I Truly Wonder If All The Worry About Food Is Worth It?

[peacebwu]

IT'S BEEN ONE OF THOSE DAYS. I AM SO TIRED OF WORRYING ABOUT FOOD, AND WHAT'S IN THIS AND THAT. TODAY I JUST DON'T GIVE A CARE! MY BLOOD TEST SHOWED I'M ALLERGIC TO WHEAT, RYE, YEAST, DAIRY, SOY, EGG WHITES, ON AND ON.

DOES THIS MEAN I'M CELIAC????? HIGH IGG OF 348 DOES THAT TELL YOU THAT YOU ARE?????

AFTER GETTING THE RESULTS FROM MY DR. (ALLERGY DR.) MY BOOKLET SHOWS THAT I'M NOT ALLERGIC TO CORN (ANY), OATS,PLUS APPLES..YET, WHEN I EAT THESE ITEMS, I GET THE SAME PAINS, ETC. THAT I GET FROM THE WHEAT! I'M SUPPOSE TO BE ABLE TO EAT CHICKEN (YEA!), I MAKE CHICKEN BUILLION CUBE/W. WHITE RICE.....SOMETIMES THIS AGREES, AND SOMETIMES IT DOESN'T.

I WONDER IF YOUR INTESTINES EVER HEAL? THIS HAS BEEN GOING ON (AND OFF) FOR YEARS (AT LEAST 10 THAT I CAN REALLY PIN DOWN).

I BOUGHT GLUTTEN FREE (ARROWOOD COOKIES), FIRST COUPLE OF DAYS OKAY, THEN LAST NIGHT ...HERE WE GO AGAIN!

INTERNAL TEST TAKEN A FEW YEARS BACK (REALLY SICK) NO INDICATION OF CELIAC!

SHOULD I JUST DECIDE FOR MYSELF THAT I AM....AND TRY TO AVOID AS MUCH AS I CAN (WHICH IS ALMOST IMPOSSIBLE). WHEN I READ HOW PEOPLE STATE THEY ARE GLUTTEN FREE, I GATHER THEY DON'T HAVE THE OTHER ALLERGY'S TO FOOD THAT I HAVE.

ANY SUGGESTIONS WOULD SURELY BE APPRECIATED.......MY FOOD LIST IS GETTING SMALLER, AND SMALLER...IT'S ALMOST THAT I'M AFRAID TO EAT!

I HAVE READ ON SOME BLOGS THAT PEOPLE HAVE DIAGNOSED THEMSELVES AS CELIAC.....HOW DO YOU DO THAT???? DO YOU BUY A KIT OR WHAT?????

SORRY FOR THE WHINING, BUT AM I THE ODD ONE OUT OF THE BUNCH? DO YOU EVER REALLY GET HEALED.......OR DO YOU JUST PLAIN PUT UP WITH IT? IT SEEMS LIKE WERE LIVING ON THE EDGE, AND ONE SLIP AND YOUR IN A VERY SERIOUS SITUATION!

D

[bagelbabe]

IT'S BEEN ONE OF THOSE DAYS. I AM SO TIRED OF WORRYING ABOUT FOOD, AND WHAT'S IN THIS AND THAT. TODAY I JUST DON'T GIVE A CARE! MY BLOOD TEST SHOWED I'M ALLERGIC TO WHEAT, RYE, YEAST, DAIRY, SOY, EGG WHITES, ON AND ON.

DOES THIS MEAN I'M CELIAC????? HIGH IGG OF 348 DOES THAT TELL YOU THAT YOU ARE?????

AFTER GETTING THE RESULTS FROM MY DR. (ALLERGY DR.) MY BOOKLET SHOWS THAT I'M NOT ALLERGIC TO CORN (ANY), OATS,PLUS APPLES..YET, WHEN I EAT THESE ITEMS, I GET THE SAME PAINS, ETC. THAT I GET FROM THE WHEAT! I'M SUPPOSE TO BE ABLE TO EAT CHICKEN (YEA!), I MAKE CHICKEN BUILLION CUBE/W. WHITE RICE.....SOMETIMES THIS AGREES, AND SOMETIMES IT DOESN'T.

I WONDER IF YOUR INTESTINES EVER HEAL? THIS HAS BEEN GOING ON (AND OFF) FOR YEARS (AT LEAST 10 THAT I CAN REALLY PIN DOWN).

I BOUGHT GLUTTEN FREE (ARROWOOD COOKIES), FIRST COUPLE OF DAYS OKAY, THEN LAST NIGHT ...HERE WE GO AGAIN!

INTERNAL TEST TAKEN A FEW YEARS BACK (REALLY SICK) NO INDICATION OF CELIAC!

