored other gluten-free grains? Here's a list: quinoa, millet, wild rice (not related to regular rice -- isn't even technically a grain), buckwheat, corn, sorghum, amaranth, teff. But then I'm confused. You said you were going to eat everything 3 and below and rice is a 3. So do you need to cut out rice?

A good multiple food allergy cookbook might help. I have "Food Allergy Survival Guide." (Everything in it is vegan, so for meat recipes you would need to go elsewhere).

It is easier to focus on what you can eat rather than what you can't, I've found. Also, give yourself some slack. It is normal to mourn what you can't eat anymore. But you get over it and begin to enjoy your better health. You also get new cookbooks (and more thoroughly explore the ones you have), find caches of recipes on the internet you want to try out, and cooking what you can eat becomes second nature. You even learn how to sub in what you can eat for what you can't. For instance, there are substitutes for eggs you can use in baking, like ground flax seed or EnerG egg replacer.

I am confused myself as to exactly where on the list of things I can eat. I know that I shouldn't eat the 4's and 5's but the 3's and below maybe. Rice is one of them Without eating rice it makes it really hard doesn't it. I haven't really explored anything. I did buy some substitute egg replacer and made bread out of it which is delicious. I made it from a Wheat Free Bread Mix that makes bagels, pizza and pie crusts. Pamela's products that I bought in a health food store that just opened near me. It does have sweet rice flour, brown rice flour and a yeast packet (active dry yeast) If I follow the list yeast (baker's yeast) is a 4 and I shouldn't eat it. Is active dry yeast and baker's yeast the same. This bread is delicious. I guess what I am asking is what do I have to give up and what can I eat and how can I tell if it bothers me or not. What are the symptoms. I am overwhelmed. Thank you and forgive me for being so down sounding. This doesn't seem to be a day that I am doing very well. Linda

[hathor]

Yeah, active dry yeast and baker's yeast (and brewer's yeast for that matter) are the same genus & species. There are yeast-free breads and bread recipes out there.

It is difficult for me to give advice on this, because I'm not at all sure that I react to yeast, even though I had a positive score. My score was right above Enterolab's cutoff and I don't know what their margin of error may be (I asked, but they didn't answer). I've tried being off yeast, but then added it back and I don't notice any changes. One can't even find definitive lists of what not consuming yeast really entails. OK, nothing like bread -- but what about wine? The sources disagree with one another. (So I drink wine No really, I went without for a couple weeks, then tried it again -- no reaction. But then I don't react to yeast in bread either.)

One thing I am not at all clear on is how accurate food allergy testing like you had actually is. I've heard people say that they don't react to things they supposedly should, but do react to things with low scores.

It may be tedious, but you could try not eating anything with a positive score at all. Then challenge them one at a time, eating each food several times over a couple days. Then you wait a couple days and see how you feel. If you feel fine, then you are OK with that food and you move on to the next one.

There are no set symptoms for food allergies. People can react differently to the same substance. And a person with multiple allergies can react differently to different foods. I know my reaction to egg is way different than my reaction to anything else.

Here is a link that describes some of the possible symptoms, and describes how one does an elimination diet:

Open Original Shared Link

[rumbles]

Please don't stop the Protonix without the advice and guidance from your medical doctor. Your tummy, your upper digestive tract, has been effected by the gluten, and possibly other issues;

the Protonix is used to try to control symptoms of acid reflux. If the acid reflux was caused by

gluten in your diet, it will take months for that issue to resolve itself once you are off of gluten.

(It took me about three months, and it took my husband, who is gluten intolerant almost seven

months before the acid reflux symptoms subsided.)

You need to give your body time to heal from the damage that gluten caused. Some symptoms

will go away in a few days, others can take months to heal, and a few symptoms can take up to

a couple of years to heal. Please, do this slowly. Switch to a dedicated gluten-free diet (including

using pots, pans, utensils, dishes, silverware, etc. that are dedicated only to gluten-free foods

[more on potential cross-contamination later]), keep the diet very basic at first, only adding one

new item at a time for a few days to see how you react to it, and give your body time to heal.

As for the potato chips . . . don't let this scare or worry you, - but if they are store-bought (with

the exception of a few select brands), they may very well contain gluten or have cross-

contamination if they were made on a manufacturing line that is also used for gluten-containing

products. On the other hand, if they are gluten free, your tummy may be reacting to the oil, as

your system will be a bit sensitive for awhile when going gluten free. There is also a possibility

that your system has trouble with potatoes (either allergy or digestion issues). Please, take this

slow, - if at all possible, stay away from processed foods (all processed foods) for at least a

couple of weeks to give your system time to begin the healing process. Instead of the potato

chips, try some honeydew or watermellon chunks, or some berries or . . . . Do this for you.

