Feel Like We Are Back To Square One

[theclutterhouse]

Hello,

We are a family of five dealing with celiac disease for just over 1 year. Although I do not have the disease, my wife and two of my three children do. We've learned alot over the last year and for a while I thought we had adjusted pretty well. The main reason I'm writing is because of my oldest son.

When he was first diagnosed last year, he was very sick for the first four months, even after we went gluten free. He had to be taken out of school and tutored at home. Many days he was completely bedridden with extreme nausea. Our doctor and gastrointestinologist tried some medications, but nothing worked. They both said that it would take time for his intestines to heal. Eventually he did seem to recover and by late spring he seemed to be almost fully recovered. We kept him out of school until the end of the year because we didn't want to overwhelm him and set him back.

When school started back up, we sent him back with our fingers crossed. The first two months went well, then he started to slide back into the same symptoms as before. He has severe nausea, headaches, and diziness. By early November he was out of school again! We just had another endoscopy performed on him and the results said that his intestines were damaged as much as when he was not on a gluten free diet.

My wife and I are devastated and pulling out hair out trying to figure out how this could happen. We have taken all the recommended steps to a gluten free household. All of our meals are gluten free, we only buy foods that say they are gluten free or if not we contact the manufacturer before just to make sure. We know that he has not cheated on the diet. We've asked him about it and he has told us that he knows the consequences of cheating and that he knows it would not be worth it. He was taking his lunch to school every day. My wife and I have come to the conclusion that he must have been contaminated somehow by going to school. I know that there is controversy over whether exposure to airborne gluten may or may not be harmful. The reason we're thinking this is our daughter has also experienced some problems. She just had a bloodtest and her levels have tripled since she went back to school. We are wondering if something is passing through the ventilation system. I'm hoping that someone has some insight or suggestions that may help us come up with some answers.

Another concern that we have is that his biggest symptom is nausea, which is not high on most lists of symptoms of celiac disease. We are wondering if there is something else going on.

[Piccolo]

Theclutterhouse,

Welcome to the site. It is a great place for learning. Do you know if your children have other food sensitivities? That might be contributing to the problem. Also play dough has gluten. Dairy can also cause problems.

What about all personal care products. They must be gluten free also.

Susan

[ravenwoodglass]

Another thing to look into is art and craft supplies, things like glues and paint, clays etc. Pet foods are also another source of contamination. Airborne gluten is usually only a concern with things like flour in baking, that can take up to 2 days to settle. Has the school been notified about the celiac so the teachers can do all they can to keep them safe?

[dilettantesteph]

In a way it is good that you had the endoscopy because then you know that the problem is gluten. You just have to figure out where it is coming from. Airborne gluten will bother sensitive people like myself. When I cleaned out our kitchen and threw out the flour I was as careful as possible and still got sick for two months. Stupid me, I put it in the compost, so gardening bothered me for a long while more. Just being in the building shouldn't be enough unless they spray flour everywhere. You don't say his age. Does he take a class in which they cook with flour? A doctor's note got my son out of that class. My son is 11. In science class they did an experiment with growing mold on bread. I contacted the teacher and whenever they did that experiment my son left the room and went to the library. In hindsight I should have purchased gluten free bread for the whole class so that he could have participated. The teacher also made sure to keep part of the classroom bread free so that my son would have a safe place to sit.

The lunchroom probably isn't cleaned well. At my son's school they have a peanut free table which is cleaned better and he can sit there. He also on doctors suggestion uses his own lunch tray to help avoid contamination from the tables. He keeps it in his locker.

His main symptom is also nausea. He also gets really irritable and doesn't concentrate well on his studies. I think that even with all these precautions he gets gluten sometimes. I was in there the other day and every kid in the place seemed to be having some sort of gluten snack spilling crumbs everywhere, touching doorknobs etc.

Another thing we do is put water and a paper towel in his lunch bag so that he can wipe his hands before he eats. Alcohol wipes would be more effective, but he has dry skin. It would be better to wash with soap in the bathroom but he says he doesn't have time. If your son bites his nails, he has to stop, at least at school. He should wash his hands often.

The other thing to consider is the gluten free food he is eating. Sensitive people have problems with cross contamination in some gluten free food. My son got sick from Amy's gluten free cheese pizza. I did a home test on it and found that it did contain a small amount of gluten. You may have changed something that you eat at home, or the manufacturer may have changed something, or maybe he just got more sensitive. My son used to eat Amy's pizzas all the time without problems. I have had problems with Lundberg rice chips, nut thins, lesser evil snacks, Kind bars, pretty well anything that is made in a facility that also processes wheat bothers me.

