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Super Sensitive Teen

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Posted 15 December 2011 - 10:00 AM

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!

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Posted 15 December 2011 - 01:47 PM

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.
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Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease

DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)

DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.



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Posted 15 December 2011 - 02:57 PM

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.
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Posted 15 December 2011 - 03:13 PM

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?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!



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Posted 15 December 2011 - 11:24 PM

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.
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Posted 16 December 2011 - 12:00 AM

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.

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.
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Posted 16 December 2011 - 01:01 AM

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.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.



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Posted 16 December 2011 - 02:01 AM

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
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Posted 16 December 2011 - 04:04 AM

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.
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Posted 16 December 2011 - 05:44 AM


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.
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Posted 16 December 2011 - 05:54 PM

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. :D. 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!
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 16 December 2011 - 06:50 PM

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.
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Posted 16 December 2011 - 06:57 PM

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.
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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Posted 16 December 2011 - 07:45 PM

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.
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Posted 19 December 2011 - 07:58 PM

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.
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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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