Help

[Celena]

Hey there all, I am new to the forum and really need help figuring out my DDs symptoms.

She is two and a half and has had increasing difficulty health-wise.

-She has had eczema since birth

-Chronic bad asthma type cough since before Christmas (this just resolved upon doing diet revision...she is now gluten, dairy, and egg free)

-Recurring infections (various)

-Behaviour difficulties (off and on hyperactivity and very moody and whiny almost all the time)

-Serious flushing of cheeks (they get VERY bright red and HOT) off and on since...who knows. we began to become concerned about it in Jan but she has had it for longer and we just thought it was due to teething. but she has had all her teeth for awhile now.

-She complains of being sick and hurting but because of her age, we have had trouble pinpointing where she feels unwell.

-Also, she has always had quite soft and quick bowel movements.

Our Dr says 'she'll grow out of it'. My husband's gram has celiac disease and his mom has Crohn's. I think he might have had undiagnosed celiac disease or gluten intolerance because since we have all been gluten-free (for about two weeks) his IBS type symptoms have cleared up.

So, since going gluten, dairy, and egg free, my daughter seems much better. cough is gone, behaviour is somewhat better, red cheeks were better (or so i thought) but have been bad in the afternoon for the last 2 days. bowel movements have firmed up. she is stll complaining and whining lots though. it is so hard to tell if it is just a phase or something is really wrong.

Do you all think that her symptoms sound like they could be from gluten? if so...why havent they cleared up fully on gluten-free? Anyone think it is worth it to spend the $ to get her a stool test from enterolab?

Do symptoms come and go as clearing occurs? I really thought we had solved the problem because she didnt have super red cheeks for almost a week...now it looks like they are as bad as ever...and her moods are unbearabley the same.

Any advice anyone has would be greatly appreciated

[tom]

Our Dr says 'she'll grow out of it'.

My husband's gram has celiac disease and his mom has Crohn's. I think he might have had undiagnosed celiac disease or gluten intolerance because since we have all been gluten-free (for about two weeks) his IBS type symptoms have cleared up.

Do you all think that her symptoms sound like they could be from gluten? if so...why havent they cleared up fully on gluten-free?

Doesn't appear the relatives "grew out of it", if hers is gluten-related. W/ progress on the diet, it sure seems a reasonable working hypothesis.

I have no knowledge of the cheek symptom, but the rest could easily be a gluten-intolerance or celiac.

The relapse in some symptoms may be only temporary - caused by cross-contamination or sneaky hidden gluten. Were any seemingly innocuous changes made around then? I have no kids and no specific valid ideas but do any baby powders say starch is an ingred? I'm more trying to get an example of somewhere u wouldn't think to verify, as opposed to an actual possible culprit.

I'm totally ignorant on the variety of substances a 2 1/2 yr old may be exposed to.

I'm sure other parents will soon chime in.

[Celena]

Thanks for the feedback.

At first I thought that I was ensuring DD had absolutely no gluten but after reading your comments i am thinking that i need to learn more about which products to be buying.

It is very tough right now because not only do i need to find gluten-free food but also dairy, corn, and egg free and low salicylate too. there arent many foods left that she can eat. rice crackers are a major staple for her.

i read ingredients on everything i buy. but i have a question for everyone. if it doesnt specifically say gluten-free on the label but does not contain any gluten products on the ingredient list is it safe? in particular does anyone know anything about Christie rice crackers. I phoned them to check and the person i spoke with assured me that if there was gluten contamination or exposure to the product it would say on the label.....hmmmmm...what do you think? does it sound safe?

her symptoms are stable right now....no major episodes except being completely miserable almost all the time. way worse right now then b4 the diet changes she is barely eating anything tho (even tho she has always been such a good eater) and that would make me moody as well. we are trying to ride it out and find things she can eat but it is hard. anyone have any suggestions?

have other people experienced mood changes with going gluten-free? how long before i can expect things to settle down?