You might want to consider home testing of your food. It is expensive, but better than being sick all the time. The test I use is called EZ Gluten and is made my Elisa technologies. www.elisa-tek.com. You can get a pack of 10 for $110. I have no financial interest in the company.

You could put a list of the foods he eats on a post and the more sensitive people could tell you if it might be a problem. You can also search them on this site and see if anyone has complained about it. I do that with every new thing I try.

This diet takes a lot of figuring out. Keep it up.

Did you try AXID for nausea? It is a reflux medication. Nothing worked very well for my son, but that one seemed to do a bit.

Some extremely sensitive people can't eat any processed foods. They grind their own grain and bring their own food to restaurants. You son might be in this category. I hope not.

[theclutterhouse]

Hi, thanks so much for getting back to us. We have 4 dogs and they do sleep with the dogs. I don't allow the food near them, although they do feed them at times. I'm very strict about washing hands after they have done that. Lately I have put an end to them feeding the animals.

I have contacted the schools and have actually met with each teacher, nurse, principal etc concerning the situation. I have also talked to the students so that they know that this is very serious. My oldest son is pulled from class when there is any type of cooking and directed to another room.

Our home is close to 100% gluten free. My husband and son have their bread and cereal and that is it. It's not kept near our food. They have their own toaster etc. I don't even allow them to use the same dishes. Also, they have their own butter etc. I have gone to 100% gluten-free cooking for everyone. I don't want any cross contamination and the 2 meals each time was too hard.

As for the art supplies, that I will check. What about chalk?

Our tootpaste is gluten-free. I asked our GI specialist about shampoos and he said that is not a problem, I think I need to check now!

We have checked all meds with the pharmacist. Honestly, I try to only buy items that say gluten-free on them. The items that don't say gluten-free on them that I serve on constant basis is the meat (which is organic or as close to it as possible), potatoes, rice, and milk. We DO NOT go out to eat at all. I don't want to take the chance.

I have read many times about the airborne issues. Heres my concerns and thoughts. Our son and daughter did great after school ended and over the summer. They also did great for the first 8-10 weeks of this new school year. It was around Oct of 2008 when the weather changed and the school put their heating system on that both of them started showing the same symptoms as before. My thoughts are this, the heating goes throughout the entire school, including the cafeteria, cooking rooms, labs, art rooms, etc. Any contaminates in the air could potentially get into the heating system and be spread everywhere. Some doctors say that breathing enough over time would make you sick, others say no. There is cooking everyday especially in my son's school. It's almost on every floor. Does anyone have any thoughts on this?

Right now, my son's small intestines are severely damaged again. My daughter is having issues with her stomache, glands, and a lymph node in her neck. It's very serious and my husband and I are quite honestly scared at this point. Any help, suggestions etc. would be gratefully appreciated.

Thanks so much,

John and Andrea

(theclutterhouse)

[missy'smom]

Even products that are labeled gluten-free can be problematic for some, especially if they are consumed often or many such products are consumed. But we can still react with just one serving. It is wise to check to see if they are manufactured on shared lines. Many eat the Ancient Harvest Quinoa flakes but I react to them. They are labled gluten-free and tested to be under 5ppm and lines are cleaned according to allergen control procedures etc. But they are still manufactured on lines/equipment that is also used for gluten-containing products/ingredients. The whole-grain quinoa is manufactured in a separate facility that does not manufacture with gluten. Call the companies and ask them about things like this, if you haven't already. I used to think I could eat the Lundberg BBQ chips but after not consuming many products for a few months due to reasons other than celiac disease, I bought some again and reacted with the usual glutening symptoms. The excessive faitigue the next day and D gave it away. So they're off the list of things that I can eat.

I would switch the pet food over to gluten-free pet food. There have been many posts here with brands. You can always start a new post. Our cats are gluten-free and many vets are familiar with the effects of gluten on pets-ours was more informed than our son's ped. is!

