Jodele

Hi everyone.

I guess I was lucky with my kids. I have 3 girls. they are 9, 6, and 5yrs. When my oldest dd blood work came back, I sat down with all the kids and told them what was wrong with the whole family. I told them what gluten was and what it did to there bodies. I gave my oldest the job of looking at the lables of candy to make sure that it did not contain any gluten. This year her teacher was so imprest that she could read lables better than her. I also included them in trying all the differnt mix, cookies, and cereals. I also went gluten free and that helped them to see that i could do just like they could do it. My youngest always ask "do it got gluten" or "is it glutenfree" if she was given something to eat by anyone, she suprised me. I am very proud of my kids. do not think they dont understand, they do. I told mine that gluten for us is like poisen. It might not feel sick for a few days later but it is caused by the gluten. you dont have to talk down to them. if they have any questions and you do not have the answer get on the internet with them and find the answer. included them in everything. one thing i know is if they do not like to even try new foods let them help cook what ever you are making. It realy helps. my oldest is such a pick eater. Well I hope this helps.

he will adjust. little kids are stronger than you can imagen.

Jodele

Thank you guys. My Kids love the Little enstins. They ate it this morrning and they were so happy. I think we sould all email or write and thank GM for making ceral for our kids. The more people writing in mybe they will make more cerals that are gluten free or at least keep the ones that are gluten free, gluten free. I am going to email today.

Thanks

Jodele

I am asking about the cakes and pies because of CHristmas coming up .. not that we eat like that everyday....

But I do bake cookies and eat birthday cake... he cant even have that and it was so sad on his first birthday...

But Being that I am trying to change my whole family/// we eat noodles ... soups ... breads... I just am trying to become gluten free with out so much ruining the holiday. (By making the baby sick and also being able to enjoy some of the baked goods I look forward to making.)

But I just want to be as educated about this as possible... I thank you guys... and really an thank ful for your knowledge.

I would like to be able to give him some normal things ( but gluten free ) like breads and birthday cake. And let him have the foods we eat( but gluten free) .... that 's all. It breaks the babys heart to watch us eat and want OUR food instead of his. He doenst understand that it is dangerous for him.

Is the whole family going gluten free? Once you go gluten free it gets easier. We have been gluten-free for 5 mths and It is getting easier now. My kids are young also. I have a 8, 5, and 4 yr. old and they took to the new life style very good. My youngest asked all the time now if it gluten free. My kids know why they are gluten free. Kids dont want to be sick. My middle dd she has a reaction to gluten that is different than the other two. She gets angry, depressed, and have emoitional problems. I could not believe the differnce in her after going gluten-free. She is such a lovely child now. We don't go out to eat very often. I fixed all the kids lunches for school and snacks. I am doing all the cup cakes and cookies for the christmas parties coming up next week for the girls school. My oldest is so happy now that she does not hurt anymore. she has grown 2 inches sence she gone gluten-free. If you need any more info on gluten-free please feel free and post or pm me if you what too.

Jodele

I know what you are going through. I have 3 girls that are pickie eaters. They loved their breads. I had found that Pamela'a Products are great. I just found the Baking & pancake mix is like bisquick. I made corn bread for Thanksgiving form that mix and it was very good and easy. Their bread mix is very good too tasted like whole wheat bread. I look for things that are easy, quick and it has to taste good also. I also love kinnikinnick products. They also have frozen donuts. I use there cake and pancake mixes. Pastas I use Tinkyada, it taste good and have almost the same texture of wheat pastas. I hope this help you out. Most of the time it is trial and error. I don't know where you live but we just moved to New Mexico and they have a health food store there that I fell in love with called Wild Oats. If you have a Health Food store near you and they do not have what you want just talk to the maniger. They will work with you and order almost any thing for you. I have done this a few times in Oklahoma. There is always the online stores too.

Happy shopping.

Jodele

B/c of all the reading about celiac's disease I have been doing lately, I am now beginning to wonder if it is possible I could be gluten intolerant? My mom has celiac's and her symptons are tummy related and sometimes similiar to my son's. I do not have any of those same symptons. I have horrible migraines and have them just about everyday. I have different medicines I take just to function through my days. I have been to many doctors & neurologists through the years and they all say the same thing. My tests are negative... I just have migraines. I also have bad back pain but it is mainly just on my spine.

