Super Sensitive Teen

[jhuebner]

Hi,

New to this forum, Hi!

We have 2 now with Celiac Diagnosis in our house & keep thinking we've de-glutened the house!

My Wife and my 14 yr old son are the 2. My son's now 14, we've been doing full gluten free house for ~11 months now. We'd come to wits end last year when he'd missed 8wks of 8th grade in the 1st semester of school. Finally ended up at UIHC Pediatrics GI (University of Iowa Hospitals & Clinics). He had labs "off the scale" & a very "positive" endoscopy! He's 14, & did have one admitted "binge" over the summer, but is really trying on keeping gluten-free. Since January he's grown ~ 7 inches, so we know he's getting nutrients (he's a towering 72.5 inches now)!

My wife was diagnosed this summer too, she was severely anemic (under 10) and no more McDonald's for her either now, besides the totally gluten-free we'd been doing at home. Her TTG went from ~100's to "teens" in a couple months, and her Iron went from single digits to 12's. So we know we're getting the gluten out of the house.

BUT (yes it was coming) ... the boy is still missing huge amounts of school w/ symptoms, his immune system is a mess. He's been back in hospital 3x in past 4 weeks (including a 3day inpatient) with dehydration! His last endoscopy was a mess yet, his TTG is still High, but measurable in the "hundreds" ... WTF?

No Wheat lives in our house (OK I found another hidden/missed bit today - chicken bouillon) grrrrr... not beef, just chicken.

Only make home made bread (in new bread machine) using Bob's Red Mill mixes... (expensive). Only use gluten-free ingredients in food. Only boxed stuff is marked gluten-free, else it's home made. (did I mention I'm an at home dad, god bless unemployment) ... ugggg!

Rice noodles, Rice, potatoes, Quinoa, Amaranth, Quinoa noodles, all great stuff & all the starch we're using!

I can't keep this kid in school, the Ped's GI guy is perplexed?

Tips, ideas, pointers????

... "frustrated" in Iowa

Thank you!

JLH

[Roda]

Wow it sounds like he is having a hard time. Hopefully you will get some relief. Here is one possible idea for you to look at. Maybe he is having problems with packaged gluten free products. Some celiacs are even sensitive to the low levels to react. Another possible thing to consider is that he could be sensitive to gluten free oats. Bob's Red Mill is cross contaminated with gluten free oats and some people react. I had a year+ after gluten free that I felt good. I had tried gluten free oats at the 7 month mark and reacted so bad. I never ate them again but continued to eat other products from the same company. For 8 months I was miserable starting Jan. 2010. It came to a point that the doctor wanted to put me on steriods. I refused and decided I was going to do a further elimination(I did take creon for a few months also). That's when I realized I was reacting to the gluten free products. It wasn't the gluten CC but I was reacting to the oat CC. I've had to get rid of all the Bob's products. It sucked to because they are readily available. I now use Ener G brands of flours. I've had to make many calls to companies and ask about oat CC.

[GFreeMO]

I would go 100% all natural whole foods with nothing added and NO processed gluten free foods at all. I would stay away from all of the flours, pastas etc. Please check out the super sensitive celiac section of this forum. Several of us, myself included are very sensitive and have to avoid all of these packaged things, flours etc.

[pricklypear1971]

Perhaps he has secondary intolerances? Milk is the #1 offender, and soy - and both can leave damage on an endoscopy if there's an intolerance. But if his blood work is high that's less likely than gluten. Have his numbers gone up or just not decreased?

And perhaps he's getting into gluten when he's out of the house?

[stanleymonkey]

is it dried or fresh rice noodles? My husbands family is Chinese and I know that they use flour with fresh rice noodles to dust the board the are made on to stop them sticking. Dried rice noodles are usually okay.

[Di2011]

Xanthan gum is a common ingredient in many gluten free foods, and bathroom/personal products like toothpaste. Due to my persistent and chronic (head to ankle) DH I have had to remove xanthan gum. I have reacted it to it topically and through ingestion.

Check out all the products your son uses - deodorent, hair, laundry/cleaning etc. If you aren't familiar with the wheat derived chemical/additives then you probably should start today. If you don't know about maltodextrin, for example, google it. If you wonder what e415 is that gluten free product, google it.

