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bkboerst

My Son Needs Help.....

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Hi Folks:

 

I am new to the celiac disease world.  My son was colic when he was a baby and no w at 15just found out he has celiac disease.  The day we found out, it was like a big relief to him.  He was happy, for once.

He was feeling like crap for this many years.  Poor kid!  On to a new chapter and hopefully a better one.  It seems as though he gets more depressed every day.  He doesn't want to go to school.  He knows we cannot fathom the idea of going out to eat.  We order gluten free pizza and on the box it reads "made in a gluten infested facility" so he doesn't want to eat that.  His attitude sucks.  Crabby and sometimes even mean to others.  He has missed so much school because he never feels good.  What can I do to make him feel better?  I need help.  I want my son to live life to the fullest and it seems it is just going down the tubes.  He is on an anti-depressant (Setraline which is like Zoloff).  This is the only one the psycologist will give him due to his age.

He refuses to eat any fruits or vegetables because of the texture.  I buy gluten free crackers and cookies.  He will not even try them.  I will make a gluten free meal for all of us and sometimes he won't even eat it telling me he does not like it.  I am angry and frustrated.  I want to have him talk to someone professionally but don't even know where to start looking.  Help?????

 

Brenda in Wisconsin

 

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Poor kid!

 

First of all, depression is one of the many symptoms of celiac. And on top of that, because he isn't absorbing things, he's not getting the full benefit of his meds. As he starts to heal not only will the meds work better, but he may find that he doesn't need them at all. Seratonin is made in the small intestine, and his is damaged. As it heals he'll start making it and his mood will improve.

 

Now, for the diet. It is a VERY hard adjustment for adults to make, but for a depressed teenager it has got to be worse. I think every one of us here had meltdowns at first. So let him have his period of mourning/anger/distress.

 

But he HAS to eat! Find him some good gluten-free bread. Udi's is good, and Canyon Bakehouse is even better. There are also good gluten-free pizzas on the market. I like Against The Grain. It'll be different from what he's used to, but after a while he'll start to like it. If he doesn't like fruits and veggies (neither do I), maybe you can chop them really finely and mix them into other foods. For instance, you can buy gluten-free pasta and put some finely chopped broccoli into the sauce.

 

You can get gluten-free pie crust and make him a sweet potato pie - tastes like pumpkin pie but with lots more nutrition. Some gluten-free cookies are pretty bad, but if he likes chocolate, get him some Udi's Double Chocolate muffins. They are beyond good! I mean, they are more delicious than any gluten chocolate cake type thing I've ever had. And if you could get him to try some of those crackers I know he'd be pleasantly surprised. Crackers are easy to make gluten-free and delicious at the same time.

 

Also, if you go to the breakfast/lunch/dinner threads here you will find recipes posted for just about anything you can imagine.

 

AND! He can still eat ice cream and potato chips. A healthier snack would be nuts. I buy the giant economy size can of Planter's (a brand that is safe) cashews because I eat a LOT of them.

 

Have you been to the Newbie 101 page yet? It's in the coping section here, and it will give you lots of tips on keeping him safe from cross-contamination.

 

So yeah, give him time, give him some of his favorite snacks that are already gluten-free, sneak some veggies in when you can, and watch his depression lift.

 

And give him a (((((HUG))))) from me.

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Gluten withdrawl is another reason.

 

What were some of his favorite gluten containing foods? Most can be made gluten free.

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Hi BKBoerst,

 

It is probably going to take a while for his gut to heal.  Months to a year or more.  I suggest you take it easy on the processed gluten-free foods at first.  A simple diet of whole or minimally processed foods is much easier to digest and less likely to be irritating to the gut.  It is also simpler to avoid gluten if you use whole foods instead of processed foods.  When people start the gluten-free diet, they often have bad reactions to many foods.  The gut is damaged and irritated, and not much makes that feel good when thrown at it.  Spicy foods are a bad idea.   It might help to get him to tell you what foods he likes to eat.  Eating lots of protein can help with healing, as the body needs protein to rebuild tissues.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Hi Brenda,

 

Welcome - there are so many stories shared on this forum that shed light on our own circumstances and help guide us. Your son is very lucky to have a concerned mom looking out for his best interests.