I have been slow to jump on the switch your personal care products bandwagon but I am switching now. My hair started breaking off where I was applying a new product that I had purchased and while I can't be 100% sure that it's gluten related, I checked the product and realized that it contained 2 wheat ingedients as did another product and my shampoo and conditioner, so it's time. I'm in the process of switching/checking kiddos stuff too because he's less careful. I was always very careful so I thought I could get away with it. I bought more expensive products, used them judiciously and washed my hands alot, but now I think of how much wheat residue I was potentially spreading around and even being a good handwasher, how much my fingers end up on food or even touching my mouth-not good.

[GFinDC]

Hi Clutterhouse,

I wonder if they are drinking sodas at school? I react to coca cola, and I don't know why really, Pepsi doesn't bother me. But I only have it once in a while too, not very often or every day like kids tend to do.

You might want to look at milk as a possible problem. Many celiacs are lactose intolerant, and can't digest the milk sugar lactose. Also some react to milk casein, the protein.

Also it might be worthwhile to check into DPP-4 (or DPP-IV), which seems to help me in mild cross contamination situations.

If they are eating candy at school that might be a problem also. Some schools have candy machines sitting around these days. It might be helpful to pack some gluten-free cookies for them to snack on.

The school might be able to install allergen rated air filters in the heating system, if they don't have them already. That would probably be a good idea for all the children to help with hay fever as well.

Any medicines/vitamins they are taking need to be gluten-free also.

[pookie91260]

Another thing to watch in school is cross contamination. Does he sit in a lunch room and share a table? Even thought the tables are wiped down, they are really not sanitized and could still have traces of gluten. I am lactose intolerant as well, and have a sensitivity to red meat, or anything fatty-such as pork. some celiancs have negative reactions to soy. you may want to check all that as well. I see some posters hav mentioned other things, also be wary of vitamins and toothpaste.

[JennyC]

You have gotten so much wonderful advice already. I thought that I would add that many children, including my son, have been getting sick from Wellshire products that are labeled gluten free. They make the dino bites chicken nuggets and a brand of corndogs that have been making kids sick.

I would also get gluten free dog food, hygiene items, and check the art supplies that your son uses at school. Nearly everything that Crayola make is gluten free, except Playdough. Also maybe talk to your son about cross contamination in the lunch room. One mom in our ROCK group sends a little place mat to school with her daughter, which I think is a great idea!

[theclutterhouse]

Hello everyone, all the information coming in is so very helpful. I am going to check into the gluten-free dog food. That was one thing that we did think could be the problem. If anyone has some brand names, please let me know. As for anything they are taking by mouth, they do not eat or drink anything unless I have sent it with them or the teacher has been given it from me. We don't drink soda although because of the situation we have gingerale that is gluten-free on hand to settle the upset stomach. The kids are so good with this. I think because my son was so close to death that they know it's nothing to mess around with. I have not allowed my daughter to go to a friends house because she is still young and alot of her issues have been breathing. I'm terrified of the cross contamination. My son did go to a friends house twice. The father was aware of the situation. I packed all of the food & drinks, made all of the meals ahead of time, I even sent his own dishes, utensils etc. If something needed to be warmed, I did it at home and delivered it. Honestly, I have basically put my two children in a bubble to protect them. I feel horrible!!!

I keep hearing how SO MANY gluten-free items still contain gluten. This angers me! I was under the assumption that if it is gluten-free iit is processed and packaged in a facility that is gluten-free. I have read on many labels the warnings that the product was processed or packaged in a facility containing wheat. We stay right away from them because of the possibility of the cross contamination. We do a lot of our shopping at Wegmans. I have contacted management, dietary etc. and they reassured me that if it has the G symbol stating that it is gluten-free, it is gluten-free and is processed and packaged in a gluten-free facility. The items that have no gluten in them and aren't marked is because that can't 100% say they haven't been cross contaminated.

Also, has anyone heard of going to a Chiropractor for Celiacs? A friend of ours whose family has Celiacs goes and the doctor has found and fixed more than the family doctor and GI did and/or could. They feel great, no problems. The doctor has not accepted new patients in years but thankfully after hearing our story, my son has an appointment Feb 12th. Please let me know your thoughts on this and any questions or areas I should have him address.

Thank you again to everyone who has responded and all the advice. Like I said before, anything and everything is a help. Sometimes the little things cause the biggest problems. Also, to the mom whose son bites his nails, my son has a horrible problem with that. Thank you, we will try to halt that immediately!!!!

Not that we are thankful we aren't alone because that would mean we are happy someone else is suffering. It's just nice to know you aren't alone and people like all of you do care and are willing to help in anyway possible.

