RobynJ

Thanks. I think I am going to try and steer towards things with just one or two families. It is easier to control the food. Maybe we can try a splash pad or something. I think being pregnant tired and stressed makes it worse. We do go out- just not to the big group things. We haven't been to a birthday party since September. They are just too much for me.

Thank you for the support. I think I just don't have time to be super active in group right now. I just need to focus on my family. My true friends will have to understand that.

My almost 4 yr. old daughter has been dropping off the weight charts since 9 mos. old. She is only 26 1/2 lbs. & has quite a few symptoms of Celiac.

*tooth enamel loss

*unexplained anemia

*diarrhea/loose stools

*distended belly

*failure to thrive/low weight/not gaining

Among others...

We had her tested for Celiac in '08 & was neg. We had her retested recently & her ped said that the tests came back fine except for the IGG gliadin was high. But then she said she was fine, not celiac.

So, of course, I came home & looked it up & find out that if that test was high than she has Celiac.

Now I'm confused. We have HMO & seriously, this ped drives me insane.

Does anyone know anything about this? Would you consider going gluten free? Should we get a specialist involved (if she'll give us a referall)? Any ideas?

Thanks!!!

Jenn

You might want to have her get a RAST (blood allergy test). In addition to gluten my son was also allergic to Eggs. You could do the test and see if an intolerance to gluten appears. You could always try gluten free for a month and see if it helps. My son gained 4 lbs the first month and his behavior completely changed. Even if she is neg for celiac it doesn't mean she doesn't have an intolerance. At least that is my understanding.

So I have been a part of this mom's group since my son was little (before we found out about the celiac and other allergies). At first they were not very understanding about my son's celiac, but lately they have been trying. One of the mom's left open a container of goldfish crackers. I have talked to my almost three year old about not eating anything without asking mommy- sometimes I think he sees everyone else eat them and so he wants too. He got to a cracker before I could stop him. So my questions are:

1. How do you deal with playgroups? Do you only attend events where there will be NO food? Did you have a trick to keep your young child from getting into stuff they shouldn't? Should I just leave the group and only do play dates with individuals so there is more control over the food?

2. We have found if we give my son charcoal (at the instruction of his NMD) it takes away most of the symptoms. We usually have to mix the charcoal into ice cream or juice to get him to eat it.... but that is almost rewarding the behavior.... Should I wait on the charcoal to help him make the connection that these food will really make him sick? I know I must sound like a horrible mother. I don't want him to hurt or be sick- but those stupid crackers are everywhere.

Sorry- I guess I am just pregnant and upset. Just need opinions form people who understand what it is like and maybe have some experience.

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Do you think this will work with a mix like Pamela's or Bob's Red Mill?

I know they are not exactly known for being gluten-free friendly. Do you think I would be okay just getting like the grilled salmon? Any other suggestions?

I will try CC first- since no elimination will diet will work without fixing any CC issues. Thanks... I do need to check the lotions and the shampoos in the house. I checked his- but maybe he is getting off one of us.

Thanks

My son has been gluten-free for about 2.5 months. After going gluten-free we saw improvements in the size and the form of his stools after the first couple of days. He started to have growth spurts like crazy and his temperament improved dramatically.

On Halloween my cousin made him cupcakes (gluten-free), but some residual flour in her sugar made him sick. The next day he told me his stomach hurt and acted like he was getting a cold. He was lethargic and aggressive. He then started with big, muddy stools like he had before. The last couple of weeks his morning poops only are watery. This is the only symptom that has continued. I called the NMD she suggested charcoal- I did that. It didn't really help.

I have been trying to be extra CC aware (except his preschool let him play with playdough yesterday ). Is ongoing diarrhea like this normal? Or should I be worried there is something else going on?

This might not be an option for you, but I decided to offer to cook the entire thing. I am making everything gluten free, egg free, carrot free, dairy free (my son has multiple food issues). I was concerned about CC from the kitchen or serving utensils. My family thinks I am over the top too- so I figured this was the best way.

