Extremely Overwhelmed

[my3kids]

While I am very grateful for this forum (I have learned a lot in just a week), I am completely overwhelmed by it. I was diagnosed about a year ago and have practically done nothing about it as I have had no symptoms. I realize how stupid that was (I am an RN and certified diabetes educator). But the past is the past and now I must get serious about this as my 8 yo daughter has just been diagnosed as well. We are going to tackle this together and I am now very committed, obviously.

I've been reading other posts and I am so freaked out. Should I have the HLA genes tested in my daughter and all my other children. Two of my children had the celiac blood work done and only one came back positive. What about other things like lactose and soy, etc.? Is she allergic to them as well. Or should I just calm down and start with total gluten elimination and go from there. While I am trying to get focused on the diet, now I am freaking out about shampoos and soaps and lotions.

Please someone break this down for me in manageable terms. I am really overwhelmed!!!!

[misdiagnosed6yrs]

While I am very grateful for this forum (I have learned a lot in just a week), I am completely overwhelmed by it. I was diagnosed about a year ago and have practically done nothing about it as I have had no symptoms. I realize how stupid that was (I am an RN and certified diabetes educator). But the past is the past and now I must get serious about this as my 8 yo daughter has just been diagnosed as well. We are going to tackle this together and I am now very committed, obviously.

I've been reading other posts and I am so freaked out. Should I have the HLA genes tested in my daughter and all my other children. Two of my children had the celiac blood work done and only one came back positive. What about other things like lactose and soy, etc.? Is she allergic to them as well. Or should I just calm down and start with total gluten elimination and go from there. While I am trying to get focused on the diet, now I am freaking out about shampoos and soaps and lotions.

Please someone break this down for me in manageable terms. I am really overwhelmed!!!!

Relax.

It is overwhelming. This was what I did... Google searched everything. Its funny though cause all of the searches came back to this place.

I typed in gluten free lotion, gluten free laundry detergent, gluten free shampoo... etc... I have so many lists, it could last a life time. There are many options out there and in no way should you feel limited. Celiacs can eat and do the same things as everyone else but we can only use certain brands. For instance chocolate. We can't have Godiva but we can have ghiradeli or dove.

I could go on with examples. I would start with the staples. Condiments that are gluten-free, then make a list of foods that you eat on a regular basis and find the brand that YOU can have. (and daughter of course)

This is not going to be easy. What you'll need to do is find out where gluten can hide. Example, spices and seasoning or vinegar. You will have to learn how to read labels. But I def suggest making a list of food (by brnad name!) before you go shopping. I also think you should have your whole family eat gluten-free in the house. It will be easier for you and your daughter plus there is a chance that the other children have the gene.

Don't worry about the soy, egg, dairy until you have the gluten figured out. You may not even have to worry about those so why start now?

I have so many lists, you can send me an email and I can send you them. They consist of foods that are gluten-free, foods that are NO longer gluten-free, words that conceal gluten, safe words that confusing but safe from gluten..... Comapnies that clearly mark wheat/gluten on the label. Snacks, chocolate, comfort foods.

I also have healthy food lists. Things that are easy to cook.

I started a website for newly celiacs to find everything they need. I can't post it here, I think it's against the rules. But I can send in an email if you want. It links to many places where you can find help and people who blog about gluten-free foods. Those sites have excellent recipes! and they are usually very encouraging people.

Start with the basics and don't let your self get overwhelmed.

Good Luck.

No matter what lies ahead, you should know that this website has many caring and informative people. If you get frustrated, they are here. If you need to know if something is gluten-free, they will tell you.

Bobbi

[misdiagnosed6yrs]

I have so many lists, it could last a life time.

One thing I forgot to say is that although something may be safe today, it may not be tomorrow. That is frustrating as well. So although I have these lists. I still need to check the labels every time.

Its much easier to buy in bulk!

[dandelionmom]

I know how overwhelming all this is! Here's some books that really helped me:

-Kids with Celiac Disease : A Family Guide to Raising

Happy, Healthy, Gluten-Free Children by Danna Korn

-Living Gluten-free for Dummies by Danna Korn

-Eating Gluten-Free With Emily: A Story For Children

With Celiac Disease by Bonnie J. Kruszka and Richard

S. Cihlar

I think it is a good idea to take her off of dairy for a few months to give her intestines a chance to heal. That's what we did for our daughter. Kids heal quickly so she'll probably be able to tolerate dairy just fine before you know it.

Best wishes!

[my3kids]

Relax.

It is overwhelming. This was what I did... Google searched everything. Its funny though cause all of the searches came back to this place.

I typed in gluten free lotion, gluten free laundry detergent, gluten free shampoo... etc... I have so many lists, it could last a life time. There are many options out there and in no way should you feel limited. Celiacs can eat and do the same things as everyone else but we can only use certain brands. For instance chocolate. We can't have Godiva but we can have ghiradeli or dove.

I could go on with examples. I would start with the staples. Condiments that are gluten-free, then make a list of foods that you eat on a regular basis and find the brand that YOU can have. (and daughter of course)

This is not going to be easy. What you'll need to do is find out where gluten can hide. Example, spices and seasoning or vinegar. You will have to learn how to read labels. But I def suggest making a list of food (by brnad name!) before you go shopping. I also think you should have your whole family eat gluten-free in the house. It will be easier for you and your daughter plus there is a chance that the other children have the gene.

Don't worry about the soy, egg, dairy until you have the gluten figured out. You may not even have to worry about those so why start now?

