Need To Vent

[WalksonWater]

Okay so let me start by saying that I'm grateful that my husband doesn't have Leukemea or bone marrow cancer or cancer or something like what we were told it could have been. So my husband has had to have a blood transfusion and many tests before they finally say that the blood test is positive for Celiacs. Now it appears his low, low, low hemoglobin is due to malnutrition...Celiacs...it's not confirmed by biopsy that will take place in 2 weeks. We helped our selves and placed him on a gluten free diet for the past 3 weeks (no Dr.'s assistance...no dietary advice..nothing). Anyway so I've thought he's been on a gluten free diet and now I read about cross contamination in plants....can he NOT have a potato chip? Do we have to shop online and pay horrible prices +++ shipping? This sux...excuse me.....I really am grateful. So we are going shopping at WalMart tomorrow. I guess we'll buy steak, chicken and potatos....what about snacks? He's been eating Snyders Corn Tortillas (chips) are these CONTAMINATED TOO? I have 2 boys (my 4 year old has some symptoms but I'm not going there right now).....this is so WELL I just simply don't have TIME for this...after all I sit around all day long looking for somthing else to do (yea, right!)...~~~##+#+~~~Okay, I'm feeling better, thanks for letting me vent.

[Jestgar]

I'm pretty sensitive and I eat all kinds of things that are "made in a facility that also processes wheat".

Some people have had issues, but they seem to be related to specific companies.

Hopefully once your husband begins to feel better he'll be able to help more with the shopping. Also, once you've found some brands that you like and trust, you'll be much less stressed about shopping.

Yes it's not fair that you have to deal with the brunt of planning, but I hope that you find understanding people on this forum. At any rate, you can always vent here.

[CarlaB]

Feel free to vent. Some people are careful about wheat-free facilities, others are not. Lots of times its a matter of whether the facility has contamination issues. I'm sure people will have good advice along these lines.

You husband's doc probably didn't insist on the diet because if you go on the diet prior to the biopsy it can cause a false negative! He really should have been eating gluten all this time. Is he feeling better gluten-free? If so, you can just take the blood test results and the dietary response for diagnosis if the biopsy is negative, which it could be after 5 weeks gluten-free.

[Michi8]

Okay so let me start by saying that I'm grateful that my husband doesn't have Leukemea or bone marrow cancer or cancer or something like what we were told it could have been. So my husband has had to have a blood transfusion and many tests before they finally say that the blood test is positive for Celiacs. Now it appears his low, low, low hemoglobin is due to malnutrition...Celiacs...it's not confirmed by biopsy that will take place in 2 weeks. We helped our selves and placed him on a gluten free diet for the past 3 weeks (no Dr.'s assistance...no dietary advice..nothing). Anyway so I've thought he's been on a gluten free diet and now I read about cross contamination in plants....can he NOT have a potato chip? Do we have to shop online and pay horrible prices +++ shipping? This sux...excuse me.....I really am grateful. So we are going shopping at WalMart tomorrow. I guess we'll buy steak, chicken and potatos....what about snacks? He's been eating Snyders Corn Tortillas (chips) are these CONTAMINATED TOO? I have 2 boys (my 4 year old has some symptoms but I'm not going there right now).....this is so WELL I just simply don't have TIME for this...after all I sit around all day long looking for somthing else to do (yea, right!)...~~~##+#+~~~Okay, I'm feeling better, thanks for letting me vent.

Vent away!

If your husband is having his biopsy done in two weeks, then he may want to wait until that test is over before going gluten free (going gluten free can have an impact on the results of biopsy.) Until that time, do some planning about meals. Find out what is and isn't safe to eat...find out what snacks are gluten free. There are brands of potato chips that are fine on a gluten free diet...and plenty of other snack foods too. Check out some of the gluten free cookbooks at your library as well. You don't need to spend too much money if you plan well.

Michelle

[kbtoyssni]

Most potato chips are fine. I don't usually call the companies on this one. I just read the ingredients and go by that. I know Tostitos brand corn chips are gluten-free as well as most other brands. Not sure on Snyders.

