momof2sn

  vanillazeis said:

Lame advertisement... lol im a nerd. i thought that was the weirdest name for a cosmetic line ever lol. I will definately see if there is a rep around here. Great idea about the name tag!!! I will definately give that a try. THANKS!!

Just wanted to add that Lame Advertisement has great products, and if there is not a rep in your area they have a web site.

My daughter was 21 mo. when diagnosed and the biopsy was done first and was negative. Her blood work was positive and so was the genetic blood work. Her diarrhea was gone within 48 hrs on the diet, we are now seeing a cosiderable difference in the size of her belly.

My opinion is if they are giving you the diagnosis without the biopsy and she is improving on the diet, don't turn back. After my daughter's blood work came back positive they wanted to repeat the biopsy, I refused, and the diagnosis was given. I just felt I couldn't put her through that again, I couldn't go through it again and why, just so the doctor could see what she missed the first time, no thanks!!

I'm sure you will see an improvement very soon. You found a great place to ask for help. Everyone here is great, it is the only way I have made it these first two months.

  Nathan said:

I forgot to add something I thought was interesting after reading "Go With Your Gut" by Karen DeFelice. In her chapter on digestion, she explains that lactase forms on the villi of the intestines. When these are damaged the body can't digest lactose like it should. Helps explain why a lot of people who are gluten intolerant or celiac can't have dairy either. You would think that the dairy problem (as long as it is not a protein issue) would clear up after going gluten-free. Perhaps other intolerances are keeping the gut from healing like it should.

Also, I read a post from sometime back criticizing Enzymedica for stating that Glutenease can help someone begin eating gluten again (implying a celiac could do it). I think I did read that type of description for the product from an online site trying to sell Glutenease but I do not believe that is the company's position at all.

I asked my doctor if I should start my daughter on enzymes, they were recommende to me and I was curious to see if that would help. Anyhow, he let me know that they would just make her body lazy.She is doing great and maybe if she was having problems I would consider them no matter what my doc had said. Just thought I'd put my two cents in!!

My daughter got her Dx on May 1st of this year, so I am new to alot of this. I was wanting to know from you other moms if you take your celiac kids to places like Chuck E Cheese, or McDonalds play land? Are they safe? I have a son that is not celiac and I feel we don't got to alot of places we used to before his sisters Dx. I just feel that there has to be gluten all over those places and didn't know if I should attempt it? Pleas Help!

  psawyer said:

I would not be worried about the caramel color. Many bouillon cubes use wheat flour (gluten) to hold the cubes together. If you can find bouillon powder there is a much higher likelihood that it will be gluten-free. We use Bovril beef bouillon powder in foil pouches; it is gluten-free.

What if an item states "natural and artificial flavor" is that anything to worry about?? I do see alot of things that contain caramel color.... like Dr. Pepper and syrup.

I'm sure it has been mentioned, but I was wanting to know if anyone knows which baby wash is gluten-free. We have been using Huggies. I don't see anything, but I thought someone mentioned there was something in it that wasn't gluten-free. I just want something I can grab at Wal-mart.

What about diapers and wipes, are their any problems with those? My daughter still seems to be fussy, so I think she is getting glutened by something.

I wear Cover Girl make-up, I heard they are gluten-free am I right?? Is ALL of the cover girl make-up gluten-free, like blush and lipstick. I use their foundation and powder too?? Just trying to make sure I have all my bases covered. I feel I can't possibly ever get ALL gluten away from her. Is it possible for her really to be fussy from just coming in contact with something that contains gluten vs. actually eating something accidentally with gluten in it? She has always been a very happy girl and was not too terribly sick before the gluten-free diet, mainly diarrhea, but never as fussy as now.

  Momma Goose said:

Just want to add HerbOX Chicken and Beef bouillon is gluten free. Use it all the time.

Could it be that they contain carmel color? Is that off limits too?

Can anyone tell me why bouillon cubes are a "no no"?