My question:

Could migraines be a sympton of a food allergy? specifically, celiac's?

If I decide to have my son tested through enterolab, should I go ahead and have myself tested as well?

Hi rysmom

I just found out that my oldest dd is celiac this summer and I put the whole house gluten-free. I went through enterolab my self. My results were positive. I was having problems all my life with pain. I went though my whole life with a head ache. Let’s just say that I had a hot temper even when I was 3. I was very small as a child and my mom went to all kinds of Dr.s to see what was wrong with me. Finally they could not find any problems and they said that I was a SLOW grower and I would keep growing until till I was 25yrs. old. Yea right I stopped at 16 teen. I am 5" 1'. I graduated high school and weighed 80 lbs. I did not get real sick until after the birth of my 3rd dd and went down hill from then. I knew I had celiac disease when my dd was dx. I know what was wrong with me with out a doubt. If you think you have this problem go gluten free and don’t look back. I am slowly getting better and have a lot more energy. But I have damage now and working on what is wrong with my neck and back, I know that I have been starving myself for 33yrs. there is damage and drs. don’t know a lot about celiac disease. They can not comprehend the scope of celiac disease. They think it is just in the intestines and no were else in the body. If your mother has it you most likely have it. I know my mother has it and my sister too but none of them want to be tested yet. I can not make them but I keep them informed as much as I can. Sooner or later they are going to tell me to shut up. but I will tell them until they take the test from enterolab or Prometheus, I do not trust any other lab. My oldest dd was tested though Prometheus. I am going to test my other kids though enterolab because they don’t have to be on Gluten to be tested. I would not do the biopsy to confirm the lab test. The test is good enough for me. I put my oldest though the biopsy and did not find damage but they did not take enough samples and just right at the start of her small intestines. There could have been damage lower down. I sorry I don’t have very good faith in Dr.s any more. Well I hope you see that you are not alone in the presoot for the answer to all your problems. If you go gluten-free it takes time to feel better do not be disapointed if you don't feel better right away. I have more energy and I don’t have panic attacks, I can sleep at night and I have not felt depressed since I have gone gluten-free. But my pain in the neck and back have gone up. I think it will get better over time and I am in therapy now for it. I am not stopping there I am going to find out why I hurt. I was dx with arthritis in my knees at 12yrs old and that was when I stated having pains. All I can say is don’t take what the Drs. say they can not find anything wrong. Tell them there is something is wrong and if that dr. don't lesson go see a different dr. until a dr. take you seriously. I made the mistake to shrug and give up. I did not give up with my kids that why I found out that I have celiac disease. My daughter is my angel. It took 8yrs. with my oldest but they will not have the same problem as me because we caught it in time before to much damage is done. If you have any more questions please feel free and ask. I try to check the boards once a day.

Jodele

here is a link about migraines and celiac.

Open Original Shared Link

here is some drs that know celiac disease

https://www.celiac.com/cgi-bin/webc.cgi/st_...;sid=91hH9H0lEJ

Natlay, I to know what you are going through. Atlest you know what you have that did this to you. As a child I was so small and skinny. I was made fun of all the time. When I was in High school the kids would say that I had a eating disorder. When I started high school I was 70lbs and when I graduated I was 90lbs soking wet. I ate all the time but unable to gain weight. Now i have the reverce effect now. I am losing weight now and hope not to get down to what i was in high school. Do not lisson to what they say and get your self better by eating right and you will start to gain weight.

Jodele

I have been gluten free for 2 weeks and I have lost 5lbs. I can not believe it! I have been trying to lose the weight for 3 yrs. and had not lost one pound. When I was younger I could not gain weight and now after having 3 kids I could not get rid of the extra pounds. I am 5' 1" and was 140 lbs. now I am 135 cant believe it. bad thing is that I will have to go get new clothes. and I spend all our momey on food right now (3 girls eat a lot. ) But it ok maybe I will be able to get in to those smaller clothes that I packed away. When I graduated high school I weighed 85 lbs and I do not want to get that small again I would love to get to 120. I only got to go 15 lbs. to go now.

