New And Confused Please Help

[paula]

Hello there, my 4 year old daughter has tested positive with a blood test (IGG I think) I am still awaiting the results of a second blood test. I read somewhere that the IGG test may be postive but the person may not have Celiac disease. Her level was 57. The GI specialist we are seeing wants her to have the biopsy on Monday and doesn't feel it necessary to wait for the other results. Can someone please clarify if its not Celiacs what else it could be and whether or not its a good idea to wait for the other test result. My huband and I have no prior knowledge of this disease and things are moving so fast. I really appreciate any advice you may have to offer.

Thanks.

Paula

[Guest Evelyn's mom]

Paula,

Did you go through with the biopsy? And what were the results? I just ran across your posts and was curious how things are going for you now. My daughter was diagnosed almost two years ago with a positive biopsy after inconclusive blood tests. The first symptoms she had were slow weight gain, large belly, and low iron. We didn't start testing procedures until her symptoms became very severe because we (her doctor included) had no idea what was wrong. Your doctor seems proactive and that's great!

RaeAnn

[paula]

Hi RaeAnn,

Its been difficult to say the least. However we are getting by. My daughter's biopsy came back positive and I just received a call saying my blood test is positive. I am still awaiting the results of my younger daughter's blood test. I am guessing that it won't matter as we are already eating gluten free. It seem to be the easiest way to keep my daughter eating.

How old is your daughter? How soon did you notice a difference in her? I am so anxious to see her belly disappear.

Thanks for the reply. Take care.

Paula

[ashlees-mom]

Paula, I'm glad to hear you have an answer, and I hope all goes well in testing your other daughter. I don't know how long you have been gluten-free, but I noticed my 4 yr old daughter's appetite surge after about 2 weeks. She probably gained 5 pounds in a week! That is completely unheard of for her! She would eat like the people in Survivor when they finally get food!! I hope things are going well for you. Ashlee still has the belly, but I have heard that takes a long time to go away. Since everyone varies, I figure at least a couple months, probably longer, but I don't really know. Ashlee has been gluten-free 6 weeks now, and I am also noticing her skin is softer than it has been in SO long. I never even really noticed it getting dry, it just happened so slowly it seemed normal I guess, and her hair is looking better too. It helps me to find things like that I see improving so that I don't worry so much about things that take longer (like the belly). I haven't noticed any growth in height yet, but I figure she is just catching up in weight first.

Michelle

[Guest Evelyn's mom]

Hi Paula and Michelle,

I asked my husband if he remembers when her big tummy returned to normal and honestly that was the least of our concerns at the time because of all the other symptoms she had. Evelyn will be three in June. She started showing symptoms at about 9 months. Her symptoms progressed to awful diarrhea, very crabby, scowly face all the time. She had a lot of psychological issues and behaved autistic in many ways. She was so thin, I look back at pictures of her from then and just want to cry. There were times that she would just lay on the floor and sleep all day just pale and weak. Those were the things we were so relieved to have disappear. After two months on the gluten-free diet, her grandmother said she could barely recognize her, her countenance became that of a cheerful, happy, loving baby. And like Michelle's daughter, the weight just started piling on. She was 13lbs at 13 months old and gained 4 lbs in the first two months of being gluten-free. Michelle, you mention your daughters hair, we never really connected that but Evelyn was born with brown, curly hair that stood up all over, not that it's abnormal but my husband and I and our other two children have very blond hair. After being gluten-free for just a few months her hair softened, started growing and is now just as blond as the rest of us.

I think the belly was gone after about 2 or 3 months. Now that she's been gluten-free for 20 months, there is no belly accept for a very normal pot belly like her sister. She is constipated now though and I've been frustrated by that. Today was a big day for her she actually went pooh in the potty for the first time but being as constipated as she is, she can barely get it out. If you find your daughters having that issue let me know. We went from one extreme to another and it seems I can't get enough fiber into her.

