I'm So Discouraged! My Son Is Not Doing As Good As He Was At First.

[ARK]

When we first went gluten free, my 14 yr old son improved drastically, but lately he has been feeling bad again although not as bad as before.

He was REALLY irritable and depressed today and I was afraid that meant worse things to come.

Then, he ate a few pepperoni pieces and some rice cracker thingies made by Quaker when we were at my husband's company Christmas party. He thinks those rice things made him sick - they do have soy in them. I'm wondering if it was that, or the pepperoni, or something else entirely - maybe something from yesterday. ??? ...since he was cranky all day, and that is usually the first sign.

I took all his food with us today just to be safe, but STUPIDLY didnt think the pepperoni would have any gluten in it. I have GOT to learn to play it safe!!!!

If I had THOUGHT about it, I wouldnt have let him have any, but my problem is that I have an awful terrible horrible memory, and I often forget things I shouldnt. I am sure there is something wrong with me too!!! I was gluten free until last night when I ate 1 piece of bread with ham and I got so nauseous.

I thought I had gotten rid of all CC issues - like wooden spoons, cutting boards, and teflon pans. BUT, now that I think of it, that was only 2 days ago, so he may still be reacting to something from then.

I wonder if we should have regular allergy testing done for things like dairy, soy, corn, eggs, etc?

He does fine with fresh raw goat milk, that much I am thankful for! He eats yogurt made daily from fresh goat milk, and it is a BIG help to his stomach.

He is lying in his bed right now just feeling awful - shaky and nauseous. I would give anything if it were me instead of him...

Sorry about all the rambling!

ARK

[psawyer]

The pepperoni may have gluten. Not all pepperoni does, but it is common to use wheat flour as a binder in sausages including pepperoni. You must examine the ingredients carefully to see if it contains wheat. It is also possible that the sausage casing contains gluten, although this is less likely.

Quaker products have been the subject of much discussion here. Their oats are known to be contaminated with wheat. They are not unique in that, but testing has shown that theirs have higher levels of wheat content than most other brands. Whether their other products (without oats) are also contaminated is unclear. I have not personally had a problem, but others have reported adverse reactions to Quaker rice cakes.

[Rachel--24]

Hi...sorry your son isnt feeling well. I just wanted to mention that Quaker rice cakes have cross-contamination issues. They are not guaranteed gluten-free.

[mommida]

He was most likely glutened from the soy ingredient. Hormel's pepperoni is gluten free, and is labeled gluten free.

L.

[Lisa]

Hormel is a wonderful company and it will list many products as gluten fee, and they will always list.

[celiacgirls]

From what I read here, Quaker products are not gluten-free even according to Quaker. I think the risk of cc is too great.

What kind of pepperoni was it? I buy Hormel and it is gluten-free for sure.

I think my daughter's reaction to gluten of irritability is a few days after eating it. Unfortunately, it seems to last for a week or so.

And finally, are you sure he isn't eating something on his own with gluten? My 10 year old is definitely not as strict as I would like about making sure her food is free of cc or hidden ingredients. Her main symptom is irritability so it is very aggravating to us all when she cheats.

[ARK]

The pepperoni may have gluten. Not all pepperoni does, but it is common to use wheat flour as a binder in sausages including pepperoni. You must examine the ingredients carefully to see if it contains wheat. It is also possible that the sausage casing contains gluten, although this is less likely.

Quaker products have been the subject of much discussion here. Their oats are known to be contaminated with wheat. They are not unique in that, but testing has shown that theirs have higher levels of wheat content than most other brands. Whether their other products (without oats) are also contaminated is unclear. I have not personally had a problem, but others have reported adverse reactions to Quaker rice cakes.

Thanks - since he feels strongly about it being the Quaker rice cakes for SURE, we wont buy those again. Sometimes he gets a strange "feeling" about something he ate and says that it is going to make him sick. Even is he actually LIKES the taste of whatever it was!