I have so many lists, you can send me an email and I can send you them. They consist of foods that are gluten-free, foods that are NO longer gluten-free, words that conceal gluten, safe words that confusing but safe from gluten..... Comapnies that clearly mark wheat/gluten on the label. Snacks, chocolate, comfort foods.

I also have healthy food lists. Things that are easy to cook.

I started a website for newly celiacs to find everything they need. I can't post it here, I think it's against the rules. But I can send in an email if you want. It links to many places where you can find help and people who blog about gluten-free foods. Those sites have excellent recipes! and they are usually very encouraging people.

Start with the basics and don't let your self get overwhelmed.

Good Luck.

No matter what lies ahead, you should know that this website has many caring and informative people. If you get frustrated, they are here. If you need to know if something is gluten-free, they will tell you.

Bobbi

Bobbi, thanks so much for your support. My email is hmconnick@aol.com and would appreciate any help. I have googled alot and am so grateful that we have the internet. I can't imagine doing this 15 years ago. Things like vinegar, soy, MSG are confusing me but I'm sure I'll figure it out. I will take your advise and start with the basics. Not sure what to do about the dairy as many people think I should take us off of it. My daughter just said to me "thank God I can still have yogurt, ice cream and milk". I'd hate to take that away too. Although I will if everyone that has dealt with this thinks I should.

I must say that in the 7days she has been as gluten-free as I could do with the amount that I knew, she has been MUCH nicer!!! Does the gluten affect mood and behavior that much? And can you have such a quick improvement in mood. Thanks again.

[misdiagnosed6yrs]

I must say that in the 7days she has been as gluten-free as I could do with the amount that I knew, she has been MUCH nicer!!! Does the gluten affect mood and behavior that much? And can you have such a quick improvement in mood. Thanks again.

That is so funny. I was much nicer too. You feel better and body is more balanced therefor controlling possible mood swings. After going gluten free I came off my mood meds that I was on for 10 years. They were makingmy heart beat right out of my chest and I never knew. My heart rate got to 198 in just 5 minutes working out. So they took me off and thanks to the gluten free diet, I havent needed them.

I also had very bad insomnia. I was confused and my body felt weird. Like I had to concentrate on everything I was doing or I would be lost. But I sure was a nice person! I'm sure everyone reacts differently.

I will get that info out to you. Please remember that even though the food is on the list, you still need to check the labels.

[WW340]

Hi, I know how overwhelming this feels right now. The good news is that it won't be too long before you will feel like an old hand at it.

Not everyone cuts out the dairy initially. Personally, I decided to cut out the gluten first and see how things went. I did fine with dairy.

I started the gluten free diet by first removing all gluten containing products from my home. I cleaned everything very well and examined my pots, pans, and kitchen utensils. I got rid of anything questionable. I bought a new toaster oven.

I also got rid of all open condiments that could have been contaminated, like butter, mayo, mustard, etc.

While I was getting rid of these things, I made a list of what I needed to buy. I searched online for the gluten free brands I could use from the regular grocery store, like hellmans mayo or kraft, etc.

I bought several of the Amy's frozen gluten free dinners initially so I had something quick to fix while I was learning. I also got some mission tortillas and chips to use for quick bread substitutes until I had time to figure out other bread options.

Don't try to just go to the grocery store and find things. It took me about 2 hours the first time I did that and I gave up in exasperation. It was not fun. Research online and make your list, then just verify the labels to make sure they are still gluten free.

I kept things very simple in the beginning. Fresh meats, veggies, potatoes.

Most of us need some fast food options, esp. with kids for those times we are out and don't have something available to eat. I searched for fast food options and found what seemed the best choice for me - for me it is wendy's for the chili or baked potatoes. I kept it very simple and limited so that when I found myself out and needing a quick bite it was automatic - find a wendy's and I knew what to order.

Oh, and treat yourself and your daughter to a Pamela's chocolate cake - easy to make and guaranteed to make you feel better.

[Eriella]

I agree with what was said above. I found out that I had gluten issues 10 days before I started a 50 hours a week job and had to start cooking for myself for the first time. My advice is to keep it super simple. For the first month all I ate was whole foods that were super simple (cheap and easy to cook). I would only eat things that either said gluten free or were made of one ingredient.

I found out that McCormick seasonings, George Forman grills, and Herbox chicken bullion were my stables. What I ate for almost every lunch and dinner was grill meat (seasoned with the spices or lemon juice), brown rice (make it with a bullion cube to give it flavor), and steamed veggies. For breakfast I would have lots of fresh fruit and Gorilla Munch cereal. Snacks would be almonds or fruits and veggies.

I also didn't cut out any foods. However, I went low lactose (ie I still had cream in my coffee and cheddar cheese) for awhile. I figure that if you eat low allergen foods (which other than some of the fruit and the nuts I did), it will be easier to figure out if something else makes you react. Even though I occasionally had eggs, I found that if I eat eggs every day I get sick, but once a month or so I am fine with them. Similarly, I found (after an Amy's dinner and memories of some of my dad's cooking) that tofu and I don't get along. This doesn't mean I have a soy allergy, it just means that I shouldn't eat it very often.

For me there was no reason to do formal elimination diet if you can figure it out informally.

[aorona]

Mood is very much affected by gluten when you have celiac disease or are gluten intolerant. Your body is not getting any nutrients and is basically shutting down. Of course you are going to be cranky, ditzy, and moody. Other symptoms my oldest son had were not being able to concentrate, hyper activity, basically the same symptoms as ADHD. In the beginning of the gluten-free diet. I was sick for about a week before I completely cleaned out my fridge and pantry and started over. It was expensive, but it turned out to be the best thing I ever did. Now I am a pro at speed reading labels!! LOL !!!