Evelyn still is very low on the growth charts for weight and is very short compared to what her siblings were at her age. I pray her growth hasn't been stunted.

Paula, did your doctor just advise you to get the blood test done or did you have symptoms as well? Our family got tested last October and all came back negative.

How are you all doing adjusting to the Gluten free diet?

God's Blessings to you,

RaeAnn

[paula]

Thanks RaeAnn and Michelle for your responses. It has been 2 weeks yesterday that my daughter has been gluten-free. I started the same time however with an upcoming biopsy I have had to re-introduce gluten to my diet. I have become very sick. I am so shocked that I am feeling so crappy because I never noticed it before. I am also finding that I never seem to leave the kitchen. I have to admit that I was pretty much a "prepared" purchaser in that everything I bought was all ready to go. Now I am left to do that myself so I spend all morning and most of each afternoon making things. I have done bread, pancakes, cookies, a banana chocolate cake (yum), muffins and this afternoon I am tackling pizza dough. I need a hobby (lol). Anyways, I'd love to hear how you handle all the time this way of life seems to take.

Paula

[ashlees-mom]

RaeAnn, are you sure your daughter's constipation isn't related to potty training? Sometimes it can happen. We haven't had any with Ashlee, but who knows, I think it can be tied in with celiac disease. Evelyn's symptoms sound a lot like Ashlee was like, but hers started slower. First we noticed slow growth for a while. When she turned 3 we thought it was strange that she didn't fit into a 3T yet, she had always hit right on before, but we just figured she was due for a growth spurt, only it never came! She grew a little, but not normally. Then in Feb she got the diarrhea. About 4-6 times a day and she started getting really lethargic and skinny and pale. She didn't really have the attitude that people talk about, but she has always been VERY shy. I have noticed her being more outgoing with kids now, so I think part of that anyway was tied to the Celiac. I really believe our kids will make up for lost growth! I think it might just go slowly over time. I figure if Ashlee got back up to the 50th% where she was as a baby it would mean growing like 6 inches in a year. It might be better for them if it is spread out more over time!

Paula, I think I am in the same boat being tied to the kitchen all day! Only I haven't started baking really since we completely cut dairy out of her diet. I didn't want to have to go through all that and have it taste funny with some other substitue in there. I think the diarrhea is finally slowing down, so I am starting to reintroduce dairy. Luckily she was happy eating the same porcupine meatballs day after day and deviled eggs, so it made it easy for awhile, but she is starting to want more variety! I think it helps to make a bunch and freeze some, but the bottom line is, I am really missing easy junk food! Oh well, I guess I had to learn to cook sometime!

Oh no, she just had diarrhea again! It is so frustrating, it is never more then once a day, and she will go several days in a row without any, then get it again. This time it was right after cheese though, I hope she does not have a permanent lactose intollerance. That one would really be hard, I keep telling her all the things she can have once she can have dairy again, so she would really miss it. After 6 weeks gluten-free shouldn't the diarrhea be gone? It frustrates me that so much varies person to person, I really like things black and white!

Michelle

[Guest Evelyn's mom]

Hi there,

Michelle, You are so right about the growth being spread out over time...never thought of it like that but accelerated growth can be pretty painful for kids. Evelyn is wearing 3T clothes now (loose fitting)and she is almost 3 so thats a great encourager.

Evelyn's actually had constipation since she was about 2, it's something I battle daily with making sure she's had enough water, prune juice, metamucil, and now I've added flax to most of my baking. We also have tried the old wives tale of a spoonful of corn syrup each day...not sure if it works but she sure likes it.