I am knew to this and have recently realized that malt is also something I need to look for ( I have been feeding my daughter rice crispies). Can anyone else give me some common ingredients that are not wheat, oats or barley that I should not give her. If a food has not contained those things I have been giving it to her. Now I know to add malt to that. Anything else??

  bnsnewman said:

I'm dealing with the school and trying to have gluten sensitivity and the resultant illness when she consumes it recognized. My daughter is in kindergarten and I just found out yesterday that she is on the list to be held back due to excessive absences. The assistant principal agreed it's got nothing to do with her academics, but solely with her absences.

She suggested we go forward with Plan 504, but at the same time, said that most of the cases that she deals with regarding 504, are for ADD, and admitted that she is not sure how to proceed with my daughters case.

As more and more children are diagnosed with Celiac and gluten sensitivity, the schools are going to have face this. Unfortunately, it looks like in a way, we are the pioneers Best of luck to you and keep us posted!

Natalie

I know here in Indiana a child can be listed as OHI. Other Health Impared. I haven't gotten that far with my celiac daughter, but my son having autism and severe asthma they have listed him that way. He has been followed by our special ed. dept since he was three and he misses so much preschool due to his asthma. He is listed as OHI instead of autistic, because his asthma causes more problems, with his education than his autism. I know they write out a IEP. Individual Education Plan that includes exceptions and goals for our son. He has sensory issues due to the autism and alot of foods, by sight or smell make him gag, they have arranged for him to sit in another area (not in the cafateria) when something is to much for him that day. They also have it written that he will be able to come in late , when needed of course, when we are up all night due to the asthma. They also have it specified that if he missed 20 days in a row, they will have a tutor for him.

I just can't imagine a school system not wanting to work with you. That is what the education system is for. They are here for our children, with there special health needs and all.

Natalie, I would press your school to not hold your child back. If you think she is educationally where she needs to be and so does the school. It is not her fault she has celiac and it is not her fault that the school hasn't taken care of their responsibility which is to accomadate your special child. We do need to be the pioneers, but the schools deal with children with all kinds of needs all of the time and there is no reason they haven't already established a plan for her. They can be sued for that, not that I am saying to do that but that is a serious issue, that is why they get state dollars!!!!! I'll get off my soapbox now. I just don't agree with a child suffering due to a school being ignorant.

Okay, I have heard that bouillon cubes are off limits, WHY?? I am knew to this. But I do not see any wheat listed?? I recently learned of malt being a hidden ingredient ( I was feeding my daughter rice crispies not knowing) Anything else hidden somewhere I should know about. I just thought I was okay by not feeding her anything containing wheat, oat or barley. Why do they try to hide things??? I am sure there is something else I am missing, because my happy little girl is nothing but a fussy butt all the time. The diarrhea is gone, but the crying is going to drive me insane!!!

See I live in "Nowheresville" and there are no Trader Joe's, Whole Foods, or Natural Market, not even anything close. I went to one pathetic market (it took me an hour to get there) well, not may options. I realize the internet is more expensive, but I have no option...

My daughter only got her Dx 2 weeks ago and I feel she is already getting tired of the snacks I have gotten for her. Our stores here have not much of a gluten-free variety. Could anyone give me some suggestions for websites to order from and maybe what snacks your kids like from those sites???

  PacerNYC said:

~Well celiac and gluten sensitivity are sometimes confused. I guess you coudl say "celiac" is the end result or manifestation of gluten sensitivity (aka intolerance), I believe the clinical def of celiac refers to villous atrophy. Most of us here on this parent's forum hope to prevent the villous atrophy from happening by catching it early.

~Gluten and wheat are different. Gluten is a protein found in wheat, but unfortunately for all of us here, gluten is also found in oats, malt, and barley, and some other grains.

Glad you are having good results. Fiddle, I had just about every form of baby carrier ever invented. I had a Maya sling, a Kelty backpack, a Baby Bjorn, I even had this Canadian thing which was like a soft backpack that could be used for younger babies (the baby faces the opposite way from the parent and rides lower than a regular frame backpack).

luckily...that phase is over anyway. Heidi

So is anything with malt flavoring in it off limits too?? I wasn't aware of malt being a "no no" I'm still learning????????????

