momof2sn

My son and I both experience memory issues when glutened. Lots of celiacs get what they call "brain fog".

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I have heard people use that term before, but she is on a very strict gluten-free diet and her levels are always good. She has been gluten-free for over 3 yrs now!! Can some gluten still be sneaking through somehow??

Hello Everyone,

I have a five year old silly who was diagnosed at 21 months old. She has been gluten-free since the diagnosis.

My concern is she has appeared to have some difficulty remebering things. Her teacher said some days she is on it gets everything and then other days she appears to have no clue. I noticed memory issues before she started school and have never mentioned it to her teacher for example we have worked on her shapes for several years and she still can not get square and circle right. She seems to be so normal in every other way she just forgets things in a weird way.

Has anyone else experienced this with their silly, or any other learning issues??

Thanks for the help,

Shealey

If you go to GlutenFreeIndy and pose your question, there is a parent with extensive experience with 504's.

Thanks for that info. I really appreciate it.

momof2sn

Hi All,

My dd is 4 and we are having our first case conference in a couple of weeks to get prepared for kinder next year. I was wondering what particular things I should ask for.

Do most of you just have a 504 for you child??

Has anyone had luck with asking for a gluten-free lunch? Isn't the school legally responsible for providing a gluten-free lunce?

I just need to know what has worked, been essential.....etc.

Thanks,

momof2sn

Yes. What blood tests were done?

Silent Celiac is now believed to be MORE common than "classic" (i.e., symptomatic) Celiac. Presence or absence of symptoms, unfortunately, can't rule in/rule out Celiac alone.

Usually. The purpose of the biopsy is to rule in/rule out Celiac. It is recommended that multiple biopsies (4-6+) are taken from multiple locations to increase the accuracy rate, as Celiac can be a patchy disease.

The celiac genetic testing was done. His pulmonoligist and allergist ordered nearly every food and enviromental blood test as well as immune definicy. I think the GI also does a nutrition test. They took 9 tubes out of the poor guy....they couldn't do it while he was under either. The GI doc mentioned she may have to check his panel every 6 months for awhile. I am concerned about the biopsy because, my daughter the silly, her biopsy was negative!!! Her intestine was visually inflammed and no red bumps like my sons.

momof2sn

Hello All,

Everyone here has always been such a great help so I have some more questions.

My daughter is the only celiac in the family. My hubby carries the HLA-DQ8 gene, but has a negative panel test. My son who is NOT celiac had an endoscopy for EE. The esophagus was better, but the intestine had red bumps all over. She said it could be possible celiac. Well, he had a negative panel a couple of months ago. ( he was suppose to have the celiac genetic test and our lab messed up AGAIN!) She did a biopsy of the area. He has no vomitting, diarrhea or constipation. She also wants to do an endoscopy on my hubby now. He has no symptoms either and as I said a negative panel. He does have alot of mucous production during eating and has to blow his nose often. Sometimes that is followed up by sneezing. The doctor said this could be his only symptom. Any thoughts?? Can someone have celiac with no symptoms and a negative panel. Can the doc tell if is celiac with a biopsy??

I appreciate any help!!

momof2sn

I have been wondering about the enzymes and probiotics lately. We took my 7 year old to a naturopath, and he has been on some enzymes, moslty bromelein and a mixed veggie based enzyme, and acidophilus, as well as of gluten and dairy. REally improved his energy and some weight gain, no effecton ADD behavior.

I have also been giving my 3 year old the same enymes. she has been gluten free since Feb, and off dairy again for the last 6 weeks or so (when we took my son off and added enymes) she saw the Gi for the first time on Friday (who wants to put her bakc on gluten and scope her, surprise, surprise) and she had gained another 1/2 pound in the last month, which for her is great. I'm wondering if the enzymes really are helping. I"mnot sure what to do with her, she grew a bit in the beginning of gluten free, but leveled off. I"m thinking an enzyme deficiency of osme sort makes sense.