So Ashlee's been gluten-free for 6+ weeks and she's still having diarrhea? Is it the same as before going gluten-free? (Evelyn's was very foul smelling and fatty for example). I would just making sure there isn't something you might be overlooking. I made some frosting once and put in too much butter so I needed more powdered sugar. I ran to the store, grabbed some and finished making the icing. Of course since I had so much I used it for that cake and then froze it for holiday cookies. Months later Evelyn ate some cookies and just got sick (diarrhea). I looked at the powdered sugar package and about cried. It had wheat starch in it. I hadn't even bothered checking because the brand I had before was made with corn starch. Here I had been so vigilant for so long and then totally messed up on her cookies for goodness sake! I also just learned that the clay I had let her play with was made with wheat starch. She didn't get sick so I don't think she consumed any. Anyway, I'd check everything again to be sure (toothpaste, lotion, shampoo etc...)

Hard Cheese as far as I know doesn't contain any of the lactose (milk sugar). It does however contain casien (milk protein). Is this something you've considered might be causing a problem for her?

Paula, welcome to the kitchen!! It lessens over time as you develop your favorite recipes. I know the trial and error stage seems very time consuming. I bake for about 4 hours every two weeks and freeze the bread, muffins, cookies etc... Daily meals (supper) still takes about 1 hour to prepare since most things are from scratch. I have learned subtitutes for all the meals we used to eat BC (before celiac ) including flour tortillas although the real time consuming ones I only get the energy to make about once a week. I have learned to really appreciate Hormel...they have a lot of gluten free food, high in sodium and really no nutrional benefits but quick and sometimes that's what you need!

Hope all goes well with your biopsy, Paula. Let us know how it goes.

RaeAnn

[ashlees-mom]

Good morning,

RaeAnn, thanks for the advice. I checked on her toothpaste, but I do need to check on the shampoo and lotion. I read the ingrediants and didn't see anything, but that doesn't mean much does it! The good news is that she hasn't had any diarrhea since Friday. I know they say that cheese is easier on the lactose, but my mom is severely lactose intollerant, and she can't have any (unless she takes Lact-aid). I have started baking with milk, I made her some pancakes yesterday and she was fine, so I am going to attempt bread today!! What tortillas do you make? Ashlee won't eat the corn tortillas, that would be too easy! I really think everything she is eating is gluten-free, I worry that it is cross contamination. I am really careful, but between cooking for us, her little brother, and the daycare kids, I am wondering if I have goofed somewhere. The nurse kept assuring me that it sounds like it is just taking her body awhile to heal though. I don't know, if it happens less and less frequently like it is starting to, maybe we are on the right track. It doesn't have quite the stench they had before either, though when she has it, it is really watery still. The more gluten-free meals I can make that the whole family likes, the easier it will be, and letting her have dairy opens that window a bit, so maybe it will help. We are moving in 7 weeks, and I won't be doing daycare anymore, so I think that will be a a huge help!

When is your biopsy, Paula? That is interesting that reintroducing gluten is causing a reaction (but it sounds painful!). I haven't been able to be checked yet, so I find that really interesting. I know my mom doesn't have it, but other than that, I don't think anyone else in the family has gotten checked yet.

[paula]

Hello Michelle and RaeAnn,

I have been away for the weekend and just got to checking the board. Looks like Amy may have gotten some gluten or maybe a flu bug she had diarrhea and nausea all day Saturday. I can't figure out where it could have come from though. The good news is that it only lasted the day.

As far as my biopsy goes I am meeting with my family doctor on Wednesday to get a referal to a GI so I can then have the biopsy. I have been feeling awful since I started eating gluten again. I have opted to keep it to a minimum. Michelle I think that the reaction is because I do in fact have celiac disease as my blood tests is positive and Amy has it I believe that its pretty much inevitable.

RaeAnn, I am finding that I am at a loss for quick and easy meals. I hope it gets a little easier. Do either of you happen to have a good vanilla cake recipe? I am looking to make something for this weekend for Mother's day that everyone will enjoy?

Have a great day.