Thank you from the bottom of our hearts,

John & Andrea

(theclutterhouse)

[missy'smom]

Lately I have heard that there are chiropractors offering "cures" for celiac disease through acupuncture. I believe alternative medicine has alot to offer but whenever I hear things like that I check with places like the national celiac disease organizations(GIG, CSA etc.) and hospitals that have nationally recogized celiac disease centers(Columbia in NYC etc.). I believe that if such things are effective or even promising, they will let us know.

It is advisable to read labels and call the manufacturers directly and do our homework. I was in Costco today and saw some crackers that had gluten-free printed on the box, read the ingredients, this was looking good! all natural gluten-free, simple ingredients, until I noticed elsewhere on the label that it said "contains less than 100ppm gluten! What! To my knowledge there is no standard definition to what the words gluten-free mean. Products can change their formulas too so it pays to read those labels. As celiac disease is more widely recognized, there are more things available to us but we have to be careful about it because some are just misinformed and some just want to profit-both manufactuers and those in health related businesses. We have called manufacturers on the cell phone from the store and I know others here have too. It's a little embarrasing but it can be done discretely. Just keep in mind that this only works on weekdays.

[Mike M]

"I am going to check into the gluten-free dog food. That was one thing that we did think could be the problem. If anyone has some brand names, please let me know."

Science Diet sensitive skin (this is important that it is the sensitive skin brand of Science Diet) is the only dry dog food that I have found to be almost totally gluten free. It does have a very minor amount (less than 10 parts per million via an ELISA gluten test kit). This is what we use and I am extremely sensitive to gluten and oats.

"I keep hearing how SO MANY gluten-free items still contain gluten. This angers me! I was under the assumption that if it is gluten-free it is processed and packaged in a facility that is gluten-free".

And so didn't I and many others. It is disgusting to learn that a very large percentage of items marked gluten free do indeed contain gluten and many times, very large amounts of gluten, far more gluten than "normal" products with no gluten listed in the ingredients, and also not marked gluten free. Soap was getting me glutened for a couple of months before figuring it out. When washing the face it is inevitable it will get in the corners of the mouth and it does get washed down eventually. Doing this everyday adds up to way to much gluten exposure if sensitive. Dove and Ivory are at last check gluten free. Crest toothpaste-cavity protection cool mint gel or multicare whitening tested negative. Johnson baby shampoo is another of many that are also gluten free. hope this helps, Mike

[DreamWalker]

Oh man nail biting is such an easy way for me to wind up ingesting gluten. When October came around and both your kids became ill, did their schedules at school change at all? Did they take any different classes? One of my slip ups was sharing a computer/keyboard with a boy who was eating crackers (and spreading crumbs everywhere.) I thought I was being safe by wiping down the keyboard with my alcohol wipes but a few hours later I was gnawing on my fingernails and accidentally glutened myself. The only thing I could think of was the crumbs found their way between the keys and I missed them with my wipes. Also, it's probably a good idea for your son to cut his nails and file them down so he isn't tempted. Even when I wash my hands after handling something with gluten in it, it can get stuck in your fingernails and later be ingested. Another thing, if your kids have a habit of reading in the cafeteria or a table where there's a potential for crumbs/contamination it would be a good idea to wipe the covers of the books afterward. It's really easy especially for a kid to put their hand in their mouth absentmindedly. Well, at least that has been a problem with me and heck I'm grown. I'm sorry to hear they've had so many struggles integrating at school. It's tough to feel so excluded because of health. Hopefully, you get to the bottom of what's making them ill and they can resume school without experience a relapse in symptoms.

[tarnalberry]

Hello everyone, all the information coming in is so very helpful. I am going to check into the gluten-free dog food. That was one thing that we did think could be the problem. If anyone has some brand names, please let me know.

There are actually quite a few gluten free dog foods, but you won't find them in most grocery stores. Of course, you won't find a dog food that's *GOOD* for your dog in most grocery stores... And grains are not something that the majority of dogs need. (Caveat: every dog is individual. But, by nature, wild dogs/wolves don't eat grains, unless it's in the stomach of whatever they've managed to kill.)