When your digestive system is feeling better, add new foods, one at a time, every few days;

keep the ones that sit well, and get rid of the ones that don't. Make a list. Keep a journal. Find

out what feels best to you, and then once you know that, you can build a diet and meal plan that

will help keep you healthy and feeling good.

[applecore]

Please don't stop the Protonix without the advice and guidance from your medical doctor. Your tummy, your upper digestive tract, has been effected by the gluten, and possibly other issues;

the Protonix is used to try to control symptoms of acid reflux. If the acid reflux was caused by

gluten in your diet, it will take months for that issue to resolve itself once you are off of gluten.

(It took me about three months, and it took my husband, who is gluten intolerant almost seven

months before the acid reflux symptoms subsided.)

You need to give your body time to heal from the damage that gluten caused. Some symptoms

will go away in a few days, others can take months to heal, and a few symptoms can take up to

a couple of years to heal. Please, do this slowly. Switch to a dedicated gluten-free diet (including

using pots, pans, utensils, dishes, silverware, etc. that are dedicated only to gluten-free foods

[more on potential cross-contamination later]), keep the diet very basic at first, only adding one

new item at a time for a few days to see how you react to it, and give your body time to heal.

As for the potato chips . . . don't let this scare or worry you, - but if they are store-bought (with

the exception of a few select brands), they may very well contain gluten or have cross-

contamination if they were made on a manufacturing line that is also used for gluten-containing

products. On the other hand, if they are gluten free, your tummy may be reacting to the oil, as

your system will be a bit sensitive for awhile when going gluten free. There is also a possibility

that your system has trouble with potatoes (either allergy or digestion issues). Please, take this

slow, - if at all possible, stay away from processed foods (all processed foods) for at least a

couple of weeks to give your system time to begin the healing process. Instead of the potato

chips, try some honeydew or watermellon chunks, or some berries or . . . . Do this for you.

When your digestive system is feeling better, add new foods, one at a time, every few days;

keep the ones that sit well, and get rid of the ones that don't. Make a list. Keep a journal. Find

out what feels best to you, and then once you know that, you can build a diet and meal plan that

will help keep you healthy and feeling good.

Again good advice. I don't know what you mean about how I was tested. My holistic doctor tested me by a gross stool test and about 16 vials of blood. Md.regular MD doctor did a blood test and by the results she said I had celiac. When I find the result of the blood tests I will post them and maybe someone here can tell me how bad I am. I was just talking to my husband about the protonix and said that my stomach hurts with almost everything I eat. I just stopped because I thought How will I know if something is bothering me unless it makes my stomach hurt. But then everything bothers me right now. I haven't had the strength to start working on this until a few days ago because of the thyroid. I was trying to watch the gluton and egg but that was all. I am anxious to find out if the testing they did 1 or 2 years ago when my thyroid was way out of wack is still good. Maybe things have changed. How did you know you were allergic to foods or was celiac. Linda

[applecore]

Yeah, active dry yeast and baker's yeast (and brewer's yeast for that matter) are the same genus & species. There are yeast-free breads and bread recipes out there.

It is difficult for me to give advice on this, because I'm not at all sure that I react to yeast, even though I had a positive score. My score was right above Enterolab's cutoff and I don't know what their margin of error may be (I asked, but they didn't answer). I've tried being off yeast, but then added it back and I don't notice any changes. One can't even find definitive lists of what not consuming yeast really entails. OK, nothing like bread -- but what about wine? The sources disagree with one another. (So I drink wine No really, I went without for a couple weeks, then tried it again -- no reaction. But then I don't react to yeast in bread either.)

One thing I am not at all clear on is how accurate food allergy testing like you had actually is. I've heard people say that they don't react to things they supposedly should, but do react to things with low scores.

It may be tedious, but you could try not eating anything with a positive score at all. Then challenge them one at a time, eating each food several times over a couple days. Then you wait a couple days and see how you feel. If you feel fine, then you are OK with that food and you move on to the next one.

There are no set symptoms for food allergies. People can react differently to the same substance. And a person with multiple allergies can react differently to different foods. I know my reaction to egg is way different than my reaction to anything else.