I will check on pepperoni before I let him have that again....

And I will call the doctor tomorrow and see what he recommends as far as allergy testing.

Thanks for mentioning sausage casings! I have some in the freezer because I am fixin to make home made sausage from our own home raised pork and venison so I will be sure to read the label!

What kind of allergy testing is recommended?

[happygirl]

Just wanted to add, you can NEVER assume that ANYTHING is safe. You can't make generalizations like "pepperoni is safe" or "pepperoni is not safe" with most products (the obvious are things like bread and pasta which obviously have wheat ). Because today's food are all so processed, and can be made with different ingredients, you can never just say, "Oh, that should be ok."

My rule is: do not eat it unless you know what the specific ingredients are for that specific food. do not eat it unless you know how it was prepared. Strict, yes. Annoying, yes. Potentially overboard, yes. Does it work for keeping me gluten free: Yes.

[ARK]

Thanks - since he feels strongly about it being the Quaker rice cakes for SURE, we wont buy those again. Sometimes he gets a strange "feeling" about something he ate and says that it is going to make him sick. Even is he actually LIKES the taste of whatever it was!

I will check on pepperoni before I let him have that again....

And I will call the doctor tomorrow and see what he recommends as far as allergy testing.

Thanks for mentioning sausage casings! I have some in the freezer because I am fixin to make home made sausage from our own home raised pork and venison so I will be sure to read the label!

What kind of allergy testing is recommended?

OH WOW!! Thanks to you ALL for all those replies!

The pepperoni was at the party, with no package to read, so I dont know what brand it was. I will remember that (or try to!) about Hormel though. THANKS!

I will write down the info about Hormel and Quaker in my shopping notebook (aka "my brain") so if I forget at least it will be written somewhere.

I just feel so frustrated that I feel SURE he has NOT been glutened at home all last week, but he still had several bad days, and even some horrible days! Maybe two good days all week. So, it must be either CC or some other food allergies. Unsure....

And finally, are you sure he isn't eating something on his own with gluten? My 10 year old is definitely not as strict as I would like about making sure her food is free of cc or hidden ingredients. Her main symptom is irritability so it is very aggravating to us all when she cheats.

Yes, we all get aggravated too!!!

No, i dont think he is cheating. He is such an amazing kid - he has this really honest streak and tells on himself all the time because he cant handle a guilty conscience. I asked him today if he knowingly ate anything that he shouldnt have and he said "No way. i feel too sick to do that." I do believe him because I am always around him - we homeschool, for one thing. So, it's not like he is eating away from home. I fix almost all his meals and snacks because he is too sick to do it himself.

[taweavmo3]

I just wanted to add that my daughter got sick from the Quaker rice cakes, both the big ones and the minis. This was a while ago, but she definately reacted to them. Now we use Lundberg rice cakes, which are pretty good. So maybe that was the culprit??? Hope he feels better soon!

[celiacgirls]

We noticed a big improvement with my daughter when she went gluten-free but then we had to eliminate casein, too. Some of what I thought were glutenings were actually from casein.

We did the Enterolab testing on her just for milk and gluten but they can also test for soy, eggs, and yeast. You could also just do an elimination diet to see if he had any other intolerances.

[Guhlia]

I second the recommendation on Enterolab testing. If nothing else, it will put your mind at ease as far as other intolerances. Have you eliminated any gluten in lotion, shampoo, soap, hair care products, chap stick, and girlfriend's lipstick (if he's that old)? Just because there isn't wheat listed on the label doesn't mean it's gluten free. You'll need to call the companies. Other common places that gluten can be hiding include toasters, bread machines, collanders, oven, toaster oven, microwave, refrigerator, freezer, and utensils. I'm not saying that you should replace all of these items, just be careful and clean, clean, clean. If your entire house isn't gluten free, you may want to consider going gluten free for everyone. Are family member's body products gluten free? You could be hugging him and getting gluten on him that way if you're using gluten-filled soap or hair product. It's not an easy process eliminating all gluten from a household, but it can be done, and it's well worth it for those mystery glutenings to disappear.