The diet can be expensive if you buy a lot of the gluten-free substitutes - bread, cookies, pizza, etc. But there are ways to get around eating these products. Instead of sandwiches for lunch, I often eat baked potatoes or rice with cheese and salsa. Or I use corn tortillas as "bread". The tortillas I buy are maybe $1.50 for a package of 36.

In the beginning you're probably going to try to take exactly what you ate before and buy substitutes. But if you want to save money, it's going to take a little bit of thinking outside the box.

For snacks I like fun-sized bags of M&Ms, string cheese, apple sauce, apples, bananas, pickles.

Baking things on your own can also make it cheaper. Although it sounds like you're pretty busy so it might be hard for you to find a lot of time to bake. How old is your other son? If he's older maybe he can help you make meals. It might be a fun mother-son activity?

You sound like you're doing a great job of trying to figure out the diet. But it's going to take time. Hang in there, and trust me, it will all be worth it in a few months when you're a pro at the diet and your husband's health is back.

[tarnalberry]

Now it appears his low, low, low hemoglobin is due to malnutrition...Celiacs...it's not confirmed by biopsy that will take place in 2 weeks. We helped our selves and placed him on a gluten free diet for the past 3 weeks (no Dr.'s assistance...no dietary advice..nothing).

He needs to not be gluten free. He must be consuming gluten - at normal amounts - right up until all diagnostics tests that will be performed, are performed. The fact that he's been gluten free for three weeks may skew the results of the biopsy. Given that he's been this sick for this long, there's still a chance that the results will be accurate, because the damage to his intestines will be so severe that they will be months or years in the healing. But he should not be gluten free until the tests have all been run.

Anyway so I've thought he's been on a gluten free diet and now I read about cross contamination in plants....can he NOT have a potato chip? Do we have to shop online and pay horrible prices +++ shipping?

Just like anyone with an anaphylactic allergy, or anyone trying to avoid salmonella, you have to be aware of contamination concerns. But remember, there are rules about cleanliness in food production, and that includes cleaning production lines and keeping facilities clean. It's part of the learning process of getting the hang of the diet to learn what companies we can generally trust and which ones we can't. Yes, he can have a potato chip - he can have lots of them, and plenty of varieties, if he really wants. He just has to find out what brands have low contamination concerns. The same applies to all the other packaged, pre-processed foods you choose to buy - he's got to do his homework to read the labels (ALWAYS read the label - NEVER assume), call the companies on questionable ingredients, and find out what companies are problematic when it comes to contamination. You don't have to buy online if you don't want to. (Though, for some specialty items, you will likely find that it is cheaper than buying things at the store - like some flour mixes.)

I guess we'll buy steak, chicken and potatos....what about snacks?

Sticking to whole, unprocessed, naturally gluten free foods is the cheapest, safest way to eat gluten free, but there is no reason that it should limit your diet, or take up large quantities of time. Like anything else, cooking foods from scratch without taking all day may be a learning curve if you don't already have those skills.

I have 2 boys (my 4 year old has some symptoms but I'm not going there right now).....this is so WELL I just simply don't have TIME for this...

Please do investiage your son's symptoms. Untreated celiac does lead to longer term complications, and there's no reason for him to suffer through symptoms unnecessarily. (Egg on my face if I'm mis-reading your post and you just mean you're not going to talk about them in this post. ) You don't have to be the one to do all of this, of course - your husband MUST be involved. And the two of you don't have the time for him to be sick either. Once you both have gotten over the learning curve, I *promise* it will be a lot easier. Yeah, getting past that learning curve is going to suck, but it will be better once you get out the other side. There are lots of things you can do to keep the gluten free diet from taking a lot of time (preparing, cooking, eating, and cleaning up dinner often takes us no more than 45 minutes, for instance, and can easily take less, and yes, that's cooking from scratch). It's just a matter of learning what you can learn, and figuring out what works for you.

