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getsetgo

4 Days Into gluten-free Diet And 15 Month Has Hives?

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Hi

We are now 5 days into a gluten-free free diet but also eliminating Milk and Soya. So far we have had a vast improvement on the state of his nappies the first couple of days they were explosive, smelly and not nice but as each day has passed they have got a lot better, still not solid (Sorry if TMI!) Dairy/Soya free didn't make any difference at all which is why a took him off the gluten as well. Maybe barking up the wrong tree as they say but got to be worth a shot?

Yesterday when I got my ds dressed I noticed a rash on his right thigh and the cheek of his bottom, looked a bit like the spots you would get on your face.

At lunchtime I gave him a Gluten, Dairy free slice of toast with pure spread and some peanut butter along with some grapes. He started sneezing through lunch although nothing else noticed at the time. An hour later I noticed a pinprick type rash over his chin, mouth, neck and chest which by 6pm had got more dense and a bit wider spread. His legs had the rash but nothing to report on his trunk or arms? Gave him a spoonful of piriton and this morning the pinprick rash has gone but the spotty one remains on both thighs and his bottom cheeks.

The only other new thing introduced was Nutramigen which he started on the day before but only 1/2 ounce in an 8oz bottle of rice milk.

Could it be the nuts in the peanut butter which caused the rash?

Do you think it would have got worse anyway as he had a spotty rash on his leg in the morning and its just coincidence that he had the nuts?

Any thoughts or suggestions would be gratefully received!

Lisa

x

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Has he recently been vaccinated? My son broke out in hives from the flu shot, and reacted poorly to the MMR as well. Do you give your son peanuts often? If not, maybe it is a peanut allergy and you should get him tested for allergies. I think I have read on here that some people cannot tolerate tapioca. What grains were in the bread? Sorry I could not be more help.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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Hi

Thank you for the replies!

The bread was made by Livwell it was white sliced. Not sure of ingredients as I threw it in the bin this morning in case it was that. He has been egg free, not intentionally but all the foods he has had have happened to be egg free, until the bread yesterday at lunch.

He started a milk/soya free diet 9 days ago and I took out Gluten on day 5, it may just be a coincidence but within 24 hours of being gluten, milk and soya free his nappies drastically improved within 24 hours and have continued to improve on a daily basis that was until today!

Just changed his nappy and we are back to a mucousy, yellow stinking mess again! The spotty rash on his thighs is still there but again no sign of the pinprick one.

The dietitian suggested peanut butter for the calories as I was concerned about his calorie intake. From what I have read a peanut allergy can sometimes can go hand in hand with soya?

Should I also eliminate egg and peanuts as well for the time being and if so would that include products that may contain traces of nuts?

One other question on a different note! One of his jars of babyfood said it was gluten free but contained wheat? Should I avoid wheat even though it is gluten free?

This is so frustrating!

Everything he has had has definately 100% milk, soya and gluten free!

Any thoughts?

Thanks

Lisa

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Ok, take what I'm about to say with a grain of salt, because I have only recently been researching this, but...

It's my understanding that different countries have different ideas of what gluten-free means. In America, most of us say that to be gluten-free, that means no detectable levels of gluten at all. Many of us are extremely upset that new labeling laws are going to allow manufacturers to label their products gluten-free even if that product has up to 20 ppm (parts per million) of gluten.

Furthermore, there are countries that maintain that you can remove the gluten from wheat, and be left with wheat starch. That may be what you saw in your baby food, and it may also be present in your "gluten-free" bread. As far as I know, wheat starch is NOT allowed in gluten-free foods here in America.

I have to tell you, that for my children, I would never give them anything with wheat starch. I feel that that may be the problem that your baby is having. That doesn't necessarily mean he can never have bread made in your country, though! I would try making it homemade, so that you can control the ingredients.

So, I hope this didn't come off as being American-snobby- I'm NOT like that, I promise. But there are simply different labeling laws and standards in different countries.

Definitely stay away from anything that has wheat or wheat starch as an ingredient, no matter if it's labeled gluten-free or not. I bet his symptoms will improve again. I can't really speak much to the other allergens, since we haven't had to deal with them.

I have heard other people suggest cooking in coconut oil, and using coconut milk, to add calories though. Also, if he can do other nuts, a lot of people here really like other nuts butters, like almond and cashew.

I hope this helps!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Hi Sarah

Thanks for that!

The bread that ds had yesterday is made from tapioca starch and rice flour, potato starch in and not wheat starch?

You need a degree to work this lot out, finding all rather confusing and overwhelming, just want to get my poor baby sorted out!

Thanks again

Lisa

P.S Below is our legislation here in the UK/EU regarding Gluten Free for those of you who are interested? lol

EU wide allergen labelling directive 2003/89/EC became mandatory on 25th November 2005 and applies to all pre-packaged foods. This directive is a major step forward for people with coeliac disease and dermatitis herpetiformis.

Gluten containing cereals (wheat, rye, barley, oats, spelt, kamut or their hybridised strains) are one of the 12 food allergens that must be declared on the ingredients list, regardless of the amount used.