Thanks. and please everyone. any feedback or suggestions would be very appreciated

Celena

[Jodele]

Hi Celena

How long have you had her on the new diet? depending on the person it will take time to see a lot of differences. could take up to 3 months or longer is some people. I could see a difference in about 5 weeks. With my middle dd I saw her behavor was in proving day after day. With my oldest it took about a month befor all her stomic aches were gone but her reflux was gone within 2 weeks. my youngest is still not as well as my other 2. I am taking her off of all dairy now to see if that is her problem also. seems to be working. dont give up it is hard at first but it does get better. Another thing do you have any animals? if so does she play around the animals food? Most dog and cat food have gluten in it. I had a hard time with my youngest to help feed the cats and dogs. Now she knows that can make her sick. well hope this helps your spirts. It is a slow process. It will get better. fresh fruits and vegtibles great to have for them to snack on.

Jodele

[shayesmom]

Do you all think that her symptoms sound like they could be from gluten? if so...why havent they cleared up fully on gluten-free? Anyone think it is worth it to spend the $ to get her a stool test from enterolab?

Do symptoms come and go as clearing occurs? I really thought we had solved the problem because she didnt have super red cheeks for almost a week...now it looks like they are as bad as ever...and her moods are unbearabley the same.

Any advice anyone has would be greatly appreciated

My dd has problems with gluten, dairy, soy, eggs, food colorings and artificial sweeteners. It took us a LONG time to figure all of this out and keeping a food journal definitely helped.

I can say that we did notice changes in reactions (as well as varying reactions to increasingly miniscule amounts of these foods). After 2 weeks gluten-free, dd began having extreme reactions to very tiny amounts of gluten (from cross-contamination). I would highly suggest that you revisit the labels on what you are buying to be sure no trace ingredients could be present.

I'd also suggest that you watch soy for a while. It's very common for dairy, gluten and soy intolerances to present together. Also, beware of any imitation cheeses. Some contain casein while others may be brushed with egg whites. If your dd can tolerate nuts....there are recipes for cashew cheese out there that are very good and make a good substitute.

Obviously, there can be other food intolerances at work. Try to stay clear of the top 8 allergens for a week to see where you stand. If that doesn't work, look at corn, potatoes and tomatoes. All three can be behind these symptoms. Also try sticking with organic, whole foods as much as possible. And citrus fruits as well as refined sugar have a tendency to exacerbate food reactions. If you are in need of orange juice, stick to fresh-squeezed, not store-bought. Substitute agave nectar, stevia, raw honey or even pure maple syrup in place of sugar as sugar will weaken the immune system. With allergies, it's never a good thing to weaken immune response.

HTH. And I hope that you find a way to get this working for you. I know it can be tricky....but it really can work wonders. If you have questions, feel free to PM me.

[gfgypsyqueen]

Hi, Just wanted to chime in that my 2 1/2 yr old is dairy free and when we make a mistake the eczama comes right back along with wild behavior. She doesn't whine much, but does not listen and does not settle. So it is an exhausting 4 days for us, We found that after four days the eczema goes away and she starts to get back to normal. BTW it took us about a year before a dr could be forced to test her for Celiacs. Right now she is not gluten-free.

I have Celiacs and the moods strike hard when I get gluten. It is terrible for about a week.

What helped me to get started was to keep a food diary - foods eaten and reactions. Also, take a permanent marker to every product in your house and mark it gluten-free for your spouse and mark a code for your child. We have three people with four food allergies right now so I know it gets hard to manage, but the marker routine helps. Also, check the crayons, glue, play dough (not gluten-free), basically anything the child can get into. My two yr old eventually mouths everything!