[WalksonWater]

Thank you all so much. I feel better already getting input from people who are dealing w/this. I am going to have the blood test run on my 4 year old....we shall see. We can't see starting to eat Gluten again just for that biopsy...so we'll see what happens. Thanks so much. We bought lots of veggies, Jiff Peanut butter, Pace salsa, corn chips, V8......took us 2 hours at Walmart. Oh well, life could be worse.

[lonewolf]

Hang in there - it does get a lot easier with time. I've been doing this for 10-1/2 years and it's second nature now. I get in and out of the store in a flash now - without having to read many labels! One thing I've found to be helpful is to plan dinner menus for the month, decide on some basic breakfast and lunch ideas, make shopping lists ahead and then shop to your list.

[Guhlia]

Thank you all so much. I feel better already getting input from people who are dealing w/this. I am going to have the blood test run on my 4 year old....we shall see. We can't see starting to eat Gluten again just for that biopsy...so we'll see what happens. Thanks so much. We bought lots of veggies, Jiff Peanut butter, Pace salsa, corn chips, V8......took us 2 hours at Walmart. Oh well, life could be worse.

You're lucky you have a Wal-mart near you. Their store brand, Great Value, labels gluten free. You'll find shopping easy so long as you stick to the GV brand. There are a ton of options with GV brand, just be sure to check the label each time you go to make sure it's still stamped as gluten free. Some of your options: potato flakes for mashed potatoes, cheese, juice blends, butter, margarine, bacon, lunch meat, au gratin potatoes, pizza sauce, and pudding. Not all flavors and sizes are safe, so always check for the gluten-free stamp. Wal-mart saved me when I started the diet. Also, fresh fruits, meats, and vegetables should be gluten free too.

I would stay away from the Snyders stuff if it's Snyders of Hanover. I'm pretty sure their potato chips are done in the same facility as their pretzels which would mean lots of flour floating around. I usually stick to Tostitos. I know others have gotten glutened by them, but I haven't and I'm really sensitive. Also, if they have them at your store, Nibble With Gibbles potato chips are made in a dedicated facility.

[Guest nini]

check out my Newbie survival kit, simply click on the link in my signature below for my website, scroll to the bottom and there you will find the link for the newbie survival kit. It's free. It's just a collection of files that I wish I'd had when I was first diagnosed.

since he's been gluten-free for a few weeks already, it could skew the results of the biopsy, so don't worry if the biopsy is negative. He still has Celiac and needs to be gluten-free. As long as you are aware that the biopsy may come back negative because he's been on the gluten-free diet already then continue on with what you are doing. Me personally, I didn't have the biopsy, and I won't and I didn't put my daughter through it. Blood work and dietary response was enough for me.

[Luvs to Scrap]

I can empathize with you too. My husband and son are the ones with celiac but I do all of the cooking and most of the work in the kitchen. The first few weeks are the worst and then it does get better once you catch on to what is safe, where to buy things and what tastes decent. My DH's favorite meals are the ones where I can make something naturally gluten free. I make ham and beans in the crockpot, homemade chili, red beans and rice, scrambled eggs, etc. Tinkyada pasta has been a lifesaver for us since we have always been big pasta eaters. Our whole family eats and and it tastes fine to me. When I was first learning to cook gluten-free Bette Hagman's Gluten Free Gourmet books were a godsend. You might want to check one out from the library. I do order some stuff from Amazon in bulk. The guys like EnerG Foods tapioca dinner rolls and hamburger buns, pretzels, and I have gotten some other stuff too. They often have a special that you get $10 off a $49 purchase. It is fine to come here and vent! We all have days where this diet or its challenge almost or do put us over the edge. Some days it just frustrates me that we can't have an "instant food" day like other people. Later I remind myself how great it is that Jason is feeling so much better.

We just did the bloodwork and positive diet change too instead of the biopsy. Take care. Kendra

[zansu]

I actually spent several weeks just doing the research before I started the diet... I was not ready to commit.

BTW, My biopsy was negative, but he only took from one spot. Not an adequate sampling rate when you consider how much small intestine there is and that not all of it will be damaged. However, my results on the diet were undeniable.