Jodele

The "where does all that food go?" issue was a big joke in my family for years, but now I think we're all having second thoughts about it!

eleep

My family said that I had a wooden leg, that where I put all the food. I would wake up in the middle of the night and my mom would make me something to eat. I was always hungry and I started school I weigh 23 lbs at age six. and I just found out that I have celiac and I am now 33yrs.

jodele

I have 3 girls they are 4, 5, and 8 years old. Melinda is my middle girl and she is the one i worrie about food. She love food and wants to eat all the time. We just started gluten-free when school started. She was upset that she ate the sack lunch and I talked to her that she could not do that again. It so hard teaching your kid to leason to teachers and do what they say and now I have to tell melinda not to leason to them now. hope I dont confuse her any. Emily my oldest is very good at asking if it is gluten-free and the funny thing is my youngest is very good to. Katie she was over at a friends house last saturday and was hungry so my friend went though her stock of food to find her something she could eat and found popcorn. Katie ask if popcorn was gluten free and my friend said yes and so katie ran around the house yelling "YEA POPCORN IS GLUTEN FREE!!! WE CAN EAT IT!!!" I thought that was so good that she knows she can not have gluten and she is only 4.

It is very trying but I think everything will turn out great. I know I am feeling better now and will only get better from here. I think I gluten my self yesterday with medication. Not feel my best right now and staying close to the bathroom. so I better get off here. and talk at ya later.

Jodele

To day was a bad day.(bad week in fact) This morning I was so tired that I did not get up in time to fix 2 lunches for my 2 older DDs , so I did it after I got back from taken them to school and took the lunches to school when I picked up my youngest from prek. The office staff said they would get it to them asap. so I went home. When I picked up Melinda and Emily from school Melinda's teacher asked if Melinda brought a lunch today and I said that I droped it off at the office I was running late today for school. I saw that melinda had her lunch bag with her so I thought she got it at lunch but she opened it and nothing had been touch and I ask her if she had lunch at all and she said they gave her a sack lunch and then the office gave her lunch bag. She ate the sack lunch not her lunch I made her. When I got home I called the school and was SO MAD!!! I said to them that I made sure everyone in the school know that my kids have this problem. This better not happen again. I am a stay at home mom and you can call me any time. Sorry for my ranting I know she will be ok but she might be sick tomorrow. Day befor yesterday she was throwing up all day and had the Ds. it was like water and she had 2 acidents with it. She had no fever. I think she got glutened the day before from playdought so no more playdough. I just got my test back from enterolab and it was positive iga 21. So I know that my younger kids have it to. We have been gluten free for 2 weeks now and I am feeling better everyday. It took my oldest dd to find out what was wrong with me. She is my angel.

Thanks for letting me rant.

Jodele

I think this somehow relates to the case that Andrea posted about, where a 15-year-old who had had cancer, had had chemo (and barely survived the chemo), and then had a relapse. His doctors insist that he must have another round of chemo; the kid says no way (with his parents' full support), he wants to try alternative treatments. The doctors are trying to take custody from the parents to FORCE the kid to have chemo. They are claiming medical neglect, I think.

It illustrates that drawing the line between parental judgment and medical judgment is indeed a very, very difficult thing--especially the way our society officially worships the medical community (whether they know what they're doing or not).

I'm sure there are many who would say that the medical community worships itself....

Oops, I guess we cross-posted!

That ok you had more info I just saw a little bit of it not the full story

I just saw in the news yesterday that a 15 teen old boy faught his parents in courts and won. He did not want chemo for his cancer. He won his case. can you believe that. I dont remember what state that was from but if a teen can refuse medical treatment there is no way to make the other boy not eat gulten. The goverment is taking parenting out of the rights of the parents. (if this makes sence.)