Also, The fish oil is a great help with anxiety, mood, and hormones. You need a good amount to help with the anxiety,but clinically it shows results close to zoloft in children. Two of mine have anxiety disorders. I hand it out to all my kids and myself every morning.

Patty

What dose of fish oil do you use?? Mom son would benefit from taking it. He is nearly 7.

Shealey

Holy coincidences, Batman--look what I found: Open Original Shared Link

OH MY GOSH!!!! THANK YOU!! THANK YOU!!!! THANK YOU!!!! This will give me a start. I trust doc's but yet I don't. I wanted to go into our neuro visit with some info and was wondering if celiac had anything to do with what is going on. I SOOOO appreciate this. Did I say "THANK YOU"

Shealey

Thanks for the suggestions. We'll try 1/2 the capsule, I was giving her a full one the last day or so, but she's been complaining of stomach cramps. Hard part is she's 12 and has anxiety. I can't tell if she's eaten something she shouldn't have, if it's the anxiety, or if it's hormones. We'll try the fish oil capsules as well. I'm vegetarian, but she loves her meat. She'll be fine with that.

When my daughter was first diagnosed I wanted to try digestive enzymes as well and our doc said no, because it would make the intestines lazy, basically they would become dependant on them and not do the job on their own...the intestines that is. He said just to follow the gluten free diet and the body would heal on its own.

Are the stomach cramps due to her bowel movements or the lack of??

Shealey

Hopefully, your little one is just fine, and will catch up when ready.

But my son had similar issues, and they were red flags for Asperger's (a mild form of autism) (which we didn't know at the time).

You might want to read up on it, and get her assessed if you think it's a possibility, as the earlier you get help, the better the outcome. You also might want to research vaccines, as there is a definite link there. Www.nvic.org is a good place to start.

That scares me a little because I have one already with autism. My son has PDD. But she is very different. We have talked to the doctor and she wants us to see a neurologist, just in case. She had the cord wrapped around her neck and was blue when she came out. She also has a liver disease and then celiac. It could be nothing, but my kids are anything but typical, so I think the doc is just trying to be safe!!! I just wasn't sure if anyone her had a celiac child that maybe had some issues due to celiac...or maybe I should say the damage that maybe could have been done before a gluten free diet!!

My husband and I each had a friend with CP and the arm movements she is making look a little like that, but I am sure we are looking more into it...all I know is it isn't anything a typical three year old does!!

Shealey

What exactly are you saying? How old was your daughter when reaching major milestones?

My second-youngest daughter didn't sit unassisted until she was ten months old, she never crawled (she scooted on her bum) and didn't walk until she was 20 months old. My son (he is the middle one and has two older and two younger sisters) walked at 18 months. The oldest walked when 15 1/2 months (two weeks before the next one came). Her younger sister walked when 13 months old (about average), and the youngest walked two weeks before her first birthday.

My oldest daughter said 30 words when she turned one, the next one seven words, the next two 2 words (which is average) and the last one started to speak at two months of age, said 100 words at 12 months and spoke in full sentences (I have never seen anything like it). They are all normal, intelligent people.

All I am saying is, that not every child is average. Two of my granddaughters (cousins) walked at nine and ten months, and I walked at nine months. One of my brothers (of six brothers) didn't walk until he was 24 months old.

All my kids (who are now 28, 27, 25, 22 and 16) are perfectly normal, intelligent people. The ones who seemed behind in some ways when very small all caught up soon enough.

Some kids will do things early, some will do them late, and some 'average', which falls in between. You really have to worry when you find that the child isn't progressing at all.

Yeah, She is caught up...just has some odd jerky movements with her arms when running, kicking a ball etc. Just didn't know if it was related to celiac. She walked at 14 months and rolled over at 11 months. We have always been told she has tight muscles and was in physical therapy for awhile.

Shealey

I was just wandering if anyone has a child with Celiac that has gross motor delays?? My daughter has had them since birth, she is now 3. She was late at rolling over and walking. She is now having some jerky arm movements while trying to run etc. Anyone experience anything like this??