 

I thought I might add to the great advice given above. I wondered if perhaps your son is feeling as if things are beyond his control and overwhelming at the same time. As a teenager, I wonder if he might be interested in investigating the Paleo "diet". It might place control, ownership and confidence back into his own hands.

 

All the best

 

D

 

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Keep on, keeping on.  He is recovering from a serious disease which- Thankfully you have defined and can be managed with diet.  He is being careful in his food choices.  He probably feels really sick if he misses.  Also,  I know my appetite was slack at first.  Keep trying different vegetables as he needs them.   There is bound to be some he will like. I agree with stay away from factory processed for now.  Nuts are crunchy like crackers.  I make pancakes, muffins and pie crusts with nut flour.

 

Health to you and your family.

 

D

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His attitude is okay. You need to be more mindful of cross contamination (its a steep learning curve). Gluten free pizza made in a gluten facility is NOT safe for celiac. Flour dust is suspended in air for 24-48 hours contaminating everything. There is a lot to learn (for everyone involved) and it is overwhelming and he can't be too careful - or he will end up sick. He may be afraid to eat and rightfully so! Some people start with gluten-free nutritional supplement shakes.

He may need a 504 plan at school to protect him.

Your kitchen and pots and pans, cutting boards, utensils could be making him sick. He needs new dedicated wood and plastic, as gluten ones are contaminated because they are porous. Stainless steel and glass are okay.

You need to stop using any gluten flour or dry flour product mixes in your kitchen. He needs his own new gluten-free toaster.

Let him browse amazon for a paleo cookbook to pick out. The are some for kids. Paleo is the way to go, especially in the beginning while healing because most grains have a little bit of cc.

He is going to have to start learning how to prepare gluten-free foods for himself. So he should be encouraged and supported to try to make some recipes from a paleo cookbook.

As he heals his depression should lift.

I was able to get off all antidepressants after going gluten-free. Never felt so emotionally stable in my whole life.

Give him time and ask him what he wants.

Best wishes!

Greta

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Where do you live?  Maybe you can offer him a long weekend trip to NYC to kick start his gluten free lifestyle - we have some really good restaurants here that he can eat at (Risotteria?  Bistango?), a small store dedicated to gluten-free only, where he can browse for safe foods, and I've recently learned (but haven't tried) an entirely gluten-free Crumbs cupcake bakery, among other options.  The trip can be a bribe, but he will also see the options out there and maybe you can hook up with some locals who know of Celiac teens here.

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To echo what Nikki said....

My son (11), who is not celiac (but may be one day) and may be ncgi, went with me to a gluten-free restaurant.

He was totally psyched that he could eat anything in there and it was gluten-free and safe. What he REALLY liked, that I had no clue was an issue is that he could SHARE with me - that he wouldn't contaminate me or my food.

Tonight, we went to another restaurant that serves excellent gluten-free pizza as well as gluten pizza...and he ordered gluten-free so he could, in his words, "touch you without glutening you - I don't have to wash my hands".

So, it or may not be the diet. It may be the lifestyle or some other factor he can't express. Anyway, talking to other gluten-free teens may help. Being somewhere "safe" may help.

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My daughter was just dxd also and she wants to be part of everything, including taking everything out of the cupboards and marking it gluten-free or knowing that it wasn't. She also has been making her own lunches, simple things like a sandwich with Udi bread, yogurt, and fritos, or a salad. She is also meeting with a dietitian. I can only guess from how we feel as parents that every thing is a huge roller coaster that kids are even worse. They are used to a world that is fairly ordered and all of a sudden everything is upside down, add in hormones and you start looking for the nearest cliff... I hope things start getting better soon!

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Poor kid!

 

First of all, depression is one of the many symptoms of celiac. And on top of that, because he isn't absorbing things, he's not getting the full benefit of his meds. As he starts to heal not only will the meds work better, but he may find that he doesn't need them at all. Seratonin is made in the small intestine, and his is damaged. As it heals he'll start making it and his mood will improve.

 

Now, for the diet. It is a VERY hard adjustment for adults to make, but for a depressed teenager it has got to be worse. I think every one of us here had meltdowns at first. So let him have his period of mourning/anger/distress.