Jodele

my DD was just dx and she was very small at birth (5lbs 15oz.) and she was 2 weeks overdue. I know she had this problem before birth. I breast feed her. So the gulten I was eating went to her though my milk. She had bad reflux and terible pains. She had bouts of d's but I was told that she was fine and just to check her reflux form time to time. 8yrs later we find out that she has celiac and that is what was wrong in the first place. She is getting better with all her symtoms. I cant wait to see how she will grow now. She so hard to find geans that fit her. long legs and no waist or hips. She wears a 5 slims in the waist and 7 in the legs. Now I know how my mom felt with me. being on the bottle does not mean she is not reacting to the gluten in the milk she drinks. It is a hard dx for little kids. blood work might not show it and even the biopsy might not show anything. My dd did the biopsy and did not show anything but her blood work show she does. The damidge is not there yet or not where they took the biopsy. I have been gluten free for 5 days now and I am feel better than I felt in years. I am not so tired all the time. If this make her feel better and grow would that be great. I thought that my dd was small because I was small. Well she is because of me or my genes. But she can be taller than me now. My mom had me in to see so many dr. to find out why I was so small. well It took my child to find out what was wrong with me. I guess you can say she is my angel.

I hope this helps. I know how you feel but if you find out this early with her that it will be easier to teach her the right foods she can eat.

Jodele

My oldest dd is having impulse problems and being hyper. She is also crying more. We have gone gluten-free for 3 days now. Is this going to get worse? First day of school is tomorrow. She is a Straight A student and I hope this does not harm her in learning.

Jodele

My youngest DD is the same way and She move all over the place in the bed. I had her sleeping in her crib by the time she was 3 months on because she moved all the time and I was afriad that she was going to fall out of bed. my dh did not like to put her in the middle he was scared that he would squish her. But all my other kids were good. My oldest slept with me untill she was 2yrs. I know that I move alot during the night. I believe that she and I both have rls. My dh says that I kick him all the time and hit him too. When I had my babys sleeping with me I did not do this. funny is it. I would try to get him to go to sleep in his bed. I would get him a tot bed and say to him this is your big boys bed and sit by him on the floor when he is going to sleep and do not talk to him. Each night get closer to the door. It is hard at first but it will work. You need to remember he will try anything to stay up. You will have to have a system at night you will follow to a tee. He will try to talk to you, cry, get out of bed, and many other things. If it is rls there is nothing you can do for him. I think there is medication but I don't know if little kid can get the stuff. Well hope this helps some.

Jodele

Since my dh and I are both "techie dorks" - I've given much thought to the "flash keychain" so I don't have to continue to pay for medic alert. It's a flash drive that plugs into a USB port - containing all pertinent information. You can purchase them with the medical logo on it, or just have a normal one that can be accessed.

Anyhow, I like the idea.

That is a great Idea!!!

I am a computer tech and I never thought of that I have a flash keychain all ready. I could have one of those medical alert charms glued to it. I have a bad reaction to anasesia (sp). I almost died thie fist time I had surgry. I like to wearing braceletts and neckleces. but I can put that on my keyring and have it with me all the time. Thanks for that great info.

Jodele

My oldest dd had very bad reflux as baby. It started when I brought her home from the hospital and she still has it but she can handle it better now. What I did when she started to hurt was set her up and rubbed her back. My dad would walk around the block holding her straight up For hours on end . He loves his first granddaughter he would not have done this with my sister and I. Warm bath works good, she was the cleanest baby around. If she was constapated I would give her a 4oz water with 1 TBS caro syrup mix well and that helped with that. Hope this helpfull, I know how trying this is for you have a crying (if you call it that, more like gutrinching screams.) baby and you can not take away the pain for him. Go see a new doctor. They put emily on zantac for her reflux and it helped some. I am hoping that a gluten-free diet will help her now. Taking a break helps a lot. I would put DD in her crib when I could not take the crying anymore and took a five min break and stood out on the porch. Recharge my self and I could go back in and hold her some more and try to get her to feel better. I called it mom timeout. I still have it with my 3 girls and my mom still laughs at me.

good luck with your son and your ears. all you can do is love and reasure him that you are there to help. Mothers love goes a long why. More than you know.