SHOULD I JUST DECIDE FOR MYSELF THAT I AM....AND TRY TO AVOID AS MUCH AS I CAN (WHICH IS ALMOST IMPOSSIBLE). WHEN I READ HOW PEOPLE STATE THEY ARE GLUTTEN FREE, I GATHER THEY DON'T HAVE THE OTHER ALLERGY'S TO FOOD THAT I HAVE.

ANY SUGGESTIONS WOULD SURELY BE APPRECIATED.......MY FOOD LIST IS GETTING SMALLER, AND SMALLER...IT'S ALMOST THAT I'M AFRAID TO EAT!

I HAVE READ ON SOME BLOGS THAT PEOPLE HAVE DIAGNOSED THEMSELVES AS CELIAC.....HOW DO YOU DO THAT???? DO YOU BUY A KIT OR WHAT?????

SORRY FOR THE WHINING, BUT AM I THE ODD ONE OUT OF THE BUNCH? DO YOU EVER REALLY GET HEALED.......OR DO YOU JUST PLAIN PUT UP WITH IT? IT SEEMS LIKE WERE LIVING ON THE EDGE, AND ONE SLIP AND YOUR IN A VERY SERIOUS SITUATION!

D

[bagelbabe]

I Know, it gets really tiresome, Gluten free alone is overwhelming, but add dairy , corn etc...

I suspect, that I have some other things dominoing from the celiac. One thing I am going to look into is some digestive enzymes? I would think that would help, But who knows what is in that? I feel your pain! I would rather not have to think about food anymore, it is no longer a fun thing to do, like eating out, or cooking out! Always worried, on top of that, My husband said that he thought I really had an eating disorder and that I was hiding behind celiac! because I am so thin, so I had to at his request make a dr apt for him to go along with me so he could talk to the dr. and he is still not satisfied! We have a gluten-free household, since I am the one that cleans and is here all day feeding the kids, I give them the freedom and they have the freedom to eat whatever gluten items when My husband is at work for 2 meals of the day, and goes out for lunch, they go to family members and eat there etc.... I can't do any of that so I need one just ONE safe place! and I still get my Husband pushing things carrying around gluten food items in his car! SO know the kids always want to be with him in his candy car! But back to you- It sucks! definetly, I am afraid of everything unknown. and personally Im so tired, I can't even spend another minute looking at ingredients for makeup and shampoo, and definetley tired of the person I married always thinking I am full of sh**t, Oh Like I would want to have this difficult life long restricted lifestyle,

SO that is going to have to change! I at least hope you have some REAL support at home!

[bagelbabe]

I Know, it gets really tiresome, Gluten free alone is overwhelming, but add dairy , corn etc...

I suspect, that I have some other things dominoing from the celiac. One thing I am going to look into is some digestive enzymes? I would think that would help, But who knows what is in that? I feel your pain! I would rather not have to think about food anymore, it is no longer a fun thing to do, like eating out, or cooking out! Always worried, on top of that, My husband said that he thought I really had an eating disorder and that I was hiding behind celiac! because I am so thin, so I had to at his request make a dr apt for him to go along with me so he could talk to the dr. and he is still not satisfied! We have a gluten-free household, since I am the one that cleans and is here all day feeding the kids, I give them the freedom and they have the freedom to eat whatever gluten items when My husband is at work for 2 meals of the day, and goes out for lunch, they go to family members and eat there etc.... I can't do any of that so I need one just ONE safe place! and I still get my Husband pushing things carrying around gluten food items in his car! SO know the kids always want to be with him in his candy car! But back to you- It sucks! definetly, I am afraid of everything unknown. and personally Im so tired, I can't even spend another minute looking at ingredients for makeup and shampoo, and definetley tired of the person I married always thinking I am full of sh**t, Oh Like I would want to have this difficult life long restricted lifestyle,

SO that is going to have to change! I at least hope you have some REAL support at home!

I would say, as my dr has said, with non specific test results indicating celiac disease, that If you feel better and see improvement with a gluten free diet, stick with it, other wise your looking at 6 months of a regular gluten filled diet do be able to really diagnose it with a biopsy and ati - body tests. which I am not going to go through , I know that I should not have the slightes bit of gluten in or on or near my body, and thats it!

[ravenwoodglass]

First off celiac is not an allergy and won't show up on an allergy panel. It is an intolerance and an autoimmune disorder. While you are still eating gluten foods you need to get a celiac panel done, your regular doctor can order one.

As to the allergy issues. Celiac can cause the immune system to go into hyperdrive and make you show up as 'allergic' to just about everything. The allergy tests, skin prick, that my allergist did showed a reaction to 98 out of the 99 things he tested me for, that was when he suspected I was celiac. He then put me on an elimination diet with a starting point that he determined. The 5 starting foods I had put a quick resolution to my GI issues and once I had stopped having the daily and nightly D (even on really strong meds) I started adding back in foods. When I added back in wheat 3 days later all those symptoms were back. He then referred me to a GI doctor who confirmed the celiac. Within a very short time all but 3 of the original 98 substances that I reacted to were gone.