Anything you read where you see starch is possibly wheat.

Open Original Shared Link

Start contacting producers and if you get a half hearted, questionable response or your parental "gut" tells you it isn't right then avoid.

From October I have stuck to bare basics - rice, rice noodles (dry and made in Thailand), lots of meat (all and any cuts including fat for calories) and veg/fruit, nuts. And agree with other posters here that you need to go basic so that you can start adding ingredients one by one to test reaction. Otherwise, like me, you may never have an answer to what continues to affect your son. Add ONE product and see what happens. A day or two later add it again, next day add it. Thats my three times rule.

I wish you and your family the very best. Keep getting on here for any questions, concerns or successes you might have. We need more dads on this forum.

[domesticactivist]

We had to get rid of everything packaged and found that when we stopped using other grains that cc symptoms went away. (we do the GAPS diet now. There is lots about it on my web site and posted here as well)

Usually when my 11 year old gets glutened now it is from being around others who are eating gluten. A school environment is full of gluten on all surfaces. If he's not practically compulsive about washing hands that could be a big source of the problem.

Also, is it possible school isn't the best choice for him? We love homeschooling and there are still lots of ways for the kids to have a social life. We find that working with occasional camps and classes a couple days a week is safer and more fun than and educational than a school environment.

[TBelle]

It's very hard to watch your family keep getting sick. We have 3 coeliacs in my house (3 of my 4 children) and when my oldest was diagnosed 13 years ago it took about 18 months where he would constantly get sick. I believe it was family members who we lived with contaminating everything (Not saying this is what's happening to you)We moved out and he finally settled and only got sick again when he started "sneaking" food.

Another added note is it might be an idea to go lactose free (or dairy free) for a while. A lot of coeliacs become lactose intollerant because of all the damage that has been done. So give the damage time to heal and try them on lactose again.

I wish you all the best and I hope he improves from now on

[dilettantesteph]

At least he's not in high school yet. You have a year to get this figured out before the grades get on his transcript for college. My son missed almost a third of the year when he was first diagnosed (5th grade). It was very hard. He is super sensitive and reacts to all sorts of things which we were assured were 100% gluten free and completely safe. It was difficult to figure it all out. Fellow super sensitives were very helpful. Unfortunately, there are quite a few who make suggestions as super sensitives, who aren't nearly as super sensitive as we are. It takes awhile to figure out who is who.

You could go to all non processed foods, then wait till symptoms disappear and then add back the processed things one per week. When the offending items are removed you should notice some improvement by the next day. The improvement might be pretty small if he is very sick. You could also remove things a few at a time, but that is a slower way to go than to remove any possibilities at the beginning. It means a lot more cooking though.

It may be better to avoid things made on lines or facilities with wheat containing things. It may be better to check over your rice for offending grains and to wash it before cooking. Be sure to check things like toiletries, dish soaps, and supplements.

Check out the super sensitive section in here. Don't panic about how sensitive some of us are. There is a whole spectrum of super sensitivity, and it is likely that you son isn't at the top.

Good luck. You are a good father to be acting on this so thoroughly.

[Fimac]

Hi,

I have a 14 year old son and the only answer we have found to missing lots of school was to remove him from the school buildings. He is now going to a virtual school for high school. There was some much gluten around the school building that he was vomiting every day.

Look into what your state offers in the way of virtual schooling. the one my son uses has virtual classroom so they chat with their fellow class mates and have classes together.

[GFinDC]

Check all the vitamin pills or meds he takes for gluten also. Some vitamin pills have wheat grass juice or barley in them. Not so good for us.

Pet food can be a problem too. Pets aren't too careful about where they drop crumbs or who they lick after eating gluteney foods.

A simple whole foods diet and nothing processed, and no starches is a good idea. And dairy and soy are no good for some of us.

Tea and coffee etc can have gluten also.

If he is eating snacks or candy when out of the house that could be a problem. His friends may encourage him to eat things like that and it may be hard to resist for a youngster.