Jodele

Thank you very much!!!! I needed the plan english form of that. Now if it was about electronics or computers I could do that with no problem. Yes I was going to go off the blood work and she is gh now or trying the hardest right now. I am getting my other 2 kids and myself tested next week hopefully. Then the whole household with be gluten-free. Why I was asking is that we are having problems with the gi dr. here. My family dr. has been trying to get the results from the gi dr. and could not get what they wanted. So I went and got it today. You would not beleave what the gi dr. sent to my family dr. It was a statement about Emily and It was about the first time they tested her for celiac and not anything about the secont blood test they did. I don't like this dr but there is only 3 ped gi dr. here in okc and they all work out of the same office. I don't know if changing dr would help. If you were wondering why I waited until this year about this result because the gi dr never told me about the first blood test and Emily was just treated with reflux. The past year she had been getting worse with the stomic pains and ds. So we went back to the gi doc and thats when she said that she had a marker for celiac and now the dr said that she is not going to dx with celiac yet and wants to see her back in 6-8 months to see if there is any change with a gh diet. That was after I said I was going to put Emily on a gluten-free diet. I wish I know this 6 yrs. ago so that emily would not have to go though all the pain and would have been growing more. She is so small for her age. She wieghs 40lb and 46in tall. Thanks again for the enlightment of the pathology report.

Jodele

OK I had to go and get Emily’s medical records today. We are having problems getting blood test done for my other two kids. Our family Dr. can not find what lab to use because the labs they use do not have the celiac panel there. So I had to call the GI office and ask them what to do. They faxed there lab test to the family dr. Still waiting on that. Anyways, I went to the family dr. to get a different lab request for my middle child for testing her thyroid because she is a big girl and my dh has low thyroid. While I was there I ask for a copy of the blood work that the gi did on Emily and the nurse said that they did not have them and they had been trying to get them. I thought this was funny because our nurse showed me what they got form them and it was a statement from the gi dr. and did not memtion the last test that she ran on Emily. I ran down town to go to the children’ s hospital to get Emily’s record. This is what I got.

In 2000 blood test

Antigliadin IgA 9.0

AntiGliadin IgG 50.2

AntiEndomys IgA Negative

AntiTissTran IGA 2.3

Total Serum IgA 0.73

In 2006 blood test

Anti-Gliadin IgG 20.7

Anti-Gliadin IgA 0.4

TTG IgA 4.3

Anti-Endomysial Positive

IgA serological markers for celiac disease detected

] Celiac disease is highly likely

Then Emily biopsy states this

The clinical impression of celiac disease and the results of the serology evaluation are noted. Two of the biopsy pieces appear well oriented and demonstrate the expected villous-to-crypt ratio and normal villous histology. One portion of the specimen consists predominantly of superficial villous structures which do not show increased intraepithelial lymphocytes. CD3 evaluation of the density of intraepithelial lymphocytes is not further contributory.

Immunohistochemical study with appropriate positive and negative controls perform:

CD3: No significant increase in intraepithelial lymphocytes, 25 or less IEL/100 epithelial cells.

If anyone knows what the biopsy means please tell me I have no clue. They took 4 biopsy also. Thanks

Jodele

Hi Nikki

Welcome to the board. Glad you found the site. I found out lots of great info here and such a great support to have with all the loving people here. My oldest dd has just been dx with glutton intolerent but I know she has celiac but her biopsy came back neg. We are going gh just after myself and the rest of the family gets a blood test done. Emily my oldest is going gluten-free today.

Emily's results of her biopsy are in and were negative but the GI said that the blood test had more antibodies than the first time she tested her. She said that she might develop Celiac in the future. She agreed with me that she could be glutton intolorent or could have celiac just did not see the damage. The GI said she will not dx her yet with celiac but agreed with me to go glutton free for now and see if Emily responds with it. Yea. I have a plan now and I can do this with her and get the rest of the family tested pronto.

I am going to talk to our family dr. today to get a referral to do a blood test for celiac for my self and my other 2 girls. I was wondering witch one would be the best to do. My oldest was tested and I don’t know witch one she got done. I am trying to be pro active now and get a little pushy but I need to know a little more about the testing. I have a copy of the test requisition form and there is 3 tests for celiac on it. Here they are.

1. Prometheus celiaPLUS

5-marker serology panel and genetics combined NOTE: if anti-human tTG IgA, anti-emdomysial IgA, and anti- gliadin IgA are negative, Prometheus CeliaGENE will automatically be performed.

2. Prometheus CeliaGENE

(Genetics only) HLA DQ2/DQ8

3. Prometheus Celiac Disease Serology

(Hu-tTG) IgA recombinant antigen, anti-endomysial IgA, anti-giladin IgA, Total serum IgA, Anti-Giladin

IgG.