 

But he HAS to eat! Find him some good gluten-free bread. Udi's is good, and Canyon Bakehouse is even better. There are also good gluten-free pizzas on the market. I like Against The Grain. It'll be different from what he's used to, but after a while he'll start to like it. If he doesn't like fruits and veggies (neither do I), maybe you can chop them really finely and mix them into other foods. For instance, you can buy gluten-free pasta and put some finely chopped broccoli into the sauce.

 

You can get gluten-free pie crust and make him a sweet potato pie - tastes like pumpkin pie but with lots more nutrition. Some gluten-free cookies are pretty bad, but if he likes chocolate, get him some Udi's Double Chocolate muffins. They are beyond good! I mean, they are more delicious than any gluten chocolate cake type thing I've ever had. And if you could get him to try some of those crackers I know he'd be pleasantly surprised. Crackers are easy to make gluten-free and delicious at the same time.

 

Also, if you go to the breakfast/lunch/dinner threads here you will find recipes posted for just about anything you can imagine.

 

AND! He can still eat ice cream and potato chips. A healthier snack would be nuts. I buy the giant economy size can of Planter's (a brand that is safe) cashews because I eat a LOT of them.

 

Have you been to the Newbie 101 page yet? It's in the coping section here, and it will give you lots of tips on keeping him safe from cross-contamination.

 

So yeah, give him time, give him some of his favorite snacks that are already gluten-free, sneak some veggies in when you can, and watch his depression lift.

 

And give him a (((((HUG))))) from me.

Thank you so much for the info.  I definitely will give him a hug.  I am so looking forward to the day he is actually healed and happy.

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Thank you all for listening to my story.  Your information will help me and my son learn more about this disease.  I am going to check into this Paleo cookbook.  I did not know that I even have to dedicate utensils to my cooking.  Will do.  I wish we could take a vacation but.... just started a new business and the finances are not there right now.  I think I will take him to a movie today and spend some quality time with him after we go shopping for new utensils
~Is it safe to buy gluten free pizzas from a local grocers deli?  I am going to get on the mall and check out some of the gluten free products they have to offer.

Thanks again.

Brenda from Wisconsin

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Thank you all for listening to my story.  Your information will help me and my son learn more about this disease.  I am going to check into this Paleo cookbook.  I did not know that I even have to dedicate utensils to my cooking.  Will do.  I wish we could take a vacation but.... just started a new business and the finances are not there right now.  I think I will take him to a movie today and spend some quality time with him after we go shopping for new utensils

~Is it safe to buy gluten free pizzas from a local grocers deli?  I am going to get on the mall and check out some of the gluten free products they have to offer.

Thanks again.

Brenda from Wisconsin

It is not safe unless they specifically say they are made in a dedicated facility. That kind of product generally caters to fad dieters rather than celiacs. To give you an example of how bad it is, if I touched a surface that I ate cookies on over 9 months ago (before I was diagnosed) and touch my mouth then I will get sick. This actually recently happened.

 

You need to check everything. Even his shampoos, soaps and anything that would somehow find its way into his mouth. You need to scrub down your kitchen and replace everything with a porous surface and any small appliances that have plastic that comes directly in contact with food. You need to all train yourselves to wash your hands before you touch any food that he will eat. If you touch a surface that could have been contaminated, rewash them.

 

Never assume something is gluten free, dig around on the internet until you find something on the company site that says it is. You wouldn't believe the things that have gluten in them. I've found an orange soda I used to drink that had a type of flour in it. I'd really love to find out who puts this stuff in these products.

 

I'd also suggest giving his sheets a wash or at least switching out his pillow case. New kitchen towels are a good idea as well.

 

Give him time, the combination of losing a food that is a big staple of our diets, being a teen and having to deal with a chronic illness and the gluten and probably carb/refined sugar withdrawal is really hard. It really helps to know that there are a lot of people out there going through the exact same thing. You may need to help him figure school (like GretaJane said, except I have no clue what a 504 is, maybe not a thing in Canada?), because it took so long to diagnose my Celiac Disease I missed a number of years of high school and its a real pain finishing it now (I'm 20 and really just want to move onto secondary education).

 

Best of luck :)

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.  I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room. Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.  I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
    • Nice!  Thanks so much for sharing.  😊
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      http://bit.ly/2tnQrzB   Cheers,
      Travis Hiland  
    • Thanks for looking and responding. Hopefully can get in to see a gastroenterologist soon. Will have to wait for regular dr to come back first. Thanks again! 
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