You will get used to it. As several people said, stick to naturally gluten-free stuff, avoid, where possible processed foods until you get better at reading all those labels. It's the gluten-free substitutes that really kill the pocketbook and the diet! I think I ate more (gluten-free) cookies in the first few months of going gluten-free than I had in the entire year before -- that perverse sense of being denied...

[abigail]

as evrybody said already : dont desesperate, it gets easier...

I put my son on the Gluten free diet 2 months ago and its really easy now.

Im very frugal and I DONT SPENT MUCH MONEY ON THIS SPECIAL DIET!!!

I only buy special pizza and pasta (which is more expensive)

The secret for the rest its off course to find the regular Gluten free products (also the procesed ones).

Research here in this forum , send emails to the supermarket and ask them about their store brand gluten-free products, take the cell to the supermarket and cal the 1-800 s numbers from there...

once I discovered wallmart it was easy:

the things that my son loves and you can buy gluten free great value brand:

-alfredo sause/pasta sause

- Cheese (tons of tipes)

-olives

-bacon

-hamburgers /chicken/meat

-cheetos style snacks

-broil

-marshmallows

-rice/beans/lentils

-sour cream

-dips

etc!!

Abi

[Budew]

I understand Walmart is all there is for some folks. That's because they drive others out of business. I hope you Walmart Shoppers take the time to read about the way they treat their employees (especially women). Their cheap prices are due to low wages and government subsides. I personally wll NEVER shop there.

This company has become nothing but cut throat and greedy since Sam Walton died.

[debmidge]

Ok to vent away. I felt the same way the first year of my husband's celiac diagnosis. Sometimes I still feel that way but not as often as it used to be.

[NoGluGirl]

Okay so let me start by saying that I'm grateful that my husband doesn't have Leukemea or bone marrow cancer or cancer or something like what we were told it could have been. So my husband has had to have a blood transfusion and many tests before they finally say that the blood test is positive for Celiacs. Now it appears his low, low, low hemoglobin is due to malnutrition...Celiacs...it's not confirmed by biopsy that will take place in 2 weeks. We helped our selves and placed him on a gluten free diet for the past 3 weeks (no Dr.'s assistance...no dietary advice..nothing). Anyway so I've thought he's been on a gluten free diet and now I read about cross contamination in plants....can he NOT have a potato chip? Do we have to shop online and pay horrible prices +++ shipping? This sux...excuse me.....I really am grateful. So we are going shopping at WalMart tomorrow. I guess we'll buy steak, chicken and potatos....what about snacks? He's been eating Snyders Corn Tortillas (chips) are these CONTAMINATED TOO? I have 2 boys (my 4 year old has some symptoms but I'm not going there right now).....this is so WELL I just simply don't have TIME for this...after all I sit around all day long looking for somthing else to do (yea, right!)...~~~##+#+~~~Okay, I'm feeling better, thanks for letting me vent.

Dear WalksonWater,

I know what you mean. It is exhausting! I am very sensitive, though I am supposedly only gluten intolerant. The thing is, I had tests six years ago that came out negative. However, food enzymes did not help at all. If I am not a celiac, then how come a gluten-free diet is the only thing that helped? I have a yeast overgrowth as well. This is difficult for everyone around the person, too. My parents were stressed out because they found out I needed all new cooking tools and pans. We are on a tight budget. They are not as supportive as they could be though. My mother treats me like a hypochondriac. I am glad you understand how serious your husband's illness is. Just one lousy speck of this crap can make us violently ill. Someone touching a slice of bread and then touching our food can do the same thing. Please do not eat things we cannot eat in front of us. It is so cruel. No one understands. My favorite is Chinese food, and naturally, my parents eat it in front of me. I wanted to cry, the brought it home the other night. As if that was not bad enough, while we were out the other day, Mom got MacDonald's fries and ate them in front of me (they were my favorite)

and then the next day we went out she ate a soft shell taco from Taco Bell in front of me! I was angry and hurt. If you eat this stuff, please make sure you do it without your hubby around. Also, he should not kiss you when you have eaten it for six hours or so. This sounds extreme, but it is important.