Here is a link that describes some of the possible symptoms, and describes how one does an elimination diet:

Open Original Shared Link

How did you get tested for your food allergies. I had a stool tests and 16 vials of blood. I have the results when I find them maybe I will post some of the results and you all could help decipher them . I also had recently my regular MD do a blood test that said I was gluten intolerant. I will also post that when I get it all together. Again than k you for your advice and Iam soooo glad I found this forum. linda

[ArtGirl]

Hi Linda,

You've been given lots of good advice. It may take a week or two for you to get yourself organized, but you'll get there.

How did you know you were allergic to foods or was celiac.

At first, you'll probably not know the difference. Sometimes (as it happened with me and others, too) just going gluten-free relieves many symptoms right away. Then, some of the symptoms seem to come back. It's not gluten, but other food allergies or sensitivities showing up.

It just all takes time. The best thing you can do for yourself is to eat only those foods that you had NO reaction to on your tests. Give your body and your stomach a chance to heal (yes, potato chips are really hard on the stomach). If you can, don't eat packaged or processed foods (like the Pamela mixes). Stick to the whole foods.

You should see at least a small improvement right away and a steady gain on feeling better if you can stick this limited diet out for a few weeks. Then, as others have suggested, start adding in one food at a time (still eating whole foods and no processed foods).

My journey to health has taken two years. When I first went gluten-free I became nearly symptom-free (except for stomach pain) after a week or two, but then about a month later some of the symptoms came back, especially the big "D". It took me a while to really get serious about other food sensitivities but when I eliminated corn and potatoes, the D left for good. The stomach pain was from gluten and it took about three months for that to stop bothering me.

Keep reading on this forum. Post a question on the baking forum asking for breads without rice and yeast. Quick breads don't have yeast and there are flour mixes that don't include rice.

You have come to the best place for support for your celiac and other food allergy issues.

[lizard00]

Welcome! I'm new here, but this is also the best place that I've found.

What JerseyAngel said is right, DO NOT stop taking your meds. I had the same problem... everything I ate made my stomach hurt. EVERYTHING! The DR put me on something and it is working. But only if I take it, and occasionally I still feel a little pain. Eventually, I hope to not have to take it anymore.

Eliminate the things you are POSITIVE makes it worse, and go from there. And especially things that are known to disturb people without intolerances/allergies (like fried foods, or sugary foods or caffeine). When I first did my elimination diet, I felt the same way. I had no idea what I was going to eat as my diet consisted of everything I shouldn't eat. But within a few days, it got easier. Check out the safe grains that another poster listed. Quinoa is very gentle, is very nutritious, and you can do a million things with it. And Buckwheat is pretty much the same; you can add just about anything to it and it makes a great breakfast. I snacked on fruit ALL the time, cantaloupes got me through some pretty rough days. When you bring it home, cut it up right then so it's ready when you're hungry.

The best thing you can do is read, read, read. Educate yourself on different foods; there are very reliable internet sources, including this one. The main thing to do is stay positive. It sucks to feel bad all the time ( I know all too well), but keep fighting and it WILL get better!!

And don't be shy about asking questions here! I read this forum long before I joined it and nothing is sacred. If you have a problem, ask! There are plenty of people here are or have been where you are, and you can get some great advice!

Hoping your day gets better!!!

Liz

[applecore]

Hi Linda,

You've been given lots of good advice. It may take a week or two for you to get yourself organized, but you'll get there.

At first, you'll probably not know the difference. Sometimes (as it happened with me and others, too) just going gluten-free relieves many symptoms right away. Then, some of the symptoms seem to come back. It's not gluten, but other food allergies or sensitivities showing up.

It just all takes time. The best thing you can do for yourself is to eat only those foods that you had NO reaction to on your tests. Give your body and your stomach a chance to heal (yes, potato chips are really hard on the stomach). If you can, don't eat packaged or processed foods (like the Pamela mixes). Stick to the whole foods.

You should see at least a small improvement right away and a steady gain on feeling better if you can stick this limited diet out for a few weeks. Then, as others have suggested, start adding in one food at a time (still eating whole foods and no processed foods).

My journey to health has taken two years. When I first went gluten-free I became nearly symptom-free (except for stomach pain) after a week or two, but then about a month later some of the symptoms came back, especially the big "D". It took me a while to really get serious about other food sensitivities but when I eliminated corn and potatoes, the D left for good. The stomach pain was from gluten and it took about three months for that to stop bothering me.

Keep reading on this forum. Post a question on the baking forum asking for breads without rice and yeast. Quick breads don't have yeast and there are flour mixes that don't include rice.

