Another Ideas For Glutening Post...

[wsieving]

We have been gluten free since september. After the first month or so learning curve, my dd started just thriving. Past couple of weeks however, we have thought she was possibly getting gluten regularly somewhere. Well, now this weekend, it's like stepping back 6 months into what our life was like before going gluten-free. DD is cranky, bm's 3-4 times per day with horrid rash and swollen nodes in her groin, lack of appetite, wants to drink all day long, waking up in the middle of the night.... we have called all over the place, iams, purina (tidy cats litter), dawn dish soap, we have double checked every recent addition to the house that we can think of and are coming up with no answers. Everything should be ok. She doesn't go to daycare, I am a stay at home mommy. We never eat out. And it seems to be something that only she is coming contact with because I am not experiencing any symptoms. Is any type of fresh meat ever a problem? What about beef in a roll? I switched for a few weeks because we were coming on hard times, and i could get 93/7 at walmart in a roll for 2 per lb, so I decided to try it. Could that be the culprit?? PLEASE help!!! I'm at my wits end!!!

[ang1e0251]

Have you checked your cupboard maybe for items you normally buy but may have changed their formulas? My husband bought seasoned salt that was generic and I stupidly used it for awhile without checking it. Wheat.

Any drywall. wallpapering going on in her world? Playdoh or art supplies with gluten? Could you keep a food/symptom diary for a few days to try and pinpoint it? I found out that mini candy bars can have gluten even when the full size bar is ok. I tend to react to caramel coloring too.

I'm sorry she has to feel so sick. I hope you can find the answer soon. I'll be thinking of you.

[littleguyw/CD]

I found out that mini candy bars can have gluten even when the full size bar is ok. I tend to react to caramel coloring too

OH SNAP !! I went to the movies the other day and I did not want to give our son (DX on 12-05-08) the friut snacks that come with the "fun pack" because I was not sure! I did check the popcorn & everything they use and even got a print out from Harkins but I still wanted to give him a little something sweet (you know). Anyway i checked my list of gluten free snack food and saw that snickers where gluten free but I did not know I need to check the size!!! And I was wondering why he was sick!!

[mstroud]

I'm so sorry you're going through this! I'm right there with you!! I've had several times now where I've given my son (8) foods that I thought were gluten free and they weren't. The first time was right after he was diagnosed and I gave him Rice Dream rice milk 1-3 times a day. We took that out and he was great! Then recently he went back down hill complaining of stomach pain and after searching for 2-3 weeks, I finally realized it was the Hershey's miniatures and, I think, Ore-Ida steak fries. I thought the miniatures were fine as long as weren't the ones with krispies in them. Then I read that they all have malt / gluten. We were giving them to him for a treat after his lunch for 2-3 weeks! I'm still not positive about the fries, but they're not on Ore-Ida's gluten free list, but do have gluten free on the bag. Either way, I won't give them to him again.

I have been using a food journal again and detail everything that he eats (brand, etc.). He was better over vacation, but has been in pain the last couple of days which is why I'm not BACK to try and figure out what it is this time.

It sounds like you're very careful about what's around your daughter. I hope you figure it out soon! I sure was niave and thought that we'd start a gluten free diet and that would be the end to my son's pain and symptoms! It's a lot harder to be gluten free than I thought!

What about any juice (don't a few have gluten?)? I remember someone giving their child a certain yogurt that ended up having gluten in the vanilla ... would that be a possibility?

Good luck ... I'll be checking the responses! Margaret

[wsieving]

Thanks for all of the ideas. We still have an unidentified problem. I just can't figure it out. We have went through everything, and I mean EVERYTHING.... I just don't know what else to do. I wish someone could tell me what on earth is bothering my baby.

[sbj]

I wonder if this is not something that is due to a glutening and perhaps this is not related to celiac? If I recall correctly, your young one at some point began to see her issues resolve even while she was still having gluten. And, if I recall correctly, you were not able to get a celiac diagnosis. Perhaps something else is the culprit?