Have you thought about getting an allergist to test for food allergies? Eggs is the one I would be concerned about. Dairy can be an allergy or an intolerance and they both can be pretty severe for reactions. With food allergies, get eductaed about about

epi-pens

[Jodele]

I thought of other things that have gluten in them and we looked over it. Playdo, stickers, some art suplies, and body products and makeup you use. (yes you use because we love to kiss our kids and give them hugs all day long.) also did you get new cookware or are you using your old stuff to cook with? if it is not stained or scrached it should be ok. wooden spoons and plastic ware needs to be tossed out and get new. there are some candies that have cc isuse. dums dums are on a dedicated line and are safe. we love to have those around for those sweet tooth fixes. I reconmend getting gluten free for dummies it is a great book for begainers. It will give you a lot of info. it save me quite a few times.

Jodele

[Celena]

Hi Celena

How long have you had her on the new diet? depending on the person it will take time to see a lot of differences. could take up to 3 months or longer is some people. I could see a difference in about 5 weeks. With my middle dd I saw her behavor was in proving day after day. With my oldest it took about a month befor all her stomic aches were gone but her reflux was gone within 2 weeks. my youngest is still not as well as my other 2. I am taking her off of all dairy now to see if that is her problem also. seems to be working.

Jodele

Hey, thanks for the feedback. The whole family has been on an EXTREME elimination diet for just over 2 weeks now (wow...it seems like 2 months). by extreme i mean: gluten-free, dairy free, egg free, corn free, soy free, low salicylate, low amine, and low glutamate. so really dd (2.5 yr) is only eating rice products, pears, golden delicious apples, and the odd bit of veg that i can get into her.

i am seeing sooooooo much progress in her behaviour in the last few days. she is used to the new foods now and whining, tantrum, agressive, and other distressing behaviour is now down to a minimum. and her cheeks look so good--barely red at all. SO EXCITING to have her feeling better in so many ways!

Problem though: she is WORSE in some ways. like worse than b4 going gluten-free. i am very worried because her bowel movements have not normalized at all. in fact they are WAY worse than prior to the elimination diet

she is having increasing D (very watery) and mucus in her stool. plus she is complaining of back and tummy aches. clearly something inside is hurting. Worse yet, my other dd (14mo), near as I can tell, is showing the same symptoms almost exactly.

I am quite worried because older dd is improving in so many ways and i dont want to take her off this diet but something is clearly wrong....do you all think this is a normal part of adjusting to the diet? i figured it would take a while for symptoms to improve but i didnt expect her to get such extreme D and mucus and such.....she never had those problems b4 the diet.

i am starting to think the diet is hurting her. i am very confused. anyone have any thoughts??

Thanks so much,

Celena

[Celena]

My dd has problems with gluten, dairy, soy, eggs, food colorings and artificial sweeteners. It took us a LONG time to figure all of this out and keeping a food journal definitely helped.

I can say that we did notice changes in reactions (as well as varying reactions to increasingly miniscule amounts of these foods). After 2 weeks gluten-free, dd began having extreme reactions to very tiny amounts of gluten (from cross-contamination).

I'd also suggest that you watch soy for a while. It's very common for dairy, gluten and soy intolerances to present together.

Obviously, there can be other food intolerances at work. Try to stay clear of the top 8 allergens for a week to see where you stand. If that doesn't work, look at corn, potatoes and tomatoes. All three can be behind these symptoms.

Hi,

It sounds like ur dd has to avoid all the things that mine is right now. i am hoping we can expand in the future. we are keeping a journal...without that we would be totally lost.

I noticed that too about the reactions to small amounts of foods that b4 i never noticed a reaction to. I think she might me salicylate sensitive too because her cheeks get red on the days she eats more fruit. or perhaps she just has a problem w pears...??? i though pears were one of the few safe foods but she ate apples instead of pears yday and her cheeks looked so clear. we went out to eat the other day (i know...big mistake) and dd had a mushroom swiss baked potato, some chicken, and a part of a slice of bacon. by the time we were done eating, one of her cheeks was blotchy and red. very quick reaction and to what i am not sure (who knows what all is in it when you dont make it yourself). she has never had a reaction like that b4.