Some gluten free dog foods:

Evo (Natura)

Instinct (Nature's Variety)

Orijen (Champion)

Wellness Core (Old Mother Hubbard)

Taste of the Wild (Diamond)

Go! and Now! (grain free varieties) (Petcurean)

Canidae (grain free varieties)

Barking at the Moon (Solid Gold)

Natural Balance Limited Ingredient Diets (Dick Van Patten's)

Before Grain (Merrick)

Natural (Nature's Logic)

Addiction (dried raw)

Honest Kitchen (dried raw)

We rotate my dog's food daily*. He's on Orijen fish, Instinct Duck, Instinct Rabbit, Natural Balance Venison & Sweet Potato, Wellness Core Original, and Taste of the Wild Ocean. Evo and Instinct Chicken didn't sit well with him, but we suspect that was due to the dairy (cottage cheese) that was in them. He also seems to not do well with particularly rich food (more than ~15% fat), but these are all individual by dog. He also seemed to just not like Addiction, even though I thought it smelled pretty good.

These foods tend to be a bit more expensive, but they also tend to be a bit higher calorie and nutrient dense. So you don't feed as much. (For my 35lb puppy, I feed about 3.5cups a day - an adult would get about 1.75-2cups/day - on most of these foods.)

*(yes, yes, insert "but isn't that bad for them" cries here. well, how would a dog eat in the wild? would they eat rabbit every day? during rabbit season, sure, they'd probably eat more rabbit than something else, but not every day. would the rabbits they kill have eaten the same things every day? no. but they need a transition period between foods, you say? well, perhaps they only need transitioning between foods when they've been on one food long enough that they are no longer producing digestive enzymes for other types of food - much the way many other mammals digestive systems work.)

[TES]

I am new at this, learning that there are so many ways of being contaminated..Just when I thought I had it figured out, I was glutened again. I have decided it was either the distilled vinegar in the gluten free mayo, the real vanilla in gluten free chocalte chips or my can opener, that I haven't been real good at cleaning. I get so sick, I don't even want to try either of these foods again, but sure miss anything made with distilled venegar or vanilla. There are so many products that are labeled gluten free but have distilled vinegar or vanilla in them. Does anyone else react to these? Or was it my can opener? How about jello, does the food coloring in it make it bad?

[maile]

I am new at this, learning that there are so many ways of being contaminated..Just when I thought I had it figured out, I was glutened again. I have decided it was either the distilled vinegar in the gluten free mayo, the real vanilla in gluten free chocalte chips or my can opener, that I haven't been real good at cleaning. I get so sick, I don't even want to try either of these foods again, but sure miss anything made with distilled venegar or vanilla. There are so many products that are labeled gluten free but have distilled vinegar or vanilla in them. Does anyone else react to these? Or was it my can opener? How about jello, does the food coloring in it make it bad?

Hi TES,

From what I've read we are not supposed to react to distilled vinegar (or distilled alcohol) but I am one of those who does react so I think it depends on each persons system.

for what it's worth, I would get a new can opener (just for yourself if you are in a shared household) and then "challenge" each of the products that you think might have glutened you but do it 1 at a time while eating a simple diet of foods that don't make you react but with about 5 days in between experiments. that way you have a better idea of which one (if any) you react to.

as for the Jello, I've seen numerous accounts where the red dye is associated with bad reactions in some children. but again, until you isolate your exposure to the food it will be hard to tell if that is the thing that made you feel bad.

good luck

[theclutterhouse]

Another thing to look into is art and craft supplies, things like glues and paint, clays etc. Pet foods are also another source of contamination. Airborne gluten is usually only a concern with things like flour in baking, that can take up to 2 days to settle. Has the school been notified about the celiac so the teachers can do all they can to keep them safe?

Does anyone know anything about chalk having gluten in it?

[Lisa]

Open Original Shared Link

I don't know when this listing has been updated, but it's a good base to follow. If it's inaccurate, it would err on the conservative side.

I don't believe that chalk should be an issue. But, then, I don't remember the subject ever coming up before.

[climbmtwhitney]

John and Andrea,

Here's an entirely different thought.....Gluten and Casein (milk) proteins are very similar. My doctor said that it's possible for the body to mistake the casein protein for gluten. Is that true? I'm not sure. But, I do know that my daughter, 10, gets the same reaction from both. She too gets a little dizzy and nauseous. She's also irritable and flys off the handle when she makes a silly mistake (like forgetting to bring her socks downstairs). She's also very distracted and sometimes disoriented (that's a scary one!) Her homework time doubles or triples. And, she gets the traditional stomach ache and/or headache and isn't hungry. We dairy tested her 2 weeks ago after not having it for almost 4 months hoping she could handle it. Same thing. I might as well have given her a donut! Whether dairy is causing damage in her intestines like the gluten does is unknown.