In regards to snack food, cross contamination is a concern. I have eaten Lay's potato chips and been fine. I also have had Tostitos and was alright. However, some people on this board said they got ill from them before. Cheetos are safe, and so are Lay's Stax from the list. Doritos are not okay except for the Cool Ranch ones. There is a list on the forum. Go to Amanda's Mommy's blog!

Sincerely,

NoGluGirl

P.S. A lot of candies are gluten-free. Some of my favorites are Reese's Peanut Butter Cups, 3 Musketeers, and Butterfinger.

[mtdawber]

check out my Newbie survival kit, simply click on the link in my signature below for my website, scroll to the bottom and there you will find the link for the newbie survival kit. It's free. It's just a collection of files that I wish I'd had when I was first diagnosed.

Can you give me the url for your newbie survival kit... I'm definatley a newbie (just diagnosed December 20th) and I didn't see it in your signature. Thanks so much!

[Ursa Major]

Can you give me the url for your newbie survival kit... I'm definatley a newbie (just diagnosed December 20th) and I didn't see it in your signature. Thanks so much!

The link to her website is in her signature. Click on that, then scroll down to the bottom of her home page to find the links to the newbie survival kit.

[mtdawber]

The link to her website is in her signature. Click on that, then scroll down to the bottom of her home page to find the links to the newbie survival kit.

Found it... it's fantastic.... thank you... thank you...

[Aizlynn]

question on the cheetos, they have soybean, and hydrogenated soybean oil listed on the label, I thought that was a no no??? if not, I am about to have orange fingers again! thank you!

[kbtoyssni]

question on the cheetos, they have soybean, and hydrogenated soybean oil listed on the label, I thought that was a no no??? if not, I am about to have orange fingers again! thank you!

Soy is ok for celiacs (unless you are also intolerant to soy). I eat cheetos all the time with no problem!

[Electra]

Okay so let me start by saying that I'm grateful that my husband doesn't have Leukemea or bone marrow cancer or cancer or something like what we were told it could have been. So my husband has had to have a blood transfusion and many tests before they finally say that the blood test is positive for Celiacs. Now it appears his low, low, low hemoglobin is due to malnutrition...Celiacs...it's not confirmed by biopsy that will take place in 2 weeks. We helped our selves and placed him on a gluten free diet for the past 3 weeks (no Dr.'s assistance...no dietary advice..nothing). Anyway so I've thought he's been on a gluten free diet and now I read about cross contamination in plants....can he NOT have a potato chip? Do we have to shop online and pay horrible prices +++ shipping? This sux...excuse me.....I really am grateful. So we are going shopping at WalMart tomorrow. I guess we'll buy steak, chicken and potatos....what about snacks? He's been eating Snyders Corn Tortillas (chips) are these CONTAMINATED TOO? I have 2 boys (my 4 year old has some symptoms but I'm not going there right now).....this is so WELL I just simply don't have TIME for this...after all I sit around all day long looking for somthing else to do (yea, right!)...~~~##+#+~~~Okay, I'm feeling better, thanks for letting me vent.

Boy I'll tell you that this is soooooooooooo very frustrating. I have it and I'm sure my husbands tempermental attutude comes from the frustration he feels after years and years of me being sick and now he just thinks that I'm going to be "cured" just like that. I think it can be almost as hard for spouces to deal with then those of us who have it. My problem is that I have to clean up all the breadcrumbs and everthing left behind by hubby and my kids and hubby doesn't quite understand why I don't even want to handle anything with gluten in it. All I can say is try really hard to get through it and just hope that he gets better sooner then later.

Good Luck!!

[NoGluGirl]

Boy I'll tell you that this is soooooooooooo very frustrating. I have it and I'm sure my husbands tempermental attutude comes from the frustration he feels after years and years of me being sick and now he just thinks that I'm going to be "cured" just like that. I think it can be almost as hard for spouces to deal with then those of us who have it. My problem is that I have to clean up all the breadcrumbs and everthing left behind by hubby and my kids and hubby doesn't quite understand why I don't even want to handle anything with gluten in it. All I can say is try really hard to get through it and just hope that he gets better sooner then later.