If he has a girlfriend who eats gluten and kisses her she could make him sick. Probably best to tell him no girlfriend until after college. Ok, kidding on that last one. . But kissing a gluten eater should only be done after they brush and rinse the vileness out of their mouth. Or the beer etc. We'll get this kid straightened out yet!

[kareng]

Looking at his age, I would definitely check if he is cheating or eating something he thinks is gluten-free but isn't. One example that comes up a lot are Rice Krispy Treats or corn flakes.

Check the other stuff, too.

[IrishHeart]

And perhaps he's getting into gluten when he's out of the house?

Was going to suggest this myself. Maybe he has something at a friend's house? Just once and a while and does not think it's a big deal? I know if I were his age, I'd be tempted.

[Darn210]

The fact that his lab numbers were off the charts and at least now are measureable is good. It can take a while for (and I mean a long while) for numbers and symptoms to resolve. My daughter took about 10 months to become symptom free and she did not have the extreme symptoms/loss of school time that your son had.

You've got a lot of good advice on places to check for hidden gluten. I don't have anything to add there.

That being said . . . my first thought is . . . he's cheating when out of the house . . . I'm sorry, that's just what I think when you say "14 year old" plus the fact that there was a gluten binge this past summer.

If it IS a cheating thing (or if you think it MIGHT be a cheating thing), what I might suggest is to help your son research mainstream foods that would be OK for him when he is out and about with his friends. Foods that don't look different. He can have a frosty at Wendy's. If he calls ahead of time (if he doesn't want to ask in front of his friends) and finds out if they have a dedicated fryer, he can have the fries at Wendy's. Snickers are OK. Fritos are OK. Stuff like that. No, it's not great food and you will be responsible for getting the good stuff in him when he's at home, but if it's "wanting to fit in with the rest of the guys" then get him (he does need to buy-in) to figure out how to do it without blowing the gluten-free part of the diet.

You might want to take a look to see if you notice a relationship between events out with friends followed by symptoms and days out of school.

I hope I didn't offend you by assuming your son is cheating. I just thought it was worth discussing.

[T.H.]

How mature is your son? Is he dating? If he is, kissing a girlfriend who is a gluten-eater can gluten him as well, or one who is using lipstick with gluten on her lips (jeesh...do they even WEAR lipstick at this age? I am far too old, LOL).

Could be worth looking at any products he might use on his lips at this time of year, too, like chapstick-like products. Some other lip products are all right, and some can contain gluten, you just have to check it out.

[Gemini]

Hi,

New to this forum, Hi!

We have 2 now with Celiac Diagnosis in our house & keep thinking we've de-glutened the house!

My Wife and my 14 yr old son are the 2. My son's now 14, we've been doing full gluten free house for ~11 months now. We'd come to wits end last year when he'd missed 8wks of 8th grade in the 1st semester of school. Finally ended up at UIHC Pediatrics GI (University of Iowa Hospitals & Clinics). He had labs "off the scale" & a very "positive" endoscopy! He's 14, & did have one admitted "binge" over the summer, but is really trying on keeping gluten-free. Since January he's grown ~ 7 inches, so we know he's getting nutrients (he's a towering 72.5 inches now)!

My wife was diagnosed this summer too, she was severely anemic (under 10) and no more McDonald's for her either now, besides the totally gluten-free we'd been doing at home. Her TTG went from ~100's to "teens" in a couple months, and her Iron went from single digits to 12's. So we know we're getting the gluten out of the house.

BUT (yes it was coming) ... the boy is still missing huge amounts of school w/ symptoms, his immune system is a mess. He's been back in hospital 3x in past 4 weeks (including a 3day inpatient) with dehydration! His last endoscopy was a mess yet, his TTG is still High, but measurable in the "hundreds" ... WTF?

No Wheat lives in our house (OK I found another hidden/missed bit today - chicken bouillon) grrrrr... not beef, just chicken.

Only make home made bread (in new bread machine) using Bob's Red Mill mixes... (expensive). Only use gluten-free ingredients in food. Only boxed stuff is marked gluten-free, else it's home made. (did I mention I'm an at home dad, god bless unemployment) ... ugggg!

Rice noodles, Rice, potatoes, Quinoa, Amaranth, Quinoa noodles, all great stuff & all the starch we're using!