Thanks of all your suport.

Jodele

He everyone.

I am going to talk to our family dr. today to get a refural to do a blood test for celiac for my self and 2 of my 3 girls. I was wondering witch one would be the best to do. My oldest was tested and i dont know witch one she got done. I am trying to be pro active now and get a little pushy but I need to know I little more about the testing. I have a copy of the test requisition form and there is 3 tests for celiac on it. here they are.

1. Prometheus celiaPLUS

5-marker serology panel and genetics combined NOTE: if anti-human tTG IgA, anti-emdomysial IgA, and anti- gliadin IgA are negative, Prometheus CeliaGENE will automatically be performed.

2. Prometheus CeliaGENE

(Genetics only) HLA DQ2/DQ8

3. Prometheus Celiac Disease Serology

(Hu-tTG) IgA recombinant antigen, anti-endomysial IgA, anti-giladin IgA, Total serum IgA, Anti-Giladin

IgG.

I think my oldest did the CeliaPlus she was positive with one of the IgA becuase they did not do the gene one. I will be getting a copy of all her test my next week. If anyone knows with test would be the best one please let me know. would be grateful. thanks again.

Jodele

He everyone.

I am going to talk to our family dr. today to get a refural to do a blood test for celiac for my self and 2 of my 3 girls. I was wondering witch one would be the best to do. My oldest was tested and i dont know witch one she got done. Thats another story. I am trying to be pro active now and get a little pushy but I need to know I little more about the testing. I have a copy of the test requisition form and there is 3 tests for celiac on it. here they are.

1. Prometheus celiaPLUS

5-marker serology panel and genetics combined NOTE: if anti-human tTG IgA, anti-emdomysial IgA, and anti- gliadin IgA are negative, Prometheus CeliaGENE will automatically be performed.

2. Prometheus CeliaGENE

(Genetics only) HLA DQ2/DQ8

3. Prometheus Celiac Disease Serology

(Hu-tTG) IgA recombinant antigen, anti-endomysial IgA, anti-giladin IgA, Total serum IgA, Anti-Giladin

IgG.

I think my oldest did the CeliaPlus she was positive with one of the IgA becuase they did not do the gene one. I will be getting a copy of all her test my next week. If anyone knows with test would be the best one please let me know. would be grateful. thanks again.

Jodele

Hi Taffy

I don't know where in TX you live but there is a gluten-free bakery in Dallas called Delicious-N-Fit a Gluten Free Bakery and here Their website with more gluten-free bakerys also Open Original Shared Link . I live in OK and would love to go and see it. It is about a 3 hr drive and with the gas prices I think it would cost a arm and leg to get there. Please tell me if you go so I can drool . I heard that it is real good stuff there. I lived in TX most of my life and know dallas very well and houston too. hope you like TX.

Jodele

Thanks for you reply and thoughts on this matter. My sister she just called her kid's Dr. and just talked to him over the phone. He jumped right on it and he had my sitter take all her kids to do the blood work pronto. He is a great Dr. I wished that I stayed with him but the drive is too far for me to take them to him. Gas prices are too much. I think I will call and try to get a hold of my kids PA and see if she will do that for me. I have an appointment for my other two kids and myself on aug. 15. I would love to just go GH right now but I want to test the whole family. I will be getting Emily's whole medical record form the GI's. I can not remember all the tests they ran on Emily the first time we saw that Dr. But I will look to see if any thing might be missing. I just so mad at the Doctors in Oklahoma. My DH almost died last year form a gallbladder. It almost took them 2 months to dx him and 5 trips to the er latter. One of the er trips just dose him up with pain killers and sent us home. By the time that it was dx his pancreas was dissolving. Luckily we caught in time and I kept asking every DR. to see if it was his gallbladder. I went thought this with my mom and it took a year and a move to NM to fix her. I just hate these dr that think they know everything and just make you feel stupid and you are right in the first place. We knew that it was the gallbladder each time and no one wanted to lesson too us. I am sorry that I am just ranting right now but I just called the GI and found out that she was not there and I would not find out about the biopsy till tomorrow even thou she said that it would be in today. but I guess that I can wait till tomorrow any way. Well thanks again for all your support. I will post Emily's results we I get them.

Jodele