Good Luck!!

Dear Electra,

I know exactly what you mean! I am the only one in the house that is gluten free. My parents are not. They think I am just going to recover like that, you know? It can be a slow process. My doctor does not rely on those tests much, because she has a had a small number of patients who had negative biopsies and negative blood tests such as myself who are celiacs. I am afraid to handle anything with gluten, too. My parents just act like I am a hypochondriac. It is not them who could get violently ill, why would they care? I am thoroughly exhausted from cleaning up after them. Even the coffee maker is a concern. This is all frustrating. Maybe I will switch to instant coffee or something. I heard Taster's Choice is safe.

Sincerely,

NoGluGirl

[Namma]

You call it venting I called it panic when we first found out about our granddaughter at age 1.

I would caution you about putting him a gluten free diet right away. Her Dr. had to rush her in for her biopsy once she found out the diet was changed. Apparently the villi starts to repair itself as soon as it becomes gluten free. There fore you won't know for sure if he has it or not. SORRY that you have to keep poisoning him but ask the Dr.

NO NO NO you do not have to go broke.

What he likes to eat and what he has choices of now will definitely change but there are a ton of everyday regular grocery items that are gluten free. I have emailed many manufactures and requested a list of their items that are gluten free. I update my files each year and I received a reply from S&W today, Beans, Tomatoes, Fruit and vegetables are all gluten free. So what do I do, I stick with S&W. I don't know where you live but Trader Joes is a great place to shop. Trader Joes and Whole Foods have printed lists you can ask for at their customer service counter.

I buy Arrow brownies and bake them for her to take home. That way my daughter freezes them in portions and when Abbey goes to a party she has her cake and can eat it too HAR HAR.

Jennie O, Oscar Mayer, Hormel, Nestle, Con Agra ETC ETC have great websites. Get in to your pantry and look for contact info for the stuff you normally buy then get on their websites no need to change things you've been used to unless you need to. I cook probably all normal stuff and make sure I do not cross contaminate when I know she is coming over. I have separate cutting boards, measuring cups measuring spoons and a mixing bowl and colander ETC ETC.

McCormick spices as long as their are not a mixture like 'Italian Seasoning" are gluten free they may have improved even their mixed ones by now. Mc Cormick Mixes, like chili or taco mix are gluten free.

Your situation is far different than mine because I only have to focus on what I am cooking when she is coming over which is alot but not everyday.

There are crackers that actually taste good and are gluten free. I buy the rice crackers.

I make spaghetti with Ragu as my base and add Hamburger, italian sausage fresh basil and fresh garlic. Ragu is gluten free and we eat Brown rice pasta. We couldn't stomach the Corn pasta. The taste was horrible.

Here's an example of what we had for Thanksgiving dinner

Jennie O Turkey

Mashed potatoes

Gluten free Gravy (packet) and regular gravy.

Green salad and all of the fresh fixins.

Fresh green beans

Fresh carrots

Jello

Stuffing ( a big no no) We tried the one last year made with Tostitos not as good and she could care less.

Before dinner

Fruit salsa over cream cheese and rice crackers

shrimp and cocktail sauce

Spinach dip and Sour dough Bread (a no no just the bread)

Artichoke dip

Tostitos, and salsa and guacamole

Weinies and BBQ sauce

The big no no's were the rolls, pies and stuffed mushrooms. I buy a bread for her at Trader Joes she loves, almond rice bread. her dessert was her brownies and little whip cream.

There is light.

I could go on and on but I won't. eating out will change DON'T TRUST NON gluten-free Restaurants. If they have a gluten-free menu there is security but don't trust that the chef will make your food separate in other places.

Good Luck to you and your family

[Kibbie]

Check out my blog (link at the bottom of this msg) I have a pantry list and once I got stocked up my grocery bills have not been that bad at all! 2 adults and a toddler and dog eating gluten free for about $100 a week