All ingredients, including additives, flavourings, processing aids and solvents are included in the new labelling regulations, whereas before these did not have to be listed (1).

All allergens and ingredients derived from allergens will have to be specified unless they are on the exemptions list (1). The European Commission has worked with the European Food Safety Agency (EFSA) to develop a list of ingredients that are exempt from labelling.

The following ingredients are exempt from allergen labelling as evidence has shown that processing has removed the allergenic factor (2). They are therefore suitable for people with coeliac disease:

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Ok, awesome- posting the UK legislation helps. I had not read that yet. It sounds good until you get to this part:

The following ingredients are exempt from allergen labelling as evidence has shown that processing has removed the allergenic factor (2). They are therefore suitable for people with coeliac disease:

• glucose syrups derived from wheat or barley including dextrose

• wheat based maltodextrins

• cereals used in distilled products like spirits (3)

Other gluten-free ingredients include textured vegetable protein, caramel, artificial sweetener, aspartame, dextrose, xanthan gum, maize starch, modified starch, modified maize starch, sorbitol, maltitol and isomalt.

Products that do not comply with the new allergen legislation are prohibited from sale.

The European Union follows a different standard and is guided by the Codex Alimentarius, which is managed by the Food and Agriculture Organization of the United Nations (FAO) and the World Health Organization (WHO). The standard “allows products to be labelled gluten-free that contain an ingredient called “Codex wheat starch,” which contains 200 parts per million of gluten..

This is where things get controversial. If you do a search on this message board, you'll find a lot of hullabaloo about Codex labeling. You guys have had Codex for quite awhile, but we're just now getting it- and a lot of Celiacs here are extremely unhappy about it. Most of us feel like 200 ppm (Argh, I thought it was only 20! :( ) is way too much.

For years, Celiacs have been told that if they go overseas, or buy a food that was manufactured overseas, to avoid all the ingredients noted in this quote: modified food starch, maltodextrin, etc. Specifically because they do have gluten in them and will cause a reaction.

To give you another example-- Rice Dream rice milk contains gluten. This used to be labeled on the container. Now that they are following Codex laws, they're labeling the product gluten-free, even though they didn't change their formula. Most Celiacs still don't drink it, because regardless of labeling laws, we don't consider it safe.

Now, having said all that... This is just one possibility of why your son had that reaction. It may have been something else entirely- I have no way of knowing. But I do feel like it's a possibility. 200 ppm just seems like way too much to not cause a reaction!

And if his baby food said gluten-free, and still had wheat on the label- wheat starch?- it seems like this is a real issue.

I'm hoping one of our other UK members will chime in on this. :( How do they deal with Codex labeling? Personally, I dread it when it goes into full affect here.

PS- Yeah, potato starch is fine- no gluten in potatoes!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Its funny you should mention rice milk, this is what ds is drinking! We started it over a week ago and had no reactions that I have noticed? I went onto the website where it stated that it was gluten free but may contain traces of pearl barley?

Trouble is what else can I give him, at the moment I am trying to get him onto the nutramigen by adding an extra ounce every day to his rice milk to hopefully wean him onto the formula, I am not holding out much hpe though!

Just looked at a jar of babyfood which states gluten free but has wheat as an allergen! It has wheat starch (gluten free), cornflour and corn oil in it.

The nutramigen coud be a culprit too? He did start this the day before the reaction?

And then theres the rice milk? Any suggestions? Just bought a truck load of this as it was on buy one get one free lol but I have got the option to take it back!

I take it that if it has wheat, oats, corn etc in it but states gluten free avoid it like the plague?

Do I remove egg and peanuts from his diet too?

I feel like I am sinking into a big black hole with this lot, finding it hard to deal with right now! But I know I have to continue to help my little man.

Ok, awesome- posting the UK legislation helps. I had not read that yet. It sounds good until you get to this part:

This is where things get controversial. If you do a search on this message board, you'll find a lot of hullabaloo about Codex labeling. You guys have had Codex for quite awhile, but we're just now getting it- and a lot of Celiacs here are extremely unhappy about it. Most of us feel like 200 ppm (Argh, I thought it was only 20! :( ) is way too much.

For years, Celiacs have been told that if they go overseas, or buy a food that was manufactured overseas, to avoid all the ingredients noted in this quote: modified food starch, maltodextrin, etc. Specifically because they do have gluten in them and will cause a reaction.

To give you another example-- Rice Dream rice milk contains gluten. This used to be labeled on the container. Now that they are following Codex laws, they're labeling the product gluten-free, even though they didn't change their formula. Most Celiacs still don't drink it, because regardless of labeling laws, we don't consider it safe.

Now, having said all that... This is just one possibility of why your son had that reaction. It may have been something else entirely- I have no way of knowing. But I do feel like it's a possibility. 200 ppm just seems like way too much to not cause a reaction!

And if his baby food said gluten-free, and still had wheat on the label- wheat starch?- it seems like this is a real issue.

