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lilgreen

How Can I Get Dh Fully On Board?

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Just yesterday he took him to a birthday party and let our son eat the meat and cheese off the pizza. he also let him eat the ice cream cake because the only thing containing 'wheat' was in the middle layer, which him made our son eat around. Beside cross contamination, there could have well been other gluten sources than 'wheat'. After dh went out last night, our son was rolling in his bed with horrible stomach pains.

Thing is, dh knows this! We all went to the gastroentologist together who said very explicitly that we should even consider getting separate toasters. I've bought the gluten-free for dummies book, but he won't look