I can't keep this kid in school, the Ped's GI guy is perplexed?

Tips, ideas, pointers????

... "frustrated" in Iowa

Thank you!

JLH

Welcome JLH!

I'll add my 2 cents worth of advice, for all its worth! I have pointed this out many times before and yet still see references to it on this forum....

you do not check for dietary compliance by testing tTg alone. Has your son's physician done a full Celiac panel on re-test? Because if they did not, there is no way to tell if your son is ingesting gluten from a tTg test alone. Elevated tTg can be caused by other autoimmune problems which are strongly associated with Celiac. They need to run the AGA IgA/IgG or the newer Demeadiated Gliadin Protein test. These are the 2 which test for dietary compliance and, as your son was diagnosed first via blood work, it will reliably show if he is ingesting gluten or not on re-test. Not everyone can do this because some never trip an antibody test. I was diagnosed via blood work and it was sky high at diagnosis so I always re-test with one of these 2 to make sure I am not ingesting any.....although it really doesn't take take many brain cells to figure that out! I am very sensitive to gluten and always know when I have sustained a hit. The tTg only references to villi damage and that can also be caused by other factors, one of which is lactose intolerance. This is extremely common in Celiacs, as I can personally attest to, and can delay healing significantly.

Having said all that, I would guess that your son is most likely ingesting gluten because, after all, he is only 14 and following this diet with strict compliance in that age group can be daunting. Who can blame him if he cheats? He is surrounded by gluten on a daily basis and it will take awhile for him to learn the ropes and to realize how important it is for him to be compliant. It's hard enough for many adults to accept this, never mind a 14 year old. He may be lying to you about it because he fears he will be in trouble for admitting that to you. Totally normal behavior but one that you have to get to the bottom of.

As far as super sensitivity goes, I have a few thoughts on that....I am pretty darn sensitive but this is what Celiac is all about. The longer you are gluten-free, the more sensitive you become. It happens to all of us. It would be the same if you gave up sugar...I have done that in the past and let me tell you, when you have that first bite of sugar after abstaining for a while, it's like taking speed. You won't sleep all night. Same with gluten....you will react in a more pronounced way because your system is not used to it. The one thing you have to be careful of is developing a fear of food and becoming paranoid about the whole thing. Unless a person has an additional food allergy or intolerance, which is pretty common, most mainstream foods made in dedicated facilities are perfectly safe for about 99% of all Celiacs out there. If they weren't, people wouldn't recover. The vast majority of Celiacs who put effort into this recover well. You may discover another food issue along the way, as I did with dairy, but you can fully expect your son to recover if he is compliant with the diet. He's young...he'll heal.

I wouldn't put him on a totally whole foods diet at this point because he may not need to. You need to find out if he is cheating first. I would find a few good items he really likes and let him have those or he will totally rebel and not follow the diet. I ate gluten-free bread when first diagnosed because I was so thin, I needed the calories. I healed fine, which was great considering I was 46 years old. The bread did not hinder my recovery, as some people so mistakenly believe. There are many Celiac myths out there so keep asking questions to avoid erroneous advice.

Follow the guidelines set up by reputable medical people on what to eat or what not to eat and go from there. You may hear that gluten-free processed foods are unsafe and, quite frankly, some are. However, I have never gotten sick from anything made in a dedicated facility so that's a good place to start. Shared facilities are another story but some do a good job of cleaning the lines and you may find your son can tolerate them once healed. Only you can figure that out from experience. Too many people label themselves super sensitive when that may not be the case. There are other medical conditions and food intolerances that Celiacs suffer from which can go undetected and can be the cause of continuing illness. I still think your son may be eating gluten away from home and I hope you will not be offended I said that. He's a kid, he's upset about this and his friends may be contributing to his cheating. I can't say I wouldn't have cheated when I was 14 either!

Oh yeah....the doorknob thing. Unless your son licks a doorknob after someone who ate a sandwich grabs the thing, I wouldn't even entertain this as credible. Remember, you have to ingest gluten for it to be a problem and being glutened from a door knob is just plain crazy talk. There is a lot of gluten out there in the world and we can navigate it successfully without having to live in a bubble. I can guarantee you that many Celiacs handle door knobs on a daily basis without it being an issue.