I'm hoping one of our other UK members will chime in on this. :( How do they deal with Codex labeling? Personally, I dread it when it goes into full affect here.

PS- Yeah, potato starch is fine- no gluten in potatoes!

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Lisa, (((Hugs!!!))) I know the black-hole feeling! I know this is tough. Take it one day at a time, and keep reading and researching, as much as you can. The more you learn, the more you'll be able to help him.

Corn doesn't contain gluten, so that's fine for him. There are only four foods you need to worry about for gluten: wheat, rye, barley, and oats. (Oats do not actually contain gluten, but are almost always cross contaminated with wheat.)

Egg and peanuts-- Well, the fastest way to get him feeling better is to eliminate all suspects at once. Then, once he has been doing well (symptom-free) for about 10 days, you can reintroduce one food to see if he reacts. If he hasn't reacted in five days, the food can be considered safe. If he does react, ban the food, and wait for him to be symptom free for 10 days before reintroducing the next food.

If you can't get him to be symptom-free for 10 days, you need to eliminate a few more foods, etc, until you can achieve 10 days.

Here's one way you feed him without worrying too much about the whole Codex and wheat starch stuff for now: Try to give him only naturally gluten-free food. Meats, veggies, fruit, etc. Once you've gotten him straightened out, you can test a "gluten-free" product now and then to see if he reacts to it.

Have you checked out Andrea's thread of recipes? They might be really helpful to you, there are a ton of soy free, gluten-free, dairy free recipes there, including basic instructions on how to make your own nut milk. Most of the recipes are egg free as well. The thread is here: http://www.glutenfreeforum.com/index.php?showtopic=23795

As for the rice milk and baby food... Remember that I'm not a doctor. All I can tell you is what I'd do in your situation-- I would not give him anything with wheat starch, or anything that's known to have trace amounts of wheat, barley, rye, or oats. How else are you going to know that the gluten-free trial diet is valid?

Also, with the bad diarrhea, is he getting raw on his butt? My younger son used to get like that, it was horrible. He would get actual open sores-- which usually need a yeast infection cream, by the way. I recommend NOT using baby wipes if his butt is irritated. Those wipes burn. Just use water.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Hi Sarah

That all made so much sense! Thank you!

I have made lots of notes going to need a new notebook soon lol !

The info regarding the being clear for 10 days and then reintroducing was really helpful. I will take a look at Andreas recipes later today when ds is asleep and I can get an hour to myself. Recipes I have found to be a nightmare so far so hoping these will help.

Going to add eggs and peanuts to the no no list for now as I can't decide which one if any was the culprit, as far as the rice milk is there such thing as one that doesn't contain traces? He is a dreadful eater and trying to get him to eat anything has been a real struggle, I have had to feed him bottles of milk to stop him crying because he is hungry and of course I have been slipping in the Nutramigen, a little more added every day until he is taking 8 ozs and then cut down the rice milk, so the intention is to take him of rice milk altogether if he will? He can't have soya, nut milks could be suspect now because of this reaction?

His butt has been bad off and on, sore, bleeding, looks like he has ulcers, he has the allergy ring 24/7 but the other symptoms do come and go. This started to clear up a bit when we took out the gluten, I am using baby wipes but will definately change to water and cotton wool, never even thought of that, poor little mite screams when I touch it even to put barrier cream on so what you have said makes so much sense. Sometimes it takes someone else to point these things out!

Thank you so much for your help!

You take care

Lisa and Ben

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Lisa,

If you see a recipe of Andrea's and have any questions, just reply in that thread. She still keeps an eye on it, and will reply!

I would hope there are rice milks that don't contain known traces of gluten. :( But I haven't had to look for one myself, and also you probably have different brands over there than we have here. My suggestion would be to look on the packages first. If you can't find anything, or you're just not sure, get back on here and start a new thread in the Products forum asking about it. Note in the description line that you're in the UK.

The Nutramigen is a baby formula, right? (I don't think we have that here.) Is he going back on baby formula for the extra nutrients?

What foods does he like right now? It won't hurt him to load him up on a healthy food that he loves, whether it be a particular fruit or vegetable, or whatever. Worry about variety later, especially if he's getting some of the formula too.

What is an allergy ring? Has a doctor seen the bleeding sores on his butt? These open sores on a baby in diapers get yeast infections very, very easily. My younger son got these several times, and it required a yeast infection cream to get rid of it. We used Niastin? Nistatin? Something like that, and it's prescription only, here.

I totally understand about the baby wipes, I don't like to think about how long I used them before it hit me. The method that seemed to cause the least pain for him, was to actually stick him in the bathtub, have him turn around and touch his toes, and I would just pour room temp water over his butt. I know that's not always possible, but I just tried to do this as much as possible. When we were out, I'd put washcloths and a few bottles of water in the diaper bag. Also include a plastic bag to put dirty washcloths in.

Also, some (but not all) diaper creams do have wheat in them. :( Make to check that! It's controversial whether a topical product can cause a reaction, but I'd definitely avoid it on a baby. There are creams that are gluten-free, you just have to look.

Talk to you soon!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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