B'sgirl

I grind my own flour. Rice flour tastes much better if you grind it fresh. I usually use a combination of flours but I use brown rice flour the most. I also use Jasmine and Sweet rice flours. 1/3 to 1/4 of my mixture has fresh ground millet grains as well. I have to buy my starches but I get them in bulk and store them in sealed buckets to save money. It is so much more affordable to grind your own. You can also store whole grain rice a lot longer than flour so it is good for a long term food storage as well.

I'm shocked at the prices of substitute flours. Has anyone ground your own rice to make your flour? I'm planning on experimenting since soy and most nut flours are out for us and I hate the taste of many on the rice subs. I want to try a mix of rice, coconut (for fiber and body) and maybe flax seed (for some binding/lift since we don't do eggs either). Anyone do anything like that?

We actually do not even have Celiac. Testing was negative and genetic testing showed gluten intolerance but no Celiac as well. But the insurance doesn't care. It's all the same to them. But no insurance doesn't mean we would go without monitoring anything. It was a high deductible so we planned to pay for routine care and minor problems with cash. (And honestly I wish more people would do that). I prefer it that way. My only worry with not having insurance is if something large and unpredictable were to come up. That's what insurance is supposed to be for.

Anyway, I would just say be careful how you fill out insurance applications. Be honest, but don't put every little symptom that may not be connected with the disease. I think that's what got us and now we have to go back and prove that they aren't related in order for them to even consider reducing the rate.

That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely celiac. Have headaches? Celiac. Sinus infection? Celiac again. Then they could have jacked up your rates again, where you most likely would have dropped out or they would have bilked you for even more money. Awful system.

Granted, you KNOW you have Celiac, and thus are probably taking care of yourself. But I personally would not want to go without monitoring for years at a time, not that it is in any way your fault.

My problem is not insurance denial. It's a rate up. They will not reduce the rate unless there have been no symptoms for a year. But with 3 little children it's nearly impossible to avoid accidental exposure. It's frustrating because our health is great and we hardly spend any money on health care. We applied for a $12,000 deductible plan and they still rated us up 133%. It is more than I can bring myself to pay because we just don't use that much health care.

I need to get some stool testing that reports bacteria and yeast levels and varieties. I'm going to take management of this into my own hands. What's the most cost-effective way to get this done?

The gist of this process:

1. Some food (or molecule or protein or parts thereof) gets into the blood stream. It may be that this item is supposed to get into the blood stream or it is pulled into the blood stream too early (the enzymes or bacteria have not yet fully disassembled the item) or it should never enter the blood stream.

2. The body

I've tried several times to fry cornmeal with no wheat flour mixed in. It falls apart in the fryer every time! What do I mix in with the corn meal to make my hush puppies stay together?

What kinds of challenges do your kids face with their "food allergies" and other issues? What do you do to help them feel better about it? I have a 2 1/2 year old and a 1 year old who have to be gluten/milk/soy/egg/yeast free. So far they are a little young to feel out of place but I want to know how to prepare myself. I would love to hear specific experiences. So far my son's worst experience is in family gatherings when someone has made some very attractive looking dessert. Everyone is eating it and it smells so good. He wanders around with his eager face then looks at me and says, "That'll mayka tick!" (That'll make you sick). It breaks my heart. I try to make sure he has something he likes to make up for it but it's never quite the same. My neighbor says her children keep their sandwiches hidden in their lunch bags so no one can see that it is different.

What have your children experienced and how do you respond to it? How do they handle it?

I know someone in Austria with Celiac who cooks with this. The brand name is Wiechert and the flour is called Fertig Mehl. Does anyone know of anything like it available in the U.S. or online? I just wonder if it would taste better than rice or bean flour. My friend claims it does. I'd pay good money for some if it was really free of gluten content.

Hello, about a month ago my son had blood work down that indicated he has celiac disease. He was on gluten light for a couple weeks. Recently I decided to not do the biopsy and I took him completely off gluten. He is doing much better with his eating and has so much energy now it is crazy! He has been jumping off the walls!

The one thing is that for the last couple weeks he has been very clingy. He is always wanting me to hold him, read to him, or play with him. He also wants to sit on my lap during meals. He often cries and clings to my leg asking to be picked up. I pay tons of attention to him, taking him to classes, the park, reading to him, etc. Do I know it is not b/c he is attention deprived. I have been giving him extra loving and cuddles b/c obviously he needs it. Yet I do need to go to the bathroom sometimes and cooks meals.

I guess I am just wondering if anyone eles has experienced this? How long did it last? What did you do?

Sounds like my son. I recommend reading a book called Raising Your Spirited Child by Mary Sheedy Kurcinka. It has nothing to do with Celiac but I found it to be very helpful. Even if your child doesn't fit the exact mold it is helpful. He just had a sudden influx of energy after going gluten-free and we had to find ways to manage it. Being clingy can also be a sign of overstimulation. Is your child extra sensitive to textures of food, the feel of clothing, etc? The book has advice on how to avoid emotional meltdowns and lots of other things.

