My lttle guy eats avocados, sunflower seed butter, hemp seed, ground flax, full-fat yogurt (lemon, mediteranean-style). He loves them all.
post #21 of 45
10/16/07 at 1:26pm
For the record, my dd also tested negative for celiac on bloodwork. But I have no doubt at all that she has celiac. She had more defined symptoms... classic celiac symptoms. And her recovery was classic. But... what I've found out is that the *average* time it takes to get a celiac diagnosis is 5 years. And many people go 10 years!
As for time to see results... we saw growth in the first month. In the first few weeks of that, we saw improvements in personality, in her vitality, in her speech... it was incredible. Even her coloring improved. There was no way after seeing that that we were going to put her back on daily gluten to retest. And this wasn't just us seeing the improvments (which could be attributed to our hoping to see things or some such foolishness). She went from needing speech therapy to testing way above. (speech usually isn't on the list of celiac symptoms... so dont' discount what I'm saying if your son doesn't ahve that). She grew inches in the first couple of months... went from 2T clothes to 4/5 within 6 months. She had always had a heathy appetite but she suddenly acted like she was starving. People who see her occasionally (from once a week to once a year) are amazed at the difference in her. She's like a complete different child. And the changes started after the first week.
I am convinced as I read more that celiac is probably like diabetes. You can have varying abilities to handle sugar well before you are considered diabetic. It's a gradual thing. To be diagnosed with celiac desease, you need positive bloodwork (which indicates that damage is in the process of happening) and a positive biopsy which indicates that damage has been done to the intestine. But what about the stages before the issues show up on bloodwork (it usually takes longer to show up on bloodwork then to show up on biopsy. But... they don't do a biopsy until you have positive bloodwork. It's weird in that way.) or before you end up with enough intestinal damage to show up on biopsy? If you know that your child does better off gluten, do you want to wait until they have done enough damage to your body to be diagnosed?
We asked ourselves that question and decided that for our dd, it was more important that she grow properly at this point then that she have a proper diagnosis. And it's not like diabetes where you need regular bloodwork to adjust medications and all that. With celiac, all you do is change the diet and after that the bloodwork is just to make sure that you're responding properly. Which we could see very clearly.
So... we just took her gluten free and have called that good. I have no doubt though that she has celiac. We just dont' have a diagnosis that the medical community has approved.
We also have kept my youngest son gluten free because he very obviously reacts to gluten both in my breastmilk and when he eats it. It's not pretty when he reacts. So why cause his body damage when we can prevent it? Unfortunately that means we won't have a diagnosis for him until he's older and wants to go through a "gluten challenge".
As for eating... it's overwhelming at first. But that's becasue it's too easy to focus on what you can't eat then on what you can eat.
For breakfast, if he likes cereal, look for cereal by envirokids. They have cereals like corn flakes, kix, cocoa puffs... all gluten free. If you don't have that brand at your local grocery (look in the health food section too) then go with General Mill's Dora, Little Einsteins or Mickey Mouse. Dora is the one I like best for my youngest... not all the extra food colorings.
For lunches, get creative. Tinkyada makes a great pasta. For spagetti, I like corn spagetti best. There are some easy bread recipes but for a start, I like the Bob's Red Mill GF Bread Mix. It mixes up quickly and though I don't like the dough flavor, I do like the finished bread. I have other recipes I can pm you that work well to throw in a diaper bag or as a food to carry around. All peanut free.
For suppers... to start out I did a meat, a veggie and then rice or potato until I started realizing that other things were easy to cook and GF.
Dessert... there's always ice cream. My family is huge on that anyways so that was a no brainer for me. I like to cook pies without the crust (custard type pies...). Or I'll do other things. I have applesause muffins in the oven right now that taste great plain but make really special cupcakes if you add cream cheese frosting.
And so on and so forth. Focus on frust, veggies and meat and add rice/potatoes for your starch as you're starting out. From there it gets easier and less overwhelming. After you make it through a week of GF, you start to realize that it's not so bad and you start to get creative.
My advice would be to set up a one week GF menu and then each week after just add one new food or recipe. You'll start being amazed at how well you're eating. I am.
I will say though that the first couple of trips to the grocery store were depressing to me... I kept seeing what I couldn't buy anymore instead of what I could buy. Now we stick mostly to the outside of the store which is not only healthier, but also cheaper and faster.
one thing that really helped us was that the healthier he got, the less and less picky he was about food, and I've heard other parents say the same thing happens with them. The pickiness must be related to their general health. We also delayed any restrictive diet for fear our son would lose more weight, he would barely eat 5 things and the list was always shrinking. So the things we started with were very simple and nutritious, but like cyneburgh said, the result of going GF were so dramatic (as was the one month gluten diet we later ate to do the blood test) that we don't care that the blood test is negative - we see the difference clearly. Taking gluten out sounds huge, because it is in so many things, but it's so easy very quickly and you should know within a month if it's a helpful path for your son. That said, I think my son's gluten intolerance is part and parcel of our family's digestive health, and his improvements are much stronger if we also supplement with good flora and oils. Whatever you chose to try, believe in it optimistically and solidly and your son will pick up your state of mind. This is huge, I think, if I waver my kids rebel totally, but if I am sure and firm, they accept things willingly. It was very difficult to be sure and firm while worrying about every ounce and every bite, so that was a learning curve for me.
This is actually quite common. One little girl in our local support group was dx'd without any symptoms at all other then being small and in low percentiles for her age. The bloodwork was definitely positive though.
Sending you a pm with a couple of recipes that work well with my toddler.
The baking comes. The best thing I was told for that was to make up "mixes" for yourself. Basically put all the dry ingredients into a ziplog bag and lable it. Then when you want to bake, it's as easy as putting moist ingredients together, dumping your bag of dry in and mixing.
GF bread is more like a quick bread too. No major kneading. Your mixer does it and you might let it rise some but that's not bad.
You will do more whole food cooking. But even that you can figure out and it gets easier and faster. Crock pots are your friend!
Read ingredients carefully at first. Soy Sauce for example... big culprit. celiac.com is a great site to start at.
Because if some of the comments in this thread about cystic fibrosis, I just wanted to say something. CF can never be ruled out completely. Based on the symptoms you have described, it may be worth looking into a little more. I am not sure how your dc was tested, but there are many people who test negative for cf (thru sweat tests) who later learn that they are actually positive via genetic testing. More and more people in the cf world will tell you that the best way to get peace of mind is thru genetic testing via Ambry or Quest. These two labs are the only ones who test for all KNOWN mutations (over 1300!). Even then, there is always the possibility of carrying a gene that has not been identified yet. That is why it can be so important to look at the whole picture (all test results, symptoms, health, etc). CF is a very complex condition and it is not always easy to diagnose. Not everyone with cf will exhibit the same symptoms and there are many who have barely any symptoms at all. It can affect people very differently. Anyway, I hope this is really not the case for your precious child, but I had to say something.....CF most definitley cannot be ruled out completely until full genetic testing has been completed (and that's not even 100% for sure either). I hope you get some answers soon and I wish good health to your child always.
We did not follow through with complete biopsy for this son he was too sick. I firmly believe if we had not gotten a doctor to know what was going on with him he would be dead right now. His metabolic tests indicated muscle wasting and his heart developed some problems -- muscle wasting could mean he was using up his heart muscle. No doctor told me about the tests indicating muscle wasating, I read all of his labs, looked up each test, and had some wise help from a gluten free forum community - braintalk, then neurotalk, and now glutenfreeandbeyond.