Paula

[ashlees-mom]

Paula, I didn't realize you had tested positive on your blood test. I am wondering if my husband or I have it, but we are still trying to pay for all Ashlee's testing and since we don't show signs it will have to wait a bit. I would think that your reaction is pretty clear though huh? We haven't gone gluten-free, but we are trying to find gluten-free dinner ideas since I don't like cooking 2 meals each night! We did stir-fry last night. It was fun, my husband likes cooking that type of thing, and we found some rice noodles that were really good. I would use them in place of angel hair pasta too. I am trying quite a few new recipes this week, so I will let you know what I think of them. I have the incredible edible gluten free cookbook (somewhere in there something about kids too)! I have liked what I have used out of there, but most contains dairy so it had been off-limits until now. The stir-fry was pretty easy, especially if you cut up the veggies before hand it would be quick. Ashlee loved that we were all eating the same thing! Sorry, not much help on a cake. I made the carrot cake out of that book, it seemed best really fresh, but I hear there are great cake mixes out there. There are also recipes in that book for one too, I just haven't used it. I did find that Pillsbury cream cheese frosting was gluten-free (and lactose free, they use soy) so that was good. Ashlee was happy to eat plain frosting when everyone else ate cupcakes! That was before I found the carrot cake that was dairy free! See, there are sometimes we can "cheat" and still use packaged food!

It is frustrating trying to figure out where that gluten could have come from huh? I called on the shampoo and everything, it all seems fine, but I am waiting to hear back from the lotion. Well, I still need to bake that bread, better get going!

Michelle

[Guest Evelyn's mom]

Hi ladies,

Corn tortillas...no one in this house will eat them unless they are fried, I made the mistake of frying my own taco shells with the corn tortillas and they turned out so good that my husband begs to have those instead of the store bought taco shells that are gluten-free. The brand I use is La Banderita Ricas white or yellow corn. They're available in the Mexican foods area in our grocery store...hope you can find them as well. The website is www.olemexicanfoods.com. We have come to love Mexican food since cooking for Evelyn. Here's a couple of ideas for you if you can locate these tortillas.

-Fry in corn oil for <10 seconds per side, salt lightly and set aside.

brown ground beef with all of your favorite seasonings. I occasionally use Old El Paso taco seasoning (only the mild that does NOT state "try with chicken" on the package is gluten-free) otherwise I use a blend of salt, pepper, dry minced onion, garlic powder and cumin. Add shredded cheese to the mix and spoon onto cooled, slightly cooked and greesy tortillas. Wrap tight and pin with toothpicks. Bake at 350 for approx. 15 minutes and voila, taquitos. Serve with your favorite gluten-free salsa, sour cream etc...

-For a quick pizza treat, fry the tortillas a little longer, let dry. Add pizza sauce, Hormel pepperoni, and mozerella.

-cut tortillas in 4s and fry till crisp, yummy freshly made chips.

I've tried using these for enchiladas but they get pretty soggy. The flour tortillas I make from scratch (very rarey now) are hard to make and very time consuming but work for enchiladas, they're not very good plain (for a wrap) unfortunately. Let me know if you want that recipe.

Paula for a pretty decent, easy cake I've used the following recipe:

Ingredients:

1 1/3 cups cornstarch

1 1/3 cups potato starch (I use Bob's Red Mill)

1 Tablespoon plus 1 1/2 teaspoons baking powder

1 teaspoon salt

2 1/2 teaspoons guar gum

1 cup sugar

2 eggs

1/4 cup oil

2 teaspoons vanilla

2 cups milk, divided

Directions:

Preheat oven to 350. In large bowl, combine all ingredients except 1 cup milk. Mix well to remove all lumps from batter. Slowly add remaining 1 cup milk. Mix well.

Pour batter into two greased 8- or 9-inch round pans or into greased 9x13 pan. Bake 25 minutes, or until toothpick inserted in middle of cake tests clean.

This recipe is from "The Gluten Free Kitchen" By Roben Ryberg titled "Yellow Cake"

The cake is a little heavy like pound cake. I usually make it into cupcakes and like Michelle said, I also buy Pillsbury's frosting for it.