  SunnyDyRain said:

The this is processed lunch meats, they can have fillers that have wheat. Usally if you go to the store and buy a regular fresh cut steak from the meat counter it is gluten free. I have heard though some stores add a solution to some meats to "plum them up"and you have to make sure that has no gluten.

In my diet, I concider unprocessed meats gluten free and yummy.

Thanks so much!! I was in a panick there for a while. That really helps. She has been doing well with things that have no wheat in them so that is what I am sticking too!!!

  StrongerToday said:

I just found a new Hormel lunchmeat in a brown package that lists gluten-free right on it!

Okay, I am new to all of this too!! I am a little flipped out at this moment!! I thought all meats were gluten-free. If it doesn't say gluten free should I not buy it?? What if the product does not have wheat in it, but does not list the item as "gluten free" should I not be buying them? My daughter is the only one eating gluten-free in our house and if it does not contain wheat, oats, or barley I buy it. What about items that don't contain wheat but state they are made in a plant that does?? Am I doing wrong? Her inflamation has gone way down on her intestines and no more diarrhea. She is doing great!!!

Please Help!!!

  GoofyG said:

Thanks for the reply. I know I get sick when I'm sedated. I hope she will be ok. I didn't think about her sippy cup. She is drinking out if a normal cup, but I think that day I'll bring a sippy cup.

I just wanted to say that both of my kids had endoscopy done on 3-28-07. They are 20 months and 5. Both of my kids did not have to have an IV and were just given a mask of ansthesia in the operating room, that only took a few seconds for them to be out. You may want to ask if you have that option. I know most of us don't want to have our babies poked anymore than they have to. I was able to be in there for both of my kids ( I have to tell you that that is hard, but they are my kids and I would want to be there with them. I would fine out too, if there is any blood work that needs to be done? Like allergy test or the antibody panel, or anything else that maybe your doctor suspects is going on, so it can be done while your child is out. The procedure took 5 min. for my daughter and about 2 min. for my son. They time to wake up was about 30 min. for each. They were given something to drink by the nurse. They were grumpy when they woke up, but they were eating breakfast about and hour later and then at chuckie cheese about another hour later and then ate some more. My daughter's biopsy was normal, but genetic blood work (another thing you may want to request while she is out, our ins. paid for it) and antibody panel were positive. My son's antibody panel was negative (they checked him just because of my daughter's symptoms)

My daughter had blunted villi, low iron, B-12, and folate. Inflammed intestines and chronic diarrhea. She has now been gluten-free for a week and the diarrhea was gone in 24 hours. Her tummy still looks big, but she is doing great!!!!!!!!!!

Just remember that you are doing this to help her get better and always remember that if something doesn't jive with you then trust your mommy instinct. You are the one with your baby every day not the doctor. If you don't get the answers you think you deserve, then push and if your still don't get results find another doc to work with.

Best of luck. Look to the future that your baby will soon be well!!!

  Electra said:

I think I'm going to get my daughter tested. She tested negative on the biopsy and immunities blood test, but she has a ton of Celiac symptoms, so I think it would be wise to get the genetic test. If she comes back with both of the genes, then I would KNOW she has Celiac due to symptoms, and if she had one gene I would still feel strongly about her having it. If she does not have any of the genes then I would wonder if she has something else. I think it is very wise to do the test especially if they have symptoms.

My daughter is only 21 months old and we were told we caught before the damage was in the intestine and I am not willing to wait for it. They wanted to repeat the biopsy and I said "NO"

I have also heard that the blood test for children under 5 is very unreliable.

  j_mommy said:

I was dx'd with celiac on april 1st. When I was young i was diagnosed lactose intolerant. now I am 24 and have learned how much diary is two much for me. I can drink a glass of milk a day and be ok. Anymore than that I'm on the potty! but Lactaid really helps me. I'm not sure abotu it being gluten-free though. I haven't had to take it since i've been Dx'd with celiac.

j mommy, I noticed you have had positive blood work, and waiting for an upcoming biopsy, WHY???