Exercise good common sense and you'll do fine!

I wish you luck and hope your son is on the road to recovery soon. Have the doc do a full panel or at least those 2 tests I mentioned because if your son is cheating on a regular basis, it will show there. I would also have him screened for all those other autoimmune problems that go hand in hand with Celiac because that could be the reason for his elevated tTg also. Use process of elimination and you'll figure this out.

[salexander421]

I'm so sorry you are going through this! It's been hard enough with two toddlers I can't even imagine how hard it must be with a teenager who is having to change the whole way he thinks about food.

I think you have to approach teenagers with an understanding way and not a judgmental way. If they think you are just going to get mad they may not tell you if they accidentally or purposefully ingest gluten. You need to be upfront with him and tell him that this is going to be super challenging but that you know he can do it and that you are there to support him. Make sure he knows that you love him and just want him to feel better. I don't have any references for you but I'm sure there are books out there that are written for teens dealing with celiac, maybe he could read something like that. Also, I would probably check to see if there is a support group in your area so he can see that he's not alone in this.

As far as sensitivity goes it varies widely, that is why you have some people with celiac who have virtually no outward symptoms and then you have those who can barely look at gluten without getting sick. And yes, some people can touch a doorknob and then touch their own food and get sick. Although, I would not assume this is your son until you have exhausted every avenue. He will fall somewhere on this spectrum but it will take time to figure that all out, right now you just need to focus on getting him as close to 100% gluten free as possible so that he can heal.

The best way to do this is through a wholefoods diet, contrary to what some might say. Most packaged gluten free foods are going to have a small level of gluten in them. While most people with celiac will not react to this level there are some that do. And if you're consuming a lot of prepackaged gluten free foods those low levels are going to add up. Read Breaking the Vicious Cycle if you get a chance. It's a great book and deals with healing your gut.

I would try removing dairy from his diet until he heals. There are so many yummy dairy alternatives out there...chocolate almond milk anyone!?

Get him on a good gluten and dairy free probiotic. I have heard some experts say that people with gluten intolerance should be on probiotics for the rest of their lives.

Oh, about the Bob's Red Mill products I would steer clear of those. We have had issues with so many of their products...obvious gluten reactions. Although they do test to, I think, 20ppm with flour this can really add up fast.

I don't really have any school advice since mine are still young and we plan to homeschool.

Cross contamination in the kitchen...have you replaced all your plastic and wood kitchen stuff? Anything porous can be an issue...cutting boards, spaghetti strainer, replace any nonstick pots and pans. Glass and stainless steal can be scrubbed really well. If you have cast iron you can run it through the self cleaning cycle in your oven and then re-season. Have you replaced your toaster? Wipe down everything really well. Replace any kitchen sponges. Vacuum out your drawers and cabinets where crumbs may be lurking. Wipe out your microwave. I really would attack your house like your trying to get rid of the flu or something

I hope this isn't too much info! I feel like it's better to attack it all full force so the healing can begin quicker and then when the symptoms have subsided you can start trying to loosen up a little. Everyone's different, this is just my approach and it works for me

Just keep asking questions!

[Gemini]

As far as sensitivity goes it varies widely, that is why you have some people with celiac who have virtually no outward symptoms and then you have those who can barely look at gluten without getting sick. And yes, some people can touch a doorknob and then touch their own food and get sick. Although, I would not assume this is your son until you have exhausted every avenue. He will fall somewhere on this spectrum but it will take time to figure that all out, right now you just need to focus on getting him as close to 100% gluten free as possible so that he can heal.

The best way to do this is through a wholefoods diet, contrary to what some might say. Most packaged gluten free foods are going to have a small level of gluten in them. While most people with celiac will not react to this level there are some that do. And if you're consuming a lot of prepackaged gluten free foods those low levels are going to add up. Read Breaking the Vicious Cycle if you get a chance. It's a great book and deals with healing your gut.