My husband's birthday is coming up. The only cake he'll eat is his mother's German Chocolate cake. So I'm going to attempt Bette Hagman's recipe in "The Gluten-Free Gourmet". The only bread I bake is her "True Yeast Bread" It takes a while to get used to using 16 different ingredients for bread but over the last 18 months I've gotten it down to 4 loaves in 2 hours! I don't use it for sandwiches though, only toasted...we eat A Lot of toast!

The one thing I missed the most was the ability to use cream of anything soups until I got the following recipe. Now I'm able to make all the casseroles, cheesy potatoes etc...that I made in the past:

Cream Soup Base:

Mix well:

2 cups nonfat dried milk

1/2 cup cornstarch

1/2 cup potato starch

2 Tbsp. dried minced onion

1/2 tsp black pepper

Store in Refrigerator.

Cream of chicken:

1/3 Cup soup base

1 Cup cold water 1/3 cup finely chopped chicken (I usually omit this to save time)

2 tsp. chicken boullion (Herb Ox)

1/4 tsp. parsley

Dash of celery salt

Mix and heat over Medium heat, stirring constantly until smooth. Lower heat and continue cooking 5-10 minutes more stirring occasionally until thick

Cream of Mushroom:

1/3 cup soup base

3/4 cup cold water

1 4oz. can mushrooms, undrained

2 tsp. chicken boulliion

1 tsp. butter

Dash of nutmeg

Special Prep: Mushrooms can be chopped in own juice in blender, or drain juice into pan and chop mushrooms with chopper.

Cream of Celery:

1/3 cup soup base

1 cup cold water

1/2 cup finely minced celery

1 tsp. butter

2 tsp. chicken boullion

1/4 tsp celery salt or seed

Special Prep: Simmer celery in butter and add water in a covered pan until tender 5-10 minutes. Then cook uncovered until most of water is evaporated.

Cream of Tomato:

1/4 cup soup base

3/4 cup cold water

1/2 cup tomato paste

1/2 tsp. paprika

1/2 tsp. celery salt

1 tsp. butter

I believe I got this recipe from the Milwaukee Celiac Sprue Crew.

Enjoy,

RaeAnn

[Guest Evelyn's mom]

Michelle,

Are you driving distance to Chicago or will you be when you move? In October, the University of Chicago has free screening for Celiac Disease. I've gone the last two years with all of my newly suspected family members and friends in tow. The cost of the trip to Chicago might be less expensive for you than testing through your doctor. You do need to consume at least 2 grams of Gluten for 6-8 weeks before the test.

Happy packing! Are you relocating to a new city?

RaeAnn

[ashlees-mom]

RaeAnn, thanks for all the recipes. I tried cornbread and white bread yesterday. Ashlee really liked the cornbread, but we didn't try the white bread, I don't know if it rose at all. The recipe said it would be like thick cake batter, but mine was more like play-dough! Oh well, pick up and move on, the cornbread was easy! Can I get your recipe for your bread too?

No, I am nowhere near Chicago! I live in Oregon and will be moving to Texas! I wonder if anyone else does it? I don't know if I could get my husband tested even if it were free, but it would be worth a try! I have thought that if I have a positive blood test, combined with Ashlee's case, I would just go gluten-free. I'm hoping once we get settled in Texas we might have better insurance and I can get tested cheaper.

Well, we tried pork chops with herb gravey last night. It was pretty good! My one year old loved it! (and he doesn't even have to be gluten-free!) I think he ate a whole pork chop! Tonight we are taking a break from the new stuff and having taco salad. Maybe I will try making my own tortilla chips though, thanks to RaeAnn! I told my husband I am turning into a better gluten-free cook then I ever was before! Once you lose that crutch of easy meals, you are forced to learn!

Have a great day ladies!

Michelle

[paula]

Wow, I have been away from the board for a few days and I just checked in. RaeAnn thanks for all the recipes. I can't wait to try them. I am just going to start dinner. Hope you are all having a good week. Will update later about my week.

Paula