I am sure you have talked to your mom about this- but make sure the turkey is gluten-free. Depending where she shops a lot of the turkeys will have broth injected in them that could contain gluten.

If you have a Costco near you they have little precooked turkey breasts. You could bring one of those some of you own potatoes, and a desert treat for your little one. Just keep her on her own food, but make it Thanksgiving stuff. Tell you mom ahead of time. With my family who thinks I am over the top (even after he got sick from a tiny amount) I just tell them- "Yes, I am over the top, crazy, extremist. But I am a mom, that is my job, right? "

Reactions differ with each individual. But generally speaking, the reaction time doesn't differ all that much in regards to the individual. You've seen reactions before. Is this "normal" for him?

My daughter is off for about 3 days after an exposure (small CC issues last about 6-8 hours). The worst is the first 24 hours. I do give her a probiotics supplement and go to a 100% no chance for accidental gluten type of diet (that means no eating out, no pre-packaged gluten-free products....just meat, veggies, fruits and things I've baked/cooked myself from scratch).

This is the first time he has gotten sick. So I don't know if it is normal or not. He still has loose stools. He is on probiotics- so maybe I will call the naturopath and see if it is okay if I up the dose or if she has something else that helps.

All that and more ... more being learn and move on!

It is so easy to beat ourselves up over this when really S**t Happens ...

At one point I obsessed over finding the offending cup-cake/CC etc. but really it's only useful as a learning experience and what you can avoid in the future.

Sometimes you will be quite certain but mostly you have multiple possibilities ... and often it might be a random event you didn't even notice... like a relative or friend sitting on the furniture with a bread crumb on their clothes...

Many of these are so unlikely they don't happen but they are also very common so once in a while a really unlikely set of events conspires and ... poop happens.

As a parent we feel a natural guilt that something happened we think we should have controlled but the truth is we can't control everything for our children, we can't even control it for ourselves.

HUGS are the best remedy ... depending on age then immodium (loperamide) can stop the poop and also help the spasms ... and purely theoretically and in my experience also help with the neurological effects such as mood.

You can search this forum for 'brain fog' and 'exorphin' if you wish to explore this side.

Loperamide hydrochloride is not recommended in infants below 24 months of age.

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He is over 2 so I will look this up! Thanks for the advice. I do feel bad- but I guess you are right- there is no way for me to protect him from everything. Thank you again.

My dd is now 5, and it has gotten easier in that she knows waht she can anc can't have, and we have very supportive friends, for the most part, but I do remember one playdate event that I spent diving on the floor after a trail of goldfish before she picked them up. It was kind of a nightmare. I think I did limit some groups contacts. I always took our own food, and if it was at our house, I provided the snacks or kept it gluten free--encouraging fruit and stuff.

This is how this group usually runs. That is why I was nervous about taking him.

while no one really understands, especially in the beginning, most people I have met, when it is explained to them are really great. My son's cub scout den has agreed to stick to gluten free snacks, and we take turns bringing them--it really makes him happy to be able to eat snack there. I wouldn't give up on people until you have a chance to explain it to them. Try talking about how hard it is for you to take care of him, rather than how they dont' understand. usually feelings can be understood.

As kids get older, more kids will have more different health issues, and more parents will understand this better. out of the play group arena, my 3 gluten free kids are all well accomodated. Even in a snack line situation are orchestra rehearsal break, the gluten free food are at the beginning, and my son gets to go through first before it gets contaminated.

As far as a gluten free home, it was easier for us with so many off, and my kids ( even my youngest by age 3-4) knew what she couldn't eat outside, and always asked. Issue was for trick-or-treating teaching them not to tell each person that they couldn't eat that because it had gluten, but just take the candy, say thank you, and we'll trade out later.

Hope it works out quickly, hang in there

Patty

Thanks I appreciate it. I think I feel more comfortable about the whole thing now. I think I was just overwhelmed the day I first posted this.