If you have the positive blood work what is the reason for the biopsy?

  dionnek said:

My situation is the same as j_mommy's - looking back I had symptoms all my life but my pregnancy 2 1/2 yrs ago really kicked off the worst. I was dx by blood and endoscopy, so we then had my 2 1/2 yr. old daughter genetically tested so that we would know if we had to worry about it in the future or not (she has no symptoms and is in the top percentiles for growth). She eats mostly gluten-free at home, but I don't worry about the gluten at daycare, etc. right now (until and unless she starts showing symptoms). I plan on having my second child (I'm pregnant now) genetically tested when he is born also.

If your other son tests positive, you could always just make your house gluten-free and see if they both improve - if so you have your answer (but remember then he would have to go back on a gluten challenge if you want to have the blood tests done again - genetic tests can be done any time and are so easy - just a cheek swab!). Good luck!

Our genetic testing for my daughter was paid for by our regular insurance. She was HLA-DQ8. Our ped GI told us that 40% of people with the gene never get celiac. My husband and I have not been tested but have no problems with gluten. Our son was given the antibody panel, it may be interesting to see if he has the gene too though. He had negative blood work and has no problems with gluten.

  JennyC said:

Theoretically the blood work should show up first. The tTG test looks for tTG antibodies which is indicative of an autoimmune response occurring in the body. The result of that autoimmune response is the release of chemicals from immune cells that damage the intestine. This causes the flattened villi that is observed during a positive biopsy. From what I have read here it seems that there has to be a large amount of antibody circulating in the blood for the tTG test to be positive, so realistically both tests should be positive at about the same time.

Many people have had different combinations of positive and negative results--just read the signature lines! Medical opinions also differ widely.

My daughter had negative biopsy and positive blood work. The ped GI did biopsy first and mistakingly forgot to do the blood work at the same time so a month later we had blood work and it was positive.

  Ursa Major said:

Congratulations, that's wonderful news! Have you put her on supplements for her deficiencies? It takes too long to fix those without supplements.

You can give yourself a pat on the back for doing the right thing for your daughter, you can't rely on doctors to be much help.

She is only on a multi-vitamin. Should she be on anything else?

  Amanda Thomas said:

Kaitlyn Grace started having problems also, we took her into her pedi because her hair started falling out (on top of the being tired) she was tested and put on an iron supplement, he said she was anemic. We are taking her in again next week to make sure her levels are going up.

I have noticed my daughter sleeping alot more too!! She has not even been on the diet for a week. She does take a vitamin though. Could it have to do something with carbs??

I joined this message board on the 18th of April in dispair. My daugter, 21 mo, had an endoscopy on the 28th of March with a negative biopsy. She had the genetic make-up for celiac. The doctor pointed out that her B-12, folate and iron were low. She was lactose intolerant and her intestines were inflammed. She has also had diarrhea forever. Well, I got on here and basically said "HELP" Because of all of you I was compelled to call the doctor. The next day, she called, the blood work that was ordered for July (we were on a wait and see for my baby) was never done the first time!!!!!!!!! A big OOPS on there part!! We had the blood work done last Tuesday and by Friday I had learned enough and put here on the diet. Well two days later no more diarrhea!!! No, I didn't think I could get so excited about poop!!! Anyways, doc called me yesterday morning and said her blood work was positive!!! They want to do another endoscopy, I said "No" She was shocked I had already put her on the diet and said most moms want a positive biopsy to go with all the symptoms before they try the diet. I said all of this to say "THANK YOU". If I would have not gotten so much information and encourgement from all of you, I probably would still be dealling with diarrhea and not know any different!!

Ya'll are a great group of people and should pat yourself on the backs for helping my little baby get well, for good!!!!!!!!!!!!!!!

Shealey

My daughter was a muffin addict before the diet. Does anyone have a good recipe or can recommend a muffin mix?

  Karen B. said:

The Mi Del animal cookies are good enough that I had to chase one of my co-workers away from them. She can est the cheaper regular stuff. They also work well for banana pudding cookies.

Thanks!!!!

I am just wandering if anyone has tried the Mi-Del arrow animal cookies? I went to the nearest natural food store (25 min) and they have near to nothing gluten-free. They do have these Mi-Del and want to know how they are before getting them.