In response to the rice with bullion cubes, most of them contain either gluten or soy. Some folks with celiac are also intolerant to soy and need to use a broth that is for sure gluten free and soy free.

[TrillumHunter]

So, you ate chicken bullion cubes and arrowroot cookies? Well, I'd tell you both those things are pretty crappy foods. Could you dedicate yourself to eating whole foods for a while? No msg, so chemical soup, no complex thickeners and binders, just food. The rule would be that it needs to look exactly like it did when it came off the plant, tree or out of the ground. I mean, diet Coke and Jolly Ranchers wouldn't contain any of your problem items but are they food?

Chicken broth is chicken, salt, water. Look at your jar of bullion cubes and see what's in them. The DIET isn't the problem, it's what passes for food these days.

I hear that you feel bad. I'm not picking at you. But please consider cleaning up your diet of all those modern additives before you blame all foods.

Best wishes for your good health!

[peacebwu]

So, you ate chicken bullion cubes and arrowroot cookies? Well, I'd tell you both those things are pretty crappy foods. Could you dedicate yourself to eating whole foods for a while? No msg, so chemical soup, no complex thickeners and binders, just food. The rule would be that it needs to look exactly like it did when it came off the plant, tree or out of the ground. I mean, diet Coke and Jolly Ranchers wouldn't contain any of your problem items but are they food?

Chicken broth is chicken, salt, water. Look at your jar of bullion cubes and see what's in them. The DIET isn't the problem, it's what passes for food these days.

I hear that you feel bad. I'm not picking at you. But please consider cleaning up your diet of all those modern additives before you blame all foods.

Best wishes for your good health!

[peacebwu]

Thanks to all who gave me advice! Since I went a year or so ago to a GI doctor and had an intestine check/colonscopy, scans, etc. etc.....no one mentioned Celiac this is why I am doubtful of their opinions (these were different drs.). This is when I went to the Allergy Dr. for food allergeries and as ravenwoodglass stated also was determined that allergic to many, many foods.

I guess I'm at a point of who do you believe?????

TrillumHunter - thanks really.....but when your supposedly allergic to so many foods, what do you eat? I'm on Almond unsweentened milk, rice krispies, pototoes, green beans, fresh carrots, melon, banana (even though showed up allergic). I can tolerate coffee (one cup) turkey, beef......that's about it........

It seems I've gotten myself to a point where I hesitate to try anything else! If whatever it is doesn't agree, I'm sick for at least 3 days.......

I thought I had good doctors, but after they find out about the allergeries....that's there cure all....stop eating them......

Thanks to all.....today's another day.....what is....is! d

[mimommy]

IT'S BEEN ONE OF THOSE DAYS. I AM SO TIRED OF WORRYING ABOUT FOOD, AND WHAT'S IN THIS AND THAT. TODAY I JUST DON'T GIVE A CARE! MY BLOOD TEST SHOWED I'M ALLERGIC TO WHEAT, RYE, YEAST, DAIRY, SOY, EGG WHITES, ON AND ON.

DOES THIS MEAN I'M CELIAC????? HIGH IGG OF 348 DOES THAT TELL YOU THAT YOU ARE?????

AFTER GETTING THE RESULTS FROM MY DR. (ALLERGY DR.) MY BOOKLET SHOWS THAT I'M NOT ALLERGIC TO CORN (ANY), OATS,PLUS APPLES..YET, WHEN I EAT THESE ITEMS, I GET THE SAME PAINS, ETC. THAT I GET FROM THE WHEAT! I'M SUPPOSE TO BE ABLE TO EAT CHICKEN (YEA!), I MAKE CHICKEN BUILLION CUBE/W. WHITE RICE.....SOMETIMES THIS AGREES, AND SOMETIMES IT DOESN'T.

I WONDER IF YOUR INTESTINES EVER HEAL? THIS HAS BEEN GOING ON (AND OFF) FOR YEARS (AT LEAST 10 THAT I CAN REALLY PIN DOWN).

I BOUGHT GLUTTEN FREE (ARROWOOD COOKIES), FIRST COUPLE OF DAYS OKAY, THEN LAST NIGHT ...HERE WE GO AGAIN!

INTERNAL TEST TAKEN A FEW YEARS BACK (REALLY SICK) NO INDICATION OF CELIAC!

SHOULD I JUST DECIDE FOR MYSELF THAT I AM....AND TRY TO AVOID AS MUCH AS I CAN (WHICH IS ALMOST IMPOSSIBLE). WHEN I READ HOW PEOPLE STATE THEY ARE GLUTTEN FREE, I GATHER THEY DON'T HAVE THE OTHER ALLERGY'S TO FOOD THAT I HAVE.