Our hosted events are always gluten-free --- I agree that our children need to learn what's okay and what's not, but in their own home, they should not be worrying about cross contamination of sticky cheerio hands on their toys. IMHO, people are so reluctant to host that you should be good with a "when we have playground here, it's no food" or only the food you provide.

But my real question is why no ice cream? Lots and lots of ice cream is gluten-free....

He is lactose intolerant too.

Okay. I just we will just have to keep an eye out and wait it out then. Thanks!

My cousin made gluten free cupcakes for him on Halloween. The next day he was sick. I think residue flour in her sugar or in her flour sifter is what made him sick. Last Sunday he seemed aggressive and a little sick. Monday he told me his tummy hurt and seemed really off. He still isn't himself and his bloated tummy is back. That was Saturday and he is still having watery stools.

So my question- how long does a reaction from being glutened usually last? How can I tell if he is getting sick from something else or if this is one long reaction? Is there anything I can do to help ease the symptoms (beyond making sure he gets enough water and no more gluten)? I have been going through his food and I don't see anything that should be causing a problem- unless it is CC or he is getting something I don't know about...

Sorry if this is a dumb or unanswerable question we are still pretty new at this...

I am new to all this- but if you had a note from your GI, you asked her not to- as her mother, and she obviously still does not understand that she is putting your child at risk of getting sick. I would go to the principal. I think the teacher needs to understand that this is not you trying to deny your daughter the opportunity - but you are trying to keep her healthy.

I did have them over and I asked them to keep it gluten free. My sister just moved in with us for a few months and so I don't think we will be able to have people over as much since she works different hours.

Okay. Thanks.

I thought I had replied again on Sunday night but for whatever reason it didn't post and I have really long work days on Monday and Tuesday.

I sent a message to the assistant organizers and said that I was fine handling the money and stuff, but I didn't see us doing more with the group until I felt a little more confident about keeping him safe at meetups and he had a chance to heal. I said that if they needed more than just taking care of the business stuff it would be better for me to resign. One of the moms (she is one of the vegans) posted back that they should have come to me to to see what they could do for me. She offered to have an Elias friendly playdate. I just need to send her a list of safe foods for him. So we will see. They usually are pretty suportive... I do think maybe they didn't know how to respond or how hard things have been. I mean in their eyes "it is only a food allergy" I think some of them are starting to get it.

I think I do need to re-examine my relationships.

I think I need to focus my life around those "hurricane friends." I don't expect every place we go to be rearranged for him. I do need friends that will be supportive of our lifestyle and keeping Elias gluten free.

I am so grateful for this board. I really appreciate all the replies. It is nice to have someplace were people understand and won't tell me that "it is only a food allergy," "he will probably grown out of it since he is so young," or that "you know a little bit here and there won't hurt him."

The explanations help so I think I will be better able to talk to them about it. I feel a lot better about things now. I was in a pretty dark place for a couple of days... but I think I am okay now. It is just so nice to know I am not alone.

He is only two so he can't really say no on his own yet- he is still learning about what foods will make his tummy yucky. But I am hoping soon he will be able to say no to things.

Thank you again for everything. I don't know what I would have done in the last few weeks without this board!

I saw a halloween candy list that showed which candies were free of which allergens, is there is a list of foods that are free of the top 8? My son in addition to gluten, is extremely reactive to eggs, and has lactose intolerance. He showed a moderate reaction to corn- so he should really be off that too.

Is there a list like this for foods that naturally don't have the top 8 allergens in them?

I have been the organizer of a meetup group for moms for about a year. We are a little outside the norms (a lot of us cloth diaper and babywear)- so we have a group where we can get together and give each other advice. Most the meetups are in homes and people bring snacks and the kids help themselves and carry the food around the houses for the most part. Other than finding popcorn all over my house after having people over- I didn't have a huge problem until we realized my son's gluten and egg allergies.

I have been racking my brain of how I could still do these types of meetups. We can still go to the zoo and parks with them- but I can't see how I could go to a regular get together without hovering over my two year old the entire time. Even if I brought him his own food- someone puts a cookie down- and we are sick again.