[wsieving]

It took us awhile to get the gluten-free diet completely right. Once we did, she became a completely different child. I did not get an official diagnosis, but after having her in the hospital hooked up to an IV due to dehydration I knew I had to try something. I still wondered in the back of my mind whether or not I was doing the right thing (even though I knew she was getting better) until the first time she had been truly glutened after being 100% gluten free for more than a month (the first month or two, we continually glutened her with something, making stupid mistakes, not being careful enough). DD and I were at a friend's house, and I didn't think boo about checking the floors to see if her toddler had dropped any food before we got there. DD found a graham cracker and I caught her right away. She had one bite, and within an hour had severe diarrhea and a horrid rash on her poor little bum. I knew right then and there that I had made the right decision. Remarkably too, Mommy has no more acne, no more skin rash on her arms or bum, no more joints so achy and stiff she can hardly climb out of bed in the morning, and has no more nightmares that have plagues her since childhood . So we figure she must get it from me. Once she is out of the house I plan to do a gluten challenge and get tested, but for now there is no point since the entire house is gluten free anyway. Only change later would be if I tested neg, we could resume life as normal and our food bill would be cheaper, but I don't know if it would be worth the return of my aches and nightmares.

Before going gluten free, we had allergy testing done as well. Those all came back negative, but I really knew by that point that it couldn't be anything else since she reacted so obviously to gluten products. The only thing that I wondered was that it might be a wheat intolerance or allergy, but that is not the case.

I do really wonder if there is another issue now however, because I just can't seem to figure it out this time. But it is like going to sleep and waking up 5 months ago to the baby I had before she went gluten free. It is so frustrating because I feel like I did before I learned about gluten intolerances - completely helpless, can't help my child.

I have already called Iams and they say their kitten food is okay, but I was wondering if that could be the culprit anyway. Does anyone use iam's kitten food? Also, P&G said their dish soap is okay too, but it has tocopheryl something or another in there and I read that it can contain gluten also. Does anyone have problems with P&G products?

[ang1e0251]

Someone on another thread mentioned they had a reaction from using the same can opener for the pet food as the people food.

Her reaction sounds like I get if I'm glutened by ingesting the same problem thing every day. I had a time narrowing that kind of reaction down. I'd look at something she is eating or taking (vitamins, supplements) daily and even if you've been using them and they shouldn't be a problem, take these items away one at a time. Keep your journal and this should clear it up. It will be harder to find if it's a toy she's chewing or her hair or if it's the cat eating gluten and licking it's fur then she touches it.

It's got to be so hard to do this with a child. I have a hard enough time trying to figure out myself.

[Fiddle-Faddle]

We had to switch our cat off Iam's because it did contain wheat gluten (and miraculously, his diabetes was suddenly controllable with a grain-free diet). The bag really doesn't list any wheat or wheat gluten now?

I'm not sure what a beef roll is. If that's something new that was introduced right before her downward spiral, that might be it. I've found that I have to check ingredients over and over, as things change often. Sam's Club chicken used to be gluten-free, but they switched suppliers, and now it's not. Which means that their chicken salad is not, as well--but it's not listed on their chicken salad even though they make it in-house. It's just listed as "Rotisserie Chicken"

Sliced deli meat can also be a problem, since something marinated in gluteny soy sauce could be sliced right before your purchase was sliced, on the same machine, and handled by the same gloves, as they don't change gloves between orders unless you ask.

And, as mentioned above, Rice Dream milk is NOT gluten-free even though it SAYS so.

[taweavmo3]

I'm pretty sure the beef rolls from walmart are okay.....I buy them and my super sensitive daughter doesn't react.

Is your dd dairy free already? That might be something to look into if you aren't doing that already. I had to take dairy out of my dd's diet about 2-3 months after going gluten free. We have done a dairy trial in hopes of tolerating it again, but even after 3+ years of being gluten free, none of the kids can tolerate it.

We have had instances where I know my dd got glutened, but I never figure out the culprit. During those times, I cut out as much processed food as I can, and stick to whole foods that could not possibly have any gluten. We stick with plain meat, veggies, rice, potatoes, and a little fruit. I try to minimize the fruit and juice when she's acting "gluteny", so that she doesn't take in to much sugar. Then I load her up on probiotics and hope for the best, lol.

It's frustrating, I know. Give it some more time too, I remember the first 6 months or more being full of good days as well as bad.

[sandejosgirl]

I don't know if this will be helpful as my fam is still going through the celiacs id. process but my kiddos have lots of other foods that they react to (most from birth, through my breast-milk even). I'm hoping once we get rid of gluten that our reaction to other foods will chill out.

We tested for other foods through patch-testing, where the allergist tapes the foods to the person's back. Instead of the allergy mechanism being histamine or IgA it is a cell-mediated (auto-immune) reaction that occures over time and exposure. From my newly aquired knowledge of celiacs it actually sounds like the same kind of reaction, but to other foods. Our allergist said that they developed the testing process to try to identify why people got excema and found that those same foods that gave excema also caused a gut reaction.