Nope...I have to disagree on this and feel it's important to do so because it's erroneous information that will confuse and create fear in the newly diagnosed. The doorknob thing....unless you have bad habits such as never washing your hands before you eat, touching a doorknob will not gluten you down the road. I have yet to see any reputable Celiac organization warn about this and I have read many, many books and papers on this disease. It borders on OCD behavior and not anything to worry about for Celiacs. I would think you would be far more worried about catching a flu virus or other bacterial illness from not washing and then eating your food with your hands. Gluten would be at the very bottom of that worry list.

As far as eating processed foods while healing, this is another myth that is overblown by the overly anxious. I, like many others on this forum, nearly died from this disease....it was that close. I ate some processed foods but did not overdo the amounts. Anyone without Celiac should not consume too much processed foods. However, some of us are the skinny Celiacs and need the calories and fat. Eating certified gluten-free bread did not hinder my recovery in any way and I am also intolerant of dairy. I think it prudent to not withdraw too much from a 14 year old's diet or they will rebel and hate having Celiac. We are talking certified gluten-free food...not something to worry about. If there were that much gluten in these foods, no one would recover. If you choose not eat them, that's fine but do not create unnecessary fear in others who are trying to figure out what to do. Good luck trying to limit a 14 year old to a whole foods diet only...that's a sure way to create a cheater.

Oh, about the Bob's Red Mill products I would steer clear of those. We have had issues with so many of their products...obvious gluten reactions. Although they do test to, I think, 20ppm with flour this can really add up fast.

Stop bashing dedicated facilities that are trying to make our lives easier and offer variety to the gluten-free diet. I know a few people have made remarks about Bob's but that does not mean they had a gluten reaction. The vast majority of people I know who use Bob's products have no problems and they are a dedicated facility. I know this does not mean perfection but it's as good as it gets for gluten-free products. There are many other reasons why people have reactions to flours.

[IrishHeart]

I think GEMINI has made several excellent suggestions for the OP to consider as he figures out what's going on with his son.

Hopefully, Dad will report back to us soon and let us know what he discovers.

[domesticactivist]

Bobs red mill has a dedicated facility but processes gluten free oats, which is why people who are cross reactive to oats have a problem.

I have to say we started off with gemini's approach and it wasn't enough. Whole foods and care with cc have been very important to our son.

Whenever I relax he gets glutened. I let him eat off a handwashed dish (her sponge) at a friend's house... That got him. When he forgets to wash his hands at my mom's that gets him. When he eats in a cafteria setting with crumby tables and kids, that gets him.

As for the notion that he's 14 so he must be cheating, well, it's possible but no guarantee. I'm curious about how he feels about all this. At 14 it's up to him to make his diet work. I hope he will be presented with the evidence here and then be supported in his own reasonable decisions so long as they are not completely self destructive. He probably would like to stay out of the hospital and get to feel good and hang out with his friends. Many 14 year olds are very careful with their diets for all sorts of reasons.

[domesticactivist]

Oh and you can read about our experience on the blog linked from my profile at Our Story and Going 100% Gluten Free

[IrishHeart]

At 14 it's up to him to make his diet work. I hope he will be presented with the evidence here and then be supported in his own reasonable decisions so long as they are not completely self destructive. He probably would like to stay out of the hospital and get to feel good and hang out with his friends. Many 14 year olds are very careful with their diets for all sorts of reasons.

Regarding this young man's responsibilities for himself--Well said, DA!!

[weluvgators]

As a mother of super sensitive children, having integrated two of them into the school system, I feel it is very important to review hand washing procedures with your child. We have Individual Health Care Plans for each of them to review with all necessary parties that handwashing RIGHT before eating is critical to their health and well being. Our health care plans also identify the other necessary accommodations that we have found necessary to keep our children safe in school. And it is shocking to see how hand washing before and after eating are discouraged in our schools.

I would be very careful in assuming that your child is "cheating", as you will need to develop a solid partnership that is proactive with excellent sleuthing skills. I know all to well how critical it becomes when you are just trying to keep your kid from another hospitalization. There are so many, many places for gluten to enter the equation, and the ultimate decisions will be your son's for how he wants to navigate the hazards. We have been extremely grateful for the wonderful and insightful experiences and advice shared by the extreme super sensitives. While we may not apply the most extreme measures, we have found the experience base from those that have to go the extra mile to broaden our abilities to more safely navigate our gluten filled world. We also made tremendous strides by adopting home testing of our "gluten free" foods. We have found it necessary to fully support our children in adopting a whole foods diet.