[Jellieh]

My rule is: do not eat it unless you know what the specific ingredients are for that specific food. do not eat it unless you know how it was prepared. Strict, yes. Annoying, yes. Potentially overboard, yes. Does it work for keeping me gluten free: Yes.

I love this!

[ARK]

After a REALLY bad day I just read over all yalls helpful replies and was encouraged once again!

My poor son took a "potato wedge" yesterday without asking and ate a huge bite before I saw him. Then our eyes met and I guess he could tell by the look on my face I was fixin to yell "Put that down quick!" because he dropped it fast. Swallowed what was in his mouth though, DARN IT.

Those things are dredged in all sorts of flour and spices.... we were at someone else's house.

So, today there was a HORRIBLE depression, bad stomach ache, aching joints, shaking hands, etc etc....

The depression is what gets to me. I can help him with the physical stuff but when he starts telling me there's "no use going on" it just breaks my heart!!!

I hope tomorrow is better - I am going to fall into bed now even tho it is only 8:20.

I love this!

Me TOO! I found out the hard way "better safe than sorry!"

[VegasCeliacBuckeye]

FYI, in my 10+ years as a Celiac, I have never encountered a pepperoni that contained gluten. The only sausage I have seen that contains gluten is made by Farmer John.

Quaker products are not reliable and are notorious for CC issues. I would be willing to bet that Quaker made him sick...

[happygirl]

I love this!

Thanks Its a pain, but its my method to make sure I'm gluten free. I get horribly sick from tiny amounts, and realized it was my own fault I was getting sick. I stopped doing those things that were ok for "some" and I got better.

[Fiddle-Faddle]

He was most likely glutened from the soy ingredient. L.

You can't get glutened from soy, you can only get glutened from gluten!!!!

[wonkabar]

My 3 1/5 year-old son had a WILD reaction after eating Quaker rice cake mini's. He was an absolute beast and had awful GI symptoms the entire week he ate them. It was the only thing different in his diet and as soon as we eliminated them his behavior improved 100%. Gluten has a major impact on his behavior. In fact we see this more readily than overt GI symptoms if he's been accidentally glutened.

We didn't know at the time that Quaker had major cc issues. Hormel Turkey Pepperoni is great. It's one of my little guys favorite snacks.

[mom2jpb]

When we first went gluten free, my 14 yr old son improved drastically, but lately he has been feeling bad again although not as bad as before.

He was REALLY irritable and depressed today and I was afraid that meant worse things to come.

Then, he ate a few pepperoni pieces and some rice cracker thingies made by Quaker when we were at my husband's company Christmas party. He thinks those rice things made him sick - they do have soy in them. I'm wondering if it was that, or the pepperoni, or something else entirely - maybe something from yesterday. ??? ...since he was cranky all day, and that is usually the first sign.

I took all his food with us today just to be safe, but STUPIDLY didnt think the pepperoni would have any gluten in it. I have GOT to learn to play it safe!!!!

If I had THOUGHT about it, I wouldnt have let him have any, but my problem is that I have an awful terrible horrible memory, and I often forget things I shouldnt. I am sure there is something wrong with me too!!! I was gluten free until last night when I ate 1 piece of bread with ham and I got so nauseous.

I thought I had gotten rid of all CC issues - like wooden spoons, cutting boards, and teflon pans. BUT, now that I think of it, that was only 2 days ago, so he may still be reacting to something from then.

I wonder if we should have regular allergy testing done for things like dairy, soy, corn, eggs, etc?

He does fine with fresh raw goat milk, that much I am thankful for! He eats yogurt made daily from fresh goat milk, and it is a BIG help to his stomach.

He is lying in his bed right now just feeling awful - shaky and nauseous. I would give anything if it were me instead of him...

Sorry about all the rambling!