In my kids the reaction causes: colic, diahrea/constipation, gas/bloating, frequent night waking, excema and other? rashes, stool (and sometimes even urine) that "burns", sound familiar? It seems like very similar symptoms to celiacs. That's some of why we are having a hard time figuring out what exactly is going on in my family. Oh, and my 1 year old reacts to 10 different foods whether I eat them or she does.

I feel like this process is all about walking a maze that no one has a map to; stops and starts, turning around and trying a different path all in the hopes that there actually is a center to this maze and better health for my family.

[wsieving]

Sandie, that is really interesting. Be sure to keep us posted to let us know how what results. DD still has eczema on her cheeks, that lightened but never fully went away. Today was a good day. Only one poopie, and rash on her bum nearly gone. No crabby baby either. Last night I didn't cook in my kitchen. But I also didn't clean yesterday either ( I know... really, a girl needs a break every now and again, and DH is a truck driver so I take em when I can ).

Also, up until this morning I believed it must only be something she was ingesting/coming into contact with b/c I was not reacting.... WRONG!!!!! Every joint in my body hurts today, like they used to every day, and my knees are so bad I can hardly get up and down. I generally rely on nightmares for my indicator. I have been dreaming more, and mostly unpleasant, but nothing I consider to be a nightmare (my nightmares are unbelievably real and terrifying), so I really thought I was ok. I do not tend to react myself with the big D, haven't really since my teenage years and just assume that I'm probably taking longer to heal??? At any rate, my joints haven't hurt since being off gluten completely and today it's back with a vengeance.

Problem is so much changed all at once, mostly because of a different lifestyle. I finally got off my arse and made it in to the good head doc and got myself some long needed but completely unwanted medication for ADD. As much as it makes me mad at myself for needing it and at the world for forcing it on me, it really has changed all of our lives. I became a more productive housewife, a better mom, a better wife/friend to my husband, and a friggin awesome chef! Which in turn means new/different cleaning products and food items. And of course all of the manufacturers want to tell me that their products are gluten free. IAMs even told me that they do not put wheat in ANY of their products, but their webpage has a long article about why they put wheat in their pet food and the benefits it holds for the animals .

So this weekend we are going to a pet food store in the city to buy food that we know for SURE is ok (there is no place in my area to get something like that), I'm buying new dish soap that I know is safe just in case, and I am throwing out ALL of my flours and spices that came from the country bulk store (I asked them specifically how careful they are, but my flour leaked on me on the way out of the store, so how do I know for sure if the bags aren't even securely closed??? We are really pointing our finger in this direction the past day or so).

I also recently started using a different disinfecting spray around the house and there are no ingredients listed on the can other than the active ones. I am very suspicious of it too, but will have to wait until morning to find out. If anyone knows, it is the Garden Bouquet Clorox Disinfecting Spray.

Anyway, I will keep you all updated and I thank you so much for your responses. It is nice to come here where people totally understand and do not look at you like you are crazy for wondering if such and such chemical "glutened" your daughter.

By the way, the past couple of weeks must not have set her back too far because she had a check up today and weighed over 23 pounds!! She was fully clothed mind you, but I'm figuring her tiny clothes and shoes couldn't have weighed more than half a pound. Her weight put her close to the 50% and her height between the 75th and 90th!!!! Before going gluten free she was below the 3% and had fallen to the 25% for height. My heart just leaped with joy!!!

[sandejosgirl]

Good morning from the west coast!

I have another idea from a fam. in the process . My babe was just diagnosed with Crohn's and Celiacs. In Crohn's the symptoms are similar but are not (in my limited understanding of Crohn's) caused by a glutening. Are you talking with your Dr about her symptoms? We didn't think Crohn's was even an opt. until the blood tests came back positive.

Hope that's helpful.

[wsieving]

I thought I should update you all and let you know what the culprit was. This is really stupid on my part, but it WAS the flours/spices from the bulk discount store. As soon as we threw all of them out and bought new flour and spices DD cleared right up. I think with income tax this year we are going to buy cases of the things we use most so that we do not feel a need to shop at bulk discount stores. It soooooooo was NOT worth the headache, nor my daughter's tummy ache, that's for sure. Thanks for helping everyone!