1. How long does it usually take a young child to catch up to the age average for size after going gluten-free?

If growth was stunted they may never actually catch up. It is better to compare their personal growth than compare to other children.

3. I'm concerned that her blood work was negative years ago and is still negative now for celiacs. She had one gene for Celiacs. She responded well to the gluten-free diet and is still on it. I have no intention of taking her off the diet.

blood work will show up negative if there is no gluten in the diet. I don't trust the results because my son's blood work was negative but I put him on a gluten-free diet anyway and he improved a great deal. I KNOW he reacts to it so it doesn't really matter what the tests say (although his pediatrician doesn't seem to agree).

You might want to try removing other foods from her diet to see if that makes a difference with the rashes and growth. I removed milk and gluten from my son's diet and saw lots of improvement. But there were still periodic rashes and diarrhea until we pinpointed soy as another problem for him. Once we removed soy from his diet he didn't have anymore problems.

Well, I have no children, but my suggestion would be, wait until he can talk. That way he can tell you if something doesn't feel right.

I agree with this suggestion. It can be really hard to read the symptoms when they are little. If the baby is gluten sensitive feeding it to her could prevent the absorption of important nutrients and you won't realize it until the damage is already done.

I had the same concerns about having my child tested because he was so young (not even 1 1/2) when I suspected Celiac. He had many symptoms though and so I figured it wouldn't hurt to just put him on a gluten-free diet and see what happened. He improved a great deal with the diet change and I later had to eliminate milk as well. After awhile I had him tested through Enterolab which showed he was also sensitive to soy, egg, and yeast. He made the most improvement after we cut out soy and his symptoms are pretty much gone. We never did any invasive testing.

So what I would recommend for you is, (and this is just my personal opinion), just do a trial diet. It won't hurt the child (even if it's hard on the parent) and it might actually help. This is such a critical growing period and the wait to get in for testing is so long. In the meantime he could be deprived of much needed nutrition. I would try the diet and wait until he is older to do the testing if it still concerns you.

My youngest was about 4 months when we ( after our testing through ellimination) went gluten-free . she was close to weaning because she would not latch long or often , just scream and arch her back all day long. I fought hard and wont go into that but at 6 months she was nursing normal and often. her teeth are stained in the front from low enamel from gluten. That whole first year was a fight.

We had a great easy birth at home.

Gluten DOES pass through breast milk. dispite what our Gi said , sigh

I had the same experience with my daughter. She would always scream and arch her back all of the sudden and I never understood it. She quit doing when she was about 6 months old too. I can't remember when I started avoiding gluten with her so I'm not sure if there is a connection. I am still not sure if she can tolerate it or not. I just don't give it to her. The few times she's had it I think she gets diarrhea but it could have been caused by something else as well. I plan to just play it safe until she is old enough to tell me how she feels after she eats.

Just wanted to throw in my .02. Gluten DEFINITELY passes through breastmilk. We started the gluten-free diet for my older son when my younger was just a couple weeks old. I noticed the younger one (exclusively BF at the time) started having stinky orange poop - definitely not the usual yellow mustard-seed breastfed baby poop. I took glutens out of my diet - it went away. Then I purposely introduced gluten again - same reaction. Stinky, orange poop (and a lot of it). That's when I permanently went gluten free. My older son had diagnosed allergies to soy, dairy, and eggs, so I was also off those as well (turns out youngest is sensitive to those as well).

Being on a restricted diet is hard, believe me I understand! But as you know, SO worth it when you know you're giving your baby the absolute best start in life that you can give. Keep up the good work, mama!

I went on a gluten free diet while breastfeeding my second child because my first child had celiac and actually weaned himself (probably because my milk was harming him) by the time he was 4 months old. I wasn't going to take any risks w/#2. And what I learned from it is that I actually feel a lot better on a gluten-free diet. My symptoms were so mild I didn't notice until I went off and then back on gluten. So if you go gluten-free for the sake of your child, pay attention to how you feel as well. After all, the disease is genetic and it had to come from somewhere. (I still don't know if #2 is gluten-sensitive but there is some evidence indicating she is. I just keep her gluten-free to be safe and because it's easier for #1.

The gluten sensitivity test will tell you if your child is sensitive to gluten. The transglutamase test tells you if your child is absorbing food, I think. Which would you rather know more? I think if it were me I would want to know what exact thing was bothering him so I would do the gluten test. You can tell if food is being absorbed by growth and observable characteristics. I posted my son's results on my blog, if that interests you. The link is in my profile. Good luck deciding!

If you are doing a blood test or a biopsy there is no guarantee that the test will come up positive no matter how much gluten in in the diet. My son's tests came up negative but he is most definitely sensitive to gluten as well as casein and soy. We eventually had him tested through Enterolab and although he had not had milk or gluten for almost a year his test still showed a very high count of antibodies against casein and gluten--their tests are much more sensitive. Insurance doesn't cover them though.