Shealey

thanks for your input....she started soy milk about 2 weeks ago and we have seen an improvement with her nose running issue....but, i was wondering....are other "intolerances" or allergies likely to show up all the time with blood work? can they be like gluten and not always show up on a blood test?

Hi

I just wanted to say I have a book called "The Kid-Friendly ADHD & Autism Cookbook" by: Pamela J. Compart, M.D. & Dana Laake, I got mine on Amazon. I know your child is not autistic or have ADHD, but it talks about what you are asking. I have been researching some of this myself. The books tells how phenols are beneficial to the system; it is the PST deficiency that is the problem. It gives the symptoms of a phenol sensitivity.

I have wanted to have my son who has PDD, on the autism spectrum tested for gluten sensitivity, because I have heard the same thing such as your body craving the things that are causing you harm. Most Dr's do the RAST testing which is the blood test for food allergies or they do the IgE which is the fast-acting immune respone done by blood or sking testing. I think the one your are interested in is the food IgG sensitivites, this is the test related to behavioral symptoms. I would recommend getting this book, because it has tons of info as well as recipes, but it will answer all the questions you have.

If you have anything else specific you want to know PM me and I will look it up in this book for you!!

Aw... Not fair for people who are just allergic to gluten.

Yeah, I have already read How to do it, I was just wanting to know from other parents if it has been worth it for them??? Or should I not waste my time adding up all the cost??

Hi All,

Well, I put this topic here because I am sure there are alot of parents that have included their celiac kids on their taxes. This will be my first year with having celiac expenses, and I was wondering is it really worth it to deduct the cost of gluten-free food?? What about a letter from the doctor stating that your child or children are on a gluten-free diet? I read somewhere that you need a letter, but I always efile, and I do my taxes myself. Does anyone know how that works??

Thanks for the help!!!

Hey all,

I was wanting to know if anyone knows of a chex mix substitue or has a recipe. It is one of my sons favorites and would like to replace it??

What about a lactose free butter or even a low lactose butter? Anyone have any suggestions???

Thanks

I wanted to welcome you to the board!

I hope that others will share more constructive advice.

If you are looking for a good pasta replacement, check out Tinkyada pastas. Its a rice based pasta and is the best out there!

Wheat is required by law to be listed by ALL companies. Use the list posted above about companies not hiding gluten, and you'll be good to go! You won't have to worry about "code" words then---it'll be listed clearly as wheat, rye, barley, malt, or oats. Always turn over the product to the back to see if they are owned by one of the big companies listed.

Can't eat fries that were fried in the same oil....

Hope the other responses were a help . Let us know what else you need....(i.e., specific replacement for X, etc.) Please make yourself at home!

Hi Charis,

Welcome to the board!! I just want to encourage you and say that YOU CAN DO IT!!! This is one of the most overwhelming things at the beginning, but everyone here is awesome. My daughter was DX in May of this year. I remember just spending hours on this forum and asking and reading.

Take the advice... everyone here has been in your shoes and the food recommendations are awesome. You can spend hours in the health food store and not know what to buy, or spend your money on something they absolutely will not eat.

It will become second nature even though you feel that it won't for you. I have recently switched my non celiac son over too.... He has always had severe asthma, along with other health problems too. The changes are amazing for him too. I never thought that he would "go" for the diet, but he is doing great. I swear he is the pickiest eater ever and now he is doing it. He is on the autistic spectrum, so that limits what he will eat even more. Good luck and keep reading and asking!!

A few things my kids love are Ener G Tapioca Loaf, Ener G wheat free crackers (taste like saltines) you can really do alot with these, Kinnikinnick Tapioca rice bagels and english muffins, you can do alot with these too. For a quick pizza I cut up the english muffins, top with favorites and pop in the toaster oven. My kids also love the Glutino gluten-free crackers, much like a ritz. Another must have is Jo-Sef Graham crackers(I can only order these on the web) Kids love these too!!!Check out Wal-Mart alot of their foods are marked gluten-free and they have the only boxed mashed potatoes and augratin and scalloped potatoes marked gluten-free too. These make for quick sides some nights!!!