Thanks...i hadnt heard that potatoes could be a problem. maybe it was the potatoe that gave her the blotches...? what kinds of symptoms do they cause? i am beginning to think that no food is guaranteed safe

Thanks again for the feedback,

Celena

[Celena]

Hi, Just wanted to chime in that my 2 1/2 yr old is dairy free and when we make a mistake the eczama comes right back along with wild behavior. She doesn't whine much, but does not listen and does not settle. So it is an exhausting 4 days for us, We found that after four days the eczema goes away and she starts to get back to normal.

I have Celiacs and the moods strike hard when I get gluten. It is terrible for about a week.

Also, take a permanent marker to every product in your house and mark it gluten-free for your spouse and mark a code for your child.

Have you thought about getting an allergist to test for food allergies?

Hi, thanks for the info. ur dd sounds a lot like mine was b4 the elimination. when i didnt know it was food related i never could understand why she was so crazy sometimes and so normal other times. she has been 'normal' now for about 3 days and i am praying we have figured it out and mr hyde doesnt come back. YAY --my happy child is back! except for the stomach pains and D everything is so great. it is so STRESSFUL to have a miserable child

so your dd seems to do well with gluten then? how much gluten do u need to have b4 u notice a mood change? miniscule amts from cross-contamination or.....?

Good tip on the marker thing. My dh has already given dd the rice crackers with the corn a couple of times because he thought all rice crackers were safe. i'll have to start marking things for him.

As far as allergy testing, so far my dr is just telling me dd will outgrow all this. and if she was referred it would be to a pediatrician not an allergist. i dont know if there is an allergist where we live. and i have heard that if there isnt an immediate hive or anaphylactic type reaction then the testing doesnt help much. what is ur experience w allergy testing?

Thanks again for all the feedback.....keep ur ideas comning.

PS...please if anyone has any thoughts on the increasing D, mucus in stool, and tummy aches,....please let me know.

[Celena]

also did you get new cookware or are you using your old stuff to cook with? if it is not stained or scrached it should be ok. wooden spoons and plastic ware needs to be tossed out and get new. there are some candies that have cc isuse. dums dums are on a dedicated line and are safe. we love to have those around for those sweet tooth fixes.

Jodele

Hi again,

i hadnt thrown out any cookware yet because to be honest we dont know it is gluten. gluten is just one of the possible culprits. and i figured that because she didnt have severe tummy or digestive troubles that probably molecular amounts of gluten probably wouldnt affect her.

maybe i will have to rethink this.

maybe this is why her D and tummy are worse now...??? she is reacting more severly than b4 to even tiny amts???? does that make any sense? i dont see why her reaction would get worse. it makes more sense that less gluten = less reaction, rather than no gluten except for a possible cross-contamination molecules = more reaction than ever b4 ?!?!

what do you think?

Celena

[Jodele]

Hi again,

i hadnt thrown out any cookware yet because to be honest we dont know it is gluten. gluten is just one of the possible culprits. and i figured that because she didnt have severe tummy or digestive troubles that probably molecular amounts of gluten probably wouldnt affect her.

maybe i will have to rethink this.

maybe this is why her D and tummy are worse now...??? she is reacting more severly than b4 to even tiny amts???? does that make any sense? i dont see why her reaction would get worse. it makes more sense that less gluten = less reaction, rather than no gluten except for a possible cross-contamination molecules = more reaction than ever b4 ?!?!

what do you think?

Celena

Hi Celena

sorry it took me so long to get back with you. we just got back from vacation. Yes defently this is a factor of cc we can not have any amount of gluten at all or we get sick. Thats why most of us do not like to go out to eat because of the cross contaimiation factor is so high. a crumb of a piece of bread can make us sick. When you get off of gluten and you are getting better the reaction to gluten is more suver reactions. It is like poison. go out and get you gluten for dummies and that will give you so much info and answers to your questions. could be that she is intorlorent to other foods also. sorry this is short I have a lot of un packing. if you have any more quetions please im me or leave another post.

Jodele