I guess what I should really say is don't rely too much on the blood tests, especially if they come up negative. Just try removing gluten from the diet and see what happens. Who cares what the test says if your child improves with a removal of gluten from the diet? It's the child's health that is important, not on official diagnosis.

I had a similar story. I took him off gluten, he did better. After a little while he had trouble again. I took him off milk, he did better. After awhile he had trouble again. I took him off soy and he did awesome. Now he's having trouble again. You may want to consider that your child has multiple allergies, leaky gut, or gall bladder problems. I won't bore you with my story here, but if you click on my profile there is a link to my blog with the full story. I don't know if I'm allowed to post a link here so that's all I'll say.

My two-year old was in the same situation. After going gluten-free he showed a lot of improvement but still had periodic undigested diapers and rashes. We later found him to have problems with milk, soy, and possibly corn. You may have to try and eliminate more than just gluten to find out.

My two-year-old gets it as well. The only thing I have found that helps is a mixture of A&D, Mylanta (to neutralize the acid), and baby powder (just to thicken it to an easy-spread consistency). My son has problems with gluten, milk, soy, egg, and yeast. His rashes get so bad he can't sit down. You might need to rinse your child with water after a diaper change and pat it or let it air dry so all the acid gets washed off.

Is it possible to tolerate Soy Milk (Silk) and not tolerate Soybean Oil (vegetable oil)? It seems that may be the case with my toddler.

I am LDS (mormon) and our church is wonderful! They normally serve fruit, popcorn, and/or cheese. They asked me for a safe list, and they have passed it out to all the people that bring food to church. If they have a question, they call me and ask if something is safe or not. When we had our Halloween party, they made sure that EVERYTHING was safe for my kids! When we have potlucks, they make sure the main dish is safe (turkey, brisket, or whatever meat it is) and I just make sure we have a side and dessert.

I love our little church and the people who do so much for us. They really care for my kids and want them to be safe and feel normal at church. Since 2 of my kids are so young, they make sure to keep an eye on them if there is gluten around and remind the other kids not to share their food.

The nursery is run by 1 or 2 leaders, and sometimes have helpers. But the leaders are in charge of the snacks.

Swansonjohnson - If you are truly searching, go to Open Original Shared Link

I am not pushing religion on anyone, but she asked for suggestions, so I gave her one! So PLEASE don't turn this into a religion fight!

I am Mormon too! (I posted earlier on this topic) and that was the church I was referring to when I said we had stable nursery leaders. They have been really good about everything down to cross-contamination. They wipe down the table and have B sit in the same spot every time, far enough from the other kids so he doesn't steal their snacks. They watch to make sure he doesn't pick anything up off the floor. They prepare his food before touching anyone elses so that he doesn't get any kind of cross-contamination. It is so nice to be able to enjoy church without worrying about him!

My neighbor used to give her daughter peanut butter rolled in powdered sugar as a snack to try and help her gain weight. You might try something like that, if you haven't already.

I would continue to seek medical advise. Have you had him tested for food allergies? What are his symptoms?

We took him to an allergist and came up with nothing. His symptoms: doesn't sleep well, lots of large bowel movements (4 a day), often has what looks like sand in his diapers, bad diaper rash, very cranky at times, eczema, bloated belly, sometimes acts disoriented or spaces out. All those symptoms improved after going gluten-free, but weren't completely gone. Then we removed milk from his diet and he got even better. But even now he still has unexplained bouts of it. The last one happened after eating some gluten-free corn bread, and before that after eating taco soup. It could be the corn, cross-contamination, or something else. We are taking him to a naturalist this week because the medical doctors here don't seem a bit concerned that he has steadily lost weight percentile (25th to 10th in 6 months) and actually lost two pounds in three weeks last month. We are currenly collecting samples for Enterolab as well.

At my church they have the same people in every week so they all know about Barrett and his intolerances (he is 2). They keep a bag of his own snacks in the closet so I don't have to worry about bringing them. At church activities I just send his own food with him and inform the leaders. There are a few other kids with Celiac who go to my church and so we just bring our own bread for the sacrament. I wouldn't expect others to provide the food for you. I would just bring it all myself and then you know for sure that it is safe.

I can't imagine a possible connection. How and why was your two years old suspected of Celiac? If that is the case, there is no cure other than diet (at least for now).

I think you're right that if it's actually Celiac nothing but diet change will help because it's genetic. He shows all the symptoms of having Celiac but has not been diagnosed. He could just have lots of food intolerances. We took him off gluten and casein which helped a lot, but he still had trouble and we suspected corn so we removed that too. He is still healing from the corn bread muffins so I can't tell if that has helped or not. (That was two weeks ago). For all we know we are barking up the wrong tree and he has something entirely different.