Perhaps if stopping the nail biting, switching dog foods & dog shampoos, etc. doesn't help, consider the diary.

I sure hope everyone's feeling well soon. It's so very hard when your kids are sick. So hard.

Best,

Jill

[Mike M]

"There are actually quite a few gluten free dog foods, but you won't find them in most grocery stores."

This is a major issue on these boards. People are told that these items are gluten free and they are not. I am sure it is done with the best intentions being in mind, however, this is serious business we are dealing with (a persons/families health) I have tested at least 3/4 of the dog foods listed on this post, they tested high positive for gluten via an ELISA gluten test kit by me. I even called and sent the test results to these companies to let them know. Not one of them do any testing. If I recall correctly, most of them sub contract out there dog food making. Just because there are no grains listed on the ingredients means nothing. Science Diet for sensitive skin is your best bet according to the tests that I have ran. FWIW Mike

[tarnalberry]

This is a major issue on these boards. People are told that these items are gluten free and they are not. I am sure it is done with the best intentions being in mind, however, this is serious business we are dealing with (a persons/families health) I have tested at least 3/4 of the dog foods listed on this post, they tested high positive for gluten via an ELISA gluten test kit by me. I even called and sent the test results to these companies to let them know. Not one of them do any testing. If I recall correctly, most of them sub contract out there dog food making. Just because there are no grains listed on the ingredients means nothing. Science Diet for sensitive skin is your best bet according to the tests that I have ran. FWIW Mike

Holy crap?!

Have you seen the ingredient list for that dog food? "Brewers rice, corn meal, corn gluten meal, chicken by-product meal, dried egg product, animal fat (preserved with mixed tocopherols), flaxseed, vegetable oil, natural flavor, dl-methionine, l-lysine, l-tryptophan, preserved with mixed tocopherols, citric acid and rosemary extract, beta-carotene, minerals [potassium chloride, dicalcium phosphate, salt, calcium carbonate, ferrous sulfate, zinc oxide, copper sulfate, manganous oxide, calcium iodate, sodium selenite], vitamins [choline chloride, vitamin A supplement, vitamin D3 supplement, vitamin E supplement, ascorbic acid (a source of vitamin C), niacin, thiamine, calcium pantothenate, pyridoxine hydrochloride, riboflavin, folic acid, biotin, vitamin B12 supplement]." The first four ingredients are ones I would never feed my dog - they don't need to be in any worthwhile pet food. Three of those four are waste products from food manufacturing! Ugh! (Yes, I'm particular. Feel free to mock. )

Could you please identify *which* brands/lines you tested? (Your tests may be just fine, but a random "I've tested half" isn't much information. It's a "be afraid of some things, but you don't know what things", even if it's fair to be afraid of particular things.)

And, if all else fails, make your pets' food. Then you know it's gluten free. Takes a little bit of research, but mostly takes a little bit of time.

[pele]

Hi John and Andrea

I read through your posts and the replies yesterday, and later on thought of something. Probably not what you want to hear or consider, but is it possible your chldren ARE cheating, and lying about it? The reason I ask is I once was very close to someone who was a juvenile diabetic. His mother was very concerned and controlling about his diet, and he repaid her love and devotion by sneaking off and eating Snickers and Three Musketeer bars whenever possible, a habit he retained for the rest of his life. He lied to his mother about it. I don't know what she could have done to prevent this short of locking him up or moving to the middle of nowhere. Children are seperate entities with their own minds. Defying parental authority is a normal part of childhood.

Anyway, I hope that you figure out what is going on and can make it better. Best wishes.

[dilettantesteph]

I am new at this, learning that there are so many ways of being contaminated..Just when I thought I had it figured out, I was glutened again. I have decided it was either the distilled vinegar in the gluten free mayo, the real vanilla in gluten free chocalte chips or my can opener, that I haven't been real good at cleaning. I get so sick, I don't even want to try either of these foods again, but sure miss anything made with distilled venegar or vanilla. There are so many products that are labeled gluten free but have distilled vinegar or vanilla in them. Does anyone else react to these? Or was it my can opener? How about jello, does the food coloring in it make it bad?

I think I react to distilled vinegar too, but I'm not sure. Just when I get better, I hate to try the product again to be sure.