ARK

ARK -

Please stay away from sausage. I had to go to the ER after eating a gluten free biscuit with a sausage patty in it. The SAUSAGE had the gluten. Unless you grind the meat yourself, or go to a butcher who grinds it and does not use binders - DON'T EAT SAUSAGE!!! It's not worth the pain. I agree with you on your last statement - my 7 year old is autistic and I would give my right arm if I could be disabled for him. No one cares as much as mom. Peace.

[ARK]

ARK -

Please stay away from sausage. I had to go to the ER after eating a gluten free biscuit with a sausage patty in it. The SAUSAGE had the gluten. Unless you grind the meat yourself, or go to a butcher who grinds it and does not use binders - DON'T EAT SAUSAGE!!! It's not worth the pain. I agree with you on your last statement - my 7 year old is autistic and I would give my right arm if I could be disabled for him. No one cares as much as mom. Peace.

Well, that makes me SO glad that we butchered our own organically raised pig 2 weeks ago and made sausage! NO GLUTEN!! I'm so glad you said something tho, so I will be sure to think of it when at relatives house.

My kids are going to spend the night with their grandmother tomorrow night and i am so nervous! I know she would NEVER purposely serve him any gluten, tho. She went and bought some Amy's gluten-free frozen dinners for my son!!!

Wasnt that nice??? She is the best mother in law.

I will be sending all the rest of his food - the snack and the breakfast, so I am only worried about CC.

[anerissara]

Yup, you have to be very careful about pepperoni, lunch meats, sausages, hot dogs...even bacon! They often have wheat binders or wheat starch. I remember back to making meatloaf, how many recipes call for bread crumbs....same idea with the meat products. Also watch out for meatballs, because it's hard to find commercial ones that aren't gluten-full. i was so bummed the other day, I called a local company that makes wonderful sausage to see if I could have their Italian links....nope, gluten. Hormel, as everyone has said, is really terrific! Their Turkey Pepperoni is super and really low fat. Most Boar's Head meats are gluten-free and really tasty as well.

I don't eat Quaker rice cakes either, I just figure there's so much wheat floating around in their factories that they probably are pretty CC'd.

I know how you feel about the potatoe wedge...my son will occationally get something that he doesn't think about as being gluten and you just want to push rewind and start over. It's so hard to see them suffer.

Good for you for making gluten-free sausage at home! Wow. It's so nice to *know* you're safe and that there's no CC going on. I hope your little guy feels better! My son is just about the same age, it can be hard especially at parties to keep them gluten-free. My son is like yours, though, in that he would never purposely let himself get glutened. The last bad experience involved heartburn that kept him up all night, and even tho it's been 2 years it's apparently still fresh enough in his mind that he knows it's just not worth it!

[Fiddle-Faddle]

There are some super simple sausage recipes that you can make with any ground meat--beef, pork (cheapest by far), turkey, Kosher meats, etc.

Here's one:

Maple Fennel Country Sausage Patties Recipe courtesy Rachael Ray

Show: 30 Minute Meals

Episode: Breakfast in Bed

1 teaspoon coarse salt

1/2 teaspoon coarse black pepper

1 teaspoon fennel seeds

1 pound ground pork

2 tablespoons maple syrup

1 tablespoon olive oil or vegetable oil

Combine salt and pepper, fennel in the bottom of a bowl. Add pork and mix to combine spices. Pour 2 tablespoons maple syrup over the pork and work the meat again to combine the maple syrup. Form meat into patties, 2 to 3 inches round. Cook patties in 1 tablespoon oil in a nonstick skillet over medium high heat 4 or 5 minutes on each side. Drain sausage patties on towel lined plate, then serve.

Other Recipes from this Episode

Pain Perdu - Lost Bread, a.k.a. French Toast

Mimosas

[ARK]

Thanks for the recipe!!

I always like to try new flavours for our sausage.

I made some jerky today with venison and everyone loved it.