I am also a little disappointed with how little they have supported us in this. We have vegans- and I always made sure we had a vegan dish for them. I always made sure to offer the vegan stuff when their kids came to the table. When people had their babies or went to the hospital- the group sent food so they wouldn't have to cook. Elias was in the hospital for three days- nothing- no one even called. In fact one of them jokingly scolded me because I haven't been in touch. I don't expect them to make every outing gluten free, egg free. But we went to a festival today and one of the moms brought over ice cream for everyone but Elias. I am grateful she didn't offer some to Elias- because he couldn't have it anyway (he is also lactose intolerant) but they ate them right in front of him. I had brought some fruit leathers and gave him one of those.

I don't know. Part of me says I am way, way overeacting. I don't expect them to change their lives just because ours has... But part of me is resentful that they can go and buy some ice cream for their kid, that they can do the frosting decoration craft with their kids, that they can just be normal when we can't.

I guess I just feel that if he was allergic to peanuts- it would go without question- they wouldn't serve pb&j. Am I just being really selfish? Will these feeling pass? Do you have any ideas to make it work with the meetups?

I am sorry if it sounds like I am just having a big pitty party. I just don't know who else to talk to. I just feel like no one understands.

Here's a link to a book on Google Books that seems to say - yes, any food causing an intolerance can cause withdrawals. It gives a detailed description of possible symptoms and the timeline.

Just FYI, I have never heard of this phenomenon myself. My spouse had withdrawal symptoms from casein, but not gluten or eggs.

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if the link fails, the title of the book is Food allergy and intolerance By Jonathan Brostoff, Stephen J. Challacombe

Published in 2002. It looks like a really interesting book.

'

Thanks!

My son (2) just got his IgG allergy test back. He extremely reactive to eggs. We have removed them from his diet. This was weds night. Today he is showing a lot of aggressive behavior that subsided once we went gluten free. He had withdrawals from the gluten. Could he go through withdrawals from the eggs?

Thanks in advance.

I agree with what everyone else has already said... casein is a milk protein and lactase is an enzyme that breaks down lactose. And you need to ingest lactose in order to keep producing the lactase enzymes to break down the lactose, so your son should avoid casein but not lactose

Okay. Thanks this all helps. I feel like an idiot and I should know this stuff. But we went from no known allergies to a whole bunch in like a month and a half so my brain is a little overloaded with all of this.

Now he tolerates goat milk and goat cheese. Do you think that is enough lactase to keep him going? Could we do just those two and some m&ms (while we are potty training) then in a few months try regular milk and cheese again?

One thing that is weird we have always noticed a bigger reaction from hard cheeses and yogurt than from regular milk.

Please be aware, some individuals go through gluten withdrawal. When you said he is "addicted" to bread, he really could be addicted. There are medical articles that explain gluten has an opiate effect in some individuals. I don't have much spare time right now to find the links. If you need help getting information, some one here at this site will help.

My son did have gluten withdrawls. They were really intense. If he hadn't been so sick- I think weaning him off would be a better way to go. I check some of the sites for autism for more information.

We are thinking of having another child and we talked about this. I am not saying this is "right" for everyone- but our thinking is even with all of my ds allergy and health problems we are still grateful he is our little boy. I think for us saying we don't want to have any more allergies or related health problems is like saying it would be better for that kid not to live than have to deal with this.

I guess I don't think that when my son is older he would say that he would have rather not lived than have had to deal with his allergies. Does that make sense?

Also, because of my son's issues I will know what to look for in future children so hopefully we will be able to catch any intolerance or celiac sooner.

I found some great recipies including one in Wheat Free, Gluten Free Cookbook for Kids and Busy Adults (sarros). They are a little sticky and warm up better in the toaster oven- but my 2.5 year old loves them

It uses Honey, water, olive oil, puffed rice cereal, pepper, salt, and little paprika for the coating. They look a lot like regular nuggets with the thicker bumpy texture.

Good luck!

I also tried these Open Original Shared Link but they didn't have enough breading to fool him.