[Welda Johnson]

Hi,

I certainly feel for you all, since you are working so hard to find out what is happening. I suffered from Celiac symptoms starting at age 8, and now at 64 I feel pretty good, but only because I drastically changed my lifestyle. Doctors in 1952 didn't seem to have a clue about why I kept wheezing with asthma, getting bronchial infections, later contracting pneumonia several times, and just plain being sick most of the time. Your story of working to solve your mystery reminds me very much of my journey with Celiac, and, sad to say, doctors never did really come up with the answers that worked for me.

At age 19 I was told I would be bedridden by the age of 25 if I didn't begin allergy shots, but taking those for 3 years didn't help at all. In my 30s I was still ill and started eliminating foods on my own, which proved that I was intolerant of all grains, and all milk and dairy. In my 40s I eliminated egg whites, and in my 50s yeast, casein, whey, maltodextrin, modified food starch, and msg. I diligently read labels before I eat any food. I take food with me when I know I'm going to be away from home. I only eat out at restaurants where I know I can tolerate the food. I think that the purer our systems become, the more sensitive we are, because lately I can't tolerate beef either, and I rarely eat chicken or turkey, because I find it hard to digest. I also eat my fruits in the morning, and never mix them with other foods. That has helped a lot where digestion is concerned.

Before I retired, I was an elementary school teacher, and I wanted to mention to you that it could be what your school is using to clean the carpets that may be causing problems. I once had to take my class outside after returning from a school vacation, because they had cleaned the carpets with something very powerful. For days I felt sick, and they finally re-shampooed the room, thank Heavens. Also, some of the older schools have serious mold problems, or problems with fumes coming through the heating or air conditioning systems. Have you made a general query of other parents or students, to see if anyone else is having problems? Maybe a generalized flyer, asking questions, would open up your eyes and that of other parents or students, who may not realize that the problem is affecting more than their own family.

Ever since I read your post a couple of days ago, I have been thinking of you, and please know that those of us who come to this site want so much for you to find the answers that you need. We, too, have been on this quest to learn what is bothering us, and, together, perhaps we can help others. I wish you the best. welda@att.net

[Mike M]

Holy crap?!

Have you seen the ingredient list for that dog food? "Brewers rice, corn meal, corn gluten meal, chicken by-product meal, dried egg product, animal fat (preserved with mixed tocopherols), flaxseed, vegetable oil, natural flavor, dl-methionine, l-lysine, l-tryptophan, preserved with mixed tocopherols, citric acid and rosemary extract, beta-carotene, minerals [potassium chloride, dicalcium phosphate, salt, calcium carbonate, ferrous sulfate, zinc oxide, copper sulfate, manganous oxide, calcium iodate, sodium selenite], vitamins [choline chloride, vitamin A supplement, vitamin D3 supplement, vitamin E supplement, ascorbic acid (a source of vitamin C), niacin, thiamine, calcium pantothenate, pyridoxine hydrochloride, riboflavin, folic acid, biotin, vitamin B12 supplement]." The first four ingredients are ones I would never feed my dog - they don't need to be in any worthwhile pet food. Three of those four are waste products from food manufacturing! Ugh! (Yes, I'm particular. Feel free to mock. )

Could you please identify *which* brands/lines you tested? (Your tests may be just fine, but a random "I've tested half" isn't much information. It's a "be afraid of some things, but you don't know what things", even if it's fair to be afraid of particular things.)

And, if all else fails, make your pets' food. Then you know it's gluten free. Takes a little bit of research, but mostly takes a little bit of time.

Hello Tarnelberry, sorry for the delay in response....The ones that are posted below are the ones that I did not test on your posted list. All the others on your list I have tested. I went on a mission to find a gluten free dry dog food, focusing on the

"grain-less" brands for what I thought would be obvious (no gluten). It has not worked out so well as I still have not found one that is completely gluten free and at last count I have tested 15 brands. Science Diet sensitive skin just barely shows a slight positive. I am sensitive but seem to do fine feeding this. Our oldest Doberman will be 10 years old this year and has ate Science Diet for years (it was not the sensitive skin brand) and does just great, hangs right with our two other younger Dobermans. All the best, Mike

P.S. EVO canned Dog food tested negative if this helps. Might want to get a second job to pay for it if you have a large Dog!!! He He

Orijen (Champion)

Wellness Core (Old Mother Hubbard)

Addiction (dried raw)