We have found that working with our doctors as we navigate our issues has been critical. We have continued to watch and monitor for other complicating conditions, but we have yet to turn up a "something else" to explain or reduce our gluten hypersensitivity. . . However, we continue to discuss and monitor any concerns that arise, as even our doctors are perplexed at the complexity of our exquisite gluten sensitivity.

Good luck! Please do let your son know that he is not alone! Have you found any local support groups? My kids love meeting other gluten free kids!!

[Gemini]

Bobs red mill has a dedicated facility but processes gluten free oats, which is why people who are cross reactive to oats have a problem.

I have to say we started off with gemini's approach and it wasn't enough. Whole foods and care with cc have been very important to our son.

Whenever I relax he gets glutened. I let him eat off a handwashed dish (her sponge) at a friend's house... That got him. When he forgets to wash his hands at my mom's that gets him. When he eats in a cafteria setting with crumby tables and kids, that gets him.

As for the notion that he's 14 so he must be cheating, well, it's possible but no guarantee. I'm curious about how he feels about all this. At 14 it's up to him to make his diet work. I hope he will be presented with the evidence here and then be supported in his own reasonable decisions so long as they are not completely self destructive. He probably would like to stay out of the hospital and get to feel good and hang out with his friends. Many 14 year olds are very careful with their diets for all sorts of reasons.

The cross reaction from gluten-free oats is not a gluten issue....its a cross reaction and many Celiacs can tolerate gluten-free oats well. Protein structures may be similar but it's not wheat protein and only a small percentage of people react this way. The differences should be distinguished when posting to a forum so new Celiacs will not think you can have a gluten reaction from oats. Oats are loaded with nutrients and people should be encouraged to include them in their diet for the rich fiber source that they are. Only then will you learn if you have a problem but from what I have read and seen, the reaction folks are small in number.

As far as being careful with a whole foods approach and attention to cc, I take that very seriously but without the paranoia that is all too rampant.

The distinguishing difference is anxiety levels. If you fear your food will make you sick than it most likely will. The notion that anyone would get sick from a hand washed dish is ridiculous, unless your friend left soap on the dish that by some small chance had a gluten containing ingredient and your son swallowed the soap. That's almost too bizarre to waste time on. The other occasions you mentioned are clearly from not washing hands and then using your hands to eat or putting them in your mouth...understandable.

[Roda]

The cross reaction from gluten-free oats is not a gluten issue....its a cross reaction and many Celiacs can tolerate gluten-free oats well. Protein structures may be similar but it's not wheat protein and only a small percentage of people react this way. The differences should be distinguished when posting to a forum so new Celiacs will not think you can have a gluten reaction from oats. Oats are loaded with nutrients and people should be encouraged to include them in their diet for the rich fiber source that they are. Only then will you learn if you have a problem but from what I have read and seen, the reaction folks are small in number.

I do agree with you. I used to love Bob's Red Mill products and I think they are a great company. When I make references I try to state I don't tolerate the products anymore because of my rather severe and annoying gluten free oat intolerence. I love oats and wish this wasn't a problem for me. It's not only this brand I have eliminated but other brands as well. There are plenty of gluten free products that I still tolerate just fine. I just have to ask additional questions. I realize that I am in the minority and try my best not to discourage people from trying oats. It is worth mentioning however, as a possibility if someone has incorporated them into their diet and are still having symptoms. When I fist tried oats my reaction was not so bad. I wasn't convinced so I ate more the next day and by that evening I was pretty bad off. I continued to avoid them after that but eventually I started having symptoms. I actually was pretty miserable for 8 months not thinking it was related to my celiac in anyway. It's when I did another elimination to avoid steroids that I figured it out it was the CC I was reacting to from the oats in gluten free products. It wasn't a gluten CC issue at all. It took a good three months and a RX of creon to heal. I do react to lower levels of gluten CC now also. I do believe the time I was malabsorbing left me with permanant digestive issues in the pancreatic enzyme department. Other foods will trigger malabsorption issues that have nothing to do with gluten at all, mainly fat digestion.