ANY SUGGESTIONS WOULD SURELY BE APPRECIATED.......MY FOOD LIST IS GETTING SMALLER, AND SMALLER...IT'S ALMOST THAT I'M AFRAID TO EAT!

I HAVE READ ON SOME BLOGS THAT PEOPLE HAVE DIAGNOSED THEMSELVES AS CELIAC.....HOW DO YOU DO THAT???? DO YOU BUY A KIT OR WHAT?????

SORRY FOR THE WHINING, BUT AM I THE ODD ONE OUT OF THE BUNCH? DO YOU EVER REALLY GET HEALED.......OR DO YOU JUST PLAIN PUT UP WITH IT? IT SEEMS LIKE WERE LIVING ON THE EDGE, AND ONE SLIP AND YOUR IN A VERY SERIOUS SITUATION!

D

Hello, and welcome to the board It sounds like you are feeling pretty overwhelmed, both by your symptoms and by the gluten free diet. When you are not feeling up to par the only thing that matters is getting well, and so many people here can completely relate to what you are going through. And yes, the initial change over to a gluten free lifestyle can be very challenging. There is so much to learn, and unfortunately when you make a mistake it is your health (or your family's) at stake.

Take a deep breath, and slow down.

If you really suspect that you have Celiac Disease, it is important to have full celiac panel (blood tests) performed by your doctor. Your MD, Internist, or general practitioner can order these tests. Typically the tests include an IgA and tTg (tissue transglutaminase), which are very specific for celiac testing. If these numbers are high you will likely be told that you need a small bowel biopsy to confirm celiac. However--you must be consuming gluten daily for these tests to be accurate.

When a person says that they are self diagnosed I think they mean their tests were negative, or borderline, but they started the gluten-free diet anyway and had a positive dietary response. Most go back to be tested later. This requires a gluten challenge--going back on a gluten filled diet for a lengthy period of time in order to start producing antibodies again. If you had experienced healing and relief and better health, the lAST thing you'd want to do is to go back on gluten.

Although testing is getting better and doctors are more aware of it, until very recently it could take up to 10 years to be diagnosed. A lot of internal damage to your intestines can occur over ten years, not to mention your joints, etc. The home page of this forum (celiac.com) has a ton of great information about the disease, testing, the diet, etc. Please read and inform yourself before making a choice.

I can tell you from my families experience that even almost a year into it it is a mixed blessing at times. The diet was an almost overnight miracle cure for our daughter--the relief was that immediate. Many folks here report that it takes months, even years, to completely heal and no longer react to other common food sensitivities, such as dairy and soy. It depends upon the sensitivity level and amount of damage for the individual. But the expense of having a completely gluten free household is very difficult to handle at times. There are financial, social, and emotional issues that we deal with just about every day--especially because my child is still in grade school.

I think you are nearing some insights here, so try not to be discouraged. Whatever is making you so ill took a long time to reach this point, so at least give yourself the time to find the answers needed and heal your body. You are ALWAYS welcome to post here, ask questions, unload your fears and troubles--because we've all BEEN THERE

[tarnalberry]

when you have so many allergies, you eat what you can, even when that's five foods. you stay strictly gluten free, if you're trying that route, to see if shutting down that faulty immune system reaction will help reduce your allergies. and you explore new foods.

are you allergic to meats? if not, why isn't chicken, beef, pork, or turkey on your list?

are you allergic to all grains? if not, why isn't white/brown/wild rice, corn, quinoa, buckwheat, amaranth, or millet on your list?

are you allergic to more veggies? if not why isn't sweet pepers, spinach, sweet potatoes, sugar snap peas, onions, cauliflower, leaf lettuce, beets, or kale on your list?

are you allergic to more fruits? if not, why aren't apples, oranges, grapes, cherries, peaches, or pears on your list?

are you allergic to all nuts? if not, why isn't almonds, walnuts, pecans, coconut or cashews on your list?

are you allergic to each and every one of those 32 items I just listed? even if you're not allergic to 3 of them, that's three more things to add to your list. and you keep exploring, finding new foods, that you can tolerate, to add to that list. basically, make sure that you aren't self-limiting by sticking to "well-known, mainstream" choices. because then it's not your allergies restricting you, it's yourself.

[TrillumHunter]

Unless your specifically buying gluten free ones, rice krispies contain gluten in the form of malt from barley. They're are also pretty empty nutritionally speaking.

I would encourage you to consider what tarnalberry has said. You CAN branch out from your short list. And please consider giving up commercially processed foods for a while.

A good guide like is 5 ingredients or less on the label.