You have come to the best place for support for your celiac and other food allergy issues.

I really cried out to the Lord and asked him to help me and then I found you all. Every time I read one of your comments, it gets plainer what I should do. I will try to eat only the things that are not on my list. The only thing is what foods are they? Do I eat from the 01-5. I listed on one of the above emails what they say on this list. Of course all food are not on there. Do I avoid all the foods that they say from the list alltogether for a couple of weeks. I guess I could do that . I think the only thing that I didn't test allergic to was tuna fish. There is not much that you would eat at least I can't think of much. If I stick to under the 3's not eating anything 3 and above, I can eat apple, beef, cabbage, carrot, chicken, coconut, coffee, corn, garlic, lettuce, mushroom, orange,pea, pork, potato, shrimp, soybean (which I don't think is to good for thyroid), strawberry, sunflower, tea, tuna a-Lactalbumin (what is that). That is all or should I avoid all those things on the list period and try to find other foods that are not on this list. I think I am getting a handle on at least not being paranoid about this whole thing. I have cried all day and slept. This is very unusal for me. I am so relieved that my thyroid is now under control and some of these other things can be addressed. Do you mean by the big "D" depression. I am so glad that there is maybe light at the end of the tunnel. You guys are so great and I am getting choices to try. I think I can do this. linda

[lizard00]

a-Lactalbumin is a milk protein

[applecore]

Welcome! I'm new here, but this is also the best place that I've found.

What JerseyAngel said is right, DO NOT stop taking your meds. I had the same problem... everything I ate made my stomach hurt. EVERYTHING! The DR put me on something and it is working. But only if I take it, and occasionally I still feel a little pain. Eventually, I hope to not have to take it anymore.

Eliminate the things you are POSITIVE makes it worse, and go from there. And especially things that are known to disturb people without intolerances/allergies (like fried foods, or sugary foods or caffeine). When I first did my elimination diet, I felt the same way. I had no idea what I was going to eat as my diet consisted of everything I shouldn't eat. But within a few days, it got easier. Check out the safe grains that another poster listed. Quinoa is very gentle, is very nutritious, and you can do a million things with it. And Buckwheat is pretty much the same; you can add just about anything to it and it makes a great breakfast. I snacked on fruit ALL the time, cantaloupes got me through some pretty rough days. When you bring it home, cut it up right then so it's ready when you're hungry.

The best thing you can do is read, read, read. Educate yourself on different foods; there are very reliable internet sources, including this one. The main thing to do is stay positive. It sucks to feel bad all the time ( I know all too well), but keep fighting and it WILL get better!!

And don't be shy about asking questions here! I read this forum long before I joined it and nothing is sacred. If you have a problem, ask! There are plenty of people here are or have been where you are, and you can get some great advice!

Thanks for your input. That is what happens to me my stomach hurt so bad I couldn't stand it. It hurt on the way down and when it got there. Ididn't have and bowel problems or weight problems just pain. My doctor gave me protonix and it basically stops the pain That is why I wasn't sure how to tell if something was still reacting. I lived on watermelon and grapes. I think I was really dehydrated. I ate at least one watermelon a week and a big thing of grapes. I have heard about the Quinoa and I believe the Sun Paper in Balto. had a full page on it. My husband read it to me. I am going to give a really big try to eating only what I is not on my list and see what happens. I surely can find something. Now beef and chicken and pork are all on my list. chicken is the lowest and shrimp and tuna. For a week I can do something. I will see how it makes me feel. I am so excited that I found you all and I don't know what else to say except this is heaven for me and thank you thank you thank you. linda

Hoping your day gets better!!!

Liz

[ArtGirl]

Do you mean by the big "D" depression.

No.... D is shorthand for diahrea. (Sorry... I find it hard to spell so use the shorthand--had to go look it up to type here).

But, depression and anxiety can be caused from gluten. I know my mild depression lifted and I began to feel happy after about 6 months gluten-free. It was a quite a pleasant surprise.

Re: your food allergy test.

Didn't you get some kind of printed explanation with the test results. I'm sure one of those numbers (the "0" ?) means you had no reaction. I'd first start with those foods you were tested for and had no reaction. You could add in other foods that were not on the test after that before introducing any foods you were reactive to.

If you can eat all those things you listed, that's quite a variety right there.

[applecore]

No.... D is shorthand for diahrea. (Sorry... I find it hard to spell so use the shorthand--had to go look it up to type here).

But, depression and anxiety can be caused from gluten. I know my mild depression lifted and I began to feel happy after about 6 months gluten-free. It was a quite a pleasant surprise.

Re: your food allergy test.

Didn't you get some kind of printed explanation with the test results. I'm sure one of those numbers (the "0" ?) means you had no reaction. I'd first start with those foods you were tested for and had no reaction. You could add in other foods that were not on the test after that before introducing any foods you were reactive to.

If you can eat all those things you listed, that's quite a variety right there.

The foods I listed are the foods that I tested in some form allergic to. I am going to look again at my tests but the only thing that had a 0 was tuna fish, which I like but not without real mayonaise. I am trying the other mayonaises and I have found one that I like somewhat. It is a matter of getting used to other tastes I guess. One thing do you eat things with sugar in them. My doctor said to stay away from sugar it wasn't good for me, well I know that but I like sweet things. I do like stevia and have a stevia cookbook but it uses mostly regular ingredients. I haven't really looked at it yet. Today is the day I am starting to eat nothing that is on my list of allergies except for the chicken which was a 0l and I do need to eat some meat. I am not a vegetarian. Without being able to eat lettuce and tomato and beef that limits me but I am going to do this for a week or two and then do what you all have been telling me to try one thing back at a time and wait a couple days and see how I react. I am so thrilled to find you all. Thanks and God Bless linda The most trouble I had was trying to find this same place where my questions were. Is there something that you click on to find this. It took me a while to find it. thanks

[hathor]

How did you get tested for your food allergies.

I was tested by Enterolab for gluten, casein, egg, soy & dietary yeast.

[Nancym]

Applecore, would it help you to follow a plan of sorts? I follow the Paleo Diet, which is pretty flexible in many ways. Basically it tries to return one's eating to how we ate for 100's of thousands of years, before the recent introduction of grains and dairy products. You'll find lots of meal plans and recipes. I've modified it for myself to include other foods I'm ok (tested by exclusion and reintroduction) but stick to the basic tenents of no dairy, no grains.

Anyway, a couple of web sites to get you going: Open Original Shared Link and Open Original Shared Link might get you going.

I have completely turned around some nasty health issues since following this diet and I can't recommend it enough.

Best of luck!

[ArtGirl]

One thing do you eat things with sugar in them. My doctor said to stay away from sugar it wasn't good for me, well I know that but I like sweet things.

Welllll, I've never completely eliminated sugars, but have reduced the sweet things in my food plan. I cannot handle lots of carbs and feel much better with no starches except from vegetables and some fruit. Whenever I have high-carb/high-sugar foods, it makes me crave more. A vicious cycle for me.

So many of the gluten-food substitues are the starches - breads, cookies, etc. - and that's what most newly diagnosed go for. They are high in fats (lots of eggs) and sugars. Not all that good nutritionally, but they do help get one over having to give up favorite goodies.

I think, though, since you are having so many problems, it would definitely be good to limit starches and sugars. Again - go for the whole foods.

I do use stevia - but not in baking; although others do. I use it to sweeten strong-flavored drinks such as lemon or lime drinks. My substitute for sodas is carbonated mineral water with lemon/lime juice sweetened with stevia. I also buy unsweetened cranberry juice and sweeten it with stevia. (Stevia has a flavor of its own, but I don't notice it when what I'm sweetening also has a strong flavor.)

Good luck on your new dietary adventure. Hope you see improvement quickly.

[tarnalberry]

The foods I listed are the foods that I tested in some form allergic to. I am going to look again at my tests but the only thing that had a 0 was tuna fish, which I like but not without real mayonaise. I am trying the other mayonaises and I have found one that I like somewhat. It is a matter of getting used to other tastes I guess. One thing do you eat things with sugar in them. My doctor said to stay away from sugar it wasn't good for me, well I know that but I like sweet things.

Yep - it's a matter of getting used to, and eventually liking, other tastes. If you refuse to try other things, you'll just find yourself frustrated and limited. Sometimes, even for a little while, we have to remind ourselves that food is there to sustain us. Yes, that might mean that we can't take the enjoyment and pleasure out of food that we used to (for some length of time, anyway), but we'll be fueled well enough to take enjoyment and pleasure out of other things in life, rather than having *nothing* we have the energy to enjoy. Eventually, we learn to adapt and take pleasure out of food again as well, if we're willing. (And there's always cycles... it's not easy to adapt in this world of wheat and all those other foods that you are trying to get rid of! But you'll get there.)

By the way, for tuna, I mix it with avocado and lemon juice (and sometimes salsa).