Best of luck!!! Shealey

I forgot to add that you will NOT want to add gluten later. My daughter has been accidentally glutened twice (eating out) It is one of the most horrible experiences and the guilt is aweful. You will not be able to do this on purpose to your child!! Watching them vomit, spiking fever and the crying is just terrible!! Keep him gluten-free to keep him healthy.

All Celiac experts recommend that ALL first degree relatives are tested, REGARDLESS of symptoms. Lack of symptoms does not mean "no" Celiac. Dr. Peter Green says that most Celiacs are actually silent Celiacs.

Yeah, that is what I am worried about. I don't want us to not know about his levels, because I would hate for him to be 50 and finally have symptoms and then he has really damaged his body and put himself at risk for even more problems. Would he need to see a GI or can he just go to a regular doctor?? Our ped GI recommended the gene testing and is now kind of holding up her hands and letting us figure out what to do since she only deals with kids. I don't want her to treat my husband just give us the direction we need to take next.

My daughter was diagnosed in May with Celiac Disease, she has the HLA-DQ8 and we just found out today that so does my husband. He is having no symptoms and is always the healthiest in our house. I want to know what the next step is? Does he have his levels checked?? What have you done?? Any opinions??

How old is your daughter?

My son is 4 and attends preschool. They had fairly hygienic food policies in place before we found out about his celiac. Perhaps you could discuss this with your church day care.

Here's what they do for all the children at my son's school (from babies to preschoolers)

Kids wash hands before all meals or snacks

Kids eat in designated areas, ie at tables.

After meals they do diapering or toileting, depending on the age of the children

kids wash hands

teachers or parent help washes down tables & sweeps the floor.

kids are not allowed to play until they have washed their hands post diaper or bathroom. This really keeps the contamination down. Plus it's just good policy to keep food in specific places. I don't think kids should be playing while eating for a number of reasons that I won't go into here.

Best of luck!

My daughter is 2, I stay home with her, I think I would be in the looney bin if I had to work right now. In our church, it is run by volunteers, the nursery that is, and not the same person is there every week and sometimes who I drop her with is changed by the time I pick her up. The eating area is just a table in the middle of the nursery, right there where all the toys are. I think I just need to find a new church. But what about hand sanitizer, will that do the job?

I have a few questions..... My daughter was diagnosed in May so we have the diet under control and have had a second round of blood work that came back great!! I said that because I am having a dilema with playdates and church. I have stopped going to church because I don't trust that they are doing what I am asking, but my main question is... what about situations like playdates and church nursery where the children eat and then play with the toys?? I try not to get obsessive about it, but I feel I can easily cross that line.

My daughter is the only one that is gluten free in our house, so is it really any different when she is at church or a friends house? Gluten can get stuck to our toys just as it can at a friends. Do I need to worry about it?

I think with church nursery I am more nervous because I am not there to watch her every moment. Any child can just carry an animal cracker into the play area without someone noticing. I just don't leave her anywhere now, I am just to nervous

I really would like to know what you other mothers do. I do have a medical id bracelet only for the church nursery, so they don't think I am just a ridiculous mom.

I should add that my daughter has gotten glutened here and there accidentally, but she does not have severe reactions as I have read some children here do, but none the less, I want little damage as possible.

Thanks so much for your help........... Any opinion is appreciated!!

Julie,

I was just in your position just 5 months ago. I was very anxious for my kids. I had both of my kids scoped on the same day. We had no idea of the celiac when we went in for my daughter, she was 20 months and my son was 5 1/2. The only symptom my daughter had was chronic diarrhea and large belly. I didn't sleep much the night before due to my anxiety. My kids had no clue. They still don't know what happened. They were both fussy afterwards due to the gas they gave them. Two hours later they were eating up a storm. More than they had in a while.

An encouraging note, five months from now you will be so glad you have changed your childs diet and it will come as second nature. My daughters diarrhea was gone in 48 hrs of changing her diet, and now five months into it, I am still trying new things but I pretty much know what she likes of the special foods(bread, cracker etc.) Another positive note your child is still young. My daughter has no idea her food is any different from anyone else. I try to make a replacement for our favorites here.

It will be over very quickly and your baby will be feeling better so soon. Also remember you are the mommy and follow you instincts. My daughters biopsy was negative, but blood work was positive, they wanted to repeat the biopsy, I refused and I am glad I did.

Everyone here helped me soooo much in those very early days. Their food recommendations are awesome and everyone is very helpful!!!

Good luck and let us know how it goes!!!

I thought I'd share how I plan on alerting care givers at our church's nursery.

I'm going to make a diaper bag and embroider a Med Alert that states in bright bold Red and Black

FOOD ALLERGY (Might get an embroidery Medical Alert Symbol $8 to by the design)

NO GLUTEN

NO WHEAT

NO BARLEY

NO RYE

NO OATS

I never leave any message on my children with just the word gluten, you don't know how many times someone has said "oh, poor thing is diabetic" or "I try not to eat too much sugar either it makes me sick".

We can't afford mistakes.

I also order things from cafepress.com. My older child is out growing his first set of Silly Yak Ts, so I just ordered him new ones. I ordered one for the baby that is just like above, nothing cute or fancy.

The baby may not stay in the nursery once he begins to crawl, I can't isolate him away from other crawler, after speaking to the director, the don't get that a child with wheat or oat proteins on their hands transfering it to a toy that my child then touches and then puts his fingers in his mouth is enough to make him sick. Unfortunately, my baby is a 4 finger sucker and will not take to a pacifier. A paci would make it a bit easier b/c he would not likely put anything in his mouth w the paci in it. And the nursery serves Cheerios and Goldfish.

I'm glad you brought that up, because I am a nervous wreck anymore when I go to church. I know people are hearing me when I tell them what she can't have and pack her her own snacks, but I still freak out. Our nursery is only one room. Honestly how can they keep a two year old away from the other kids snacks and I'm sure they don't wash the other kids hands after they have their snack. There has to be gluten everywhere. Should I be freaking out? I am new to this. Our kitchen at home is shared so maybe she gets more gluten there? I just feel the spontinaity(did I spell that right??) is gone from our life. I will never be able to relax again!!!!!!!!!!!!!!

What are the silly yak t's?

I'm brand new here, but our GI said doing a biopsy is like "taking a cup of water from the ocean". You go in there blindly and take the sample and you may or may not end up with a sample from a damaged area. He seems to be the opposite of your doctor - he thinks clinical response to a gluten-free diet is good enough evidence that my son should remain off of gluten.

Where do you live? Maybe someone here could recommend a good doctor in your area. My daughter had a negative biopsy, but positive blood work for the gene and high levels, so we were given the diagnosis. They wanted to repeat the biopsy and we refused. If you have some time to wait as you said, then use any resource you can to find a doctor who will give you the diagnosis without the biopsy.

Well, we went to Chuck E. Cheese on Saturday to meet some family. My little girl, the most sensitive Celiac, still ended up getting sick despite hand washing. I probably should have washed her hands several times while we were there, but I only washed them when we were heading home. The next day she had a stomache and her head hurt. I knew it was risky (we didn't eat anything there, not even drinks) but she wanted to see her little cousins so bad.

It is a really tough call, especially for the sensitive kiddos. But on the other hand, you also still want them to be able to participate in activities with their friends and family. I think I'll still go to these places (although we won't make a habit of it) and I'll be more vigilant with the hand washing next time.

Thanks everyone for your help!!! I feel kids have to live too, but then I am not sure how much is to much. I am lucky that my daughter is not too sensitive, or maybe I haven't figured out when she is being glutened. I just feel bad for one having celiac and one not, I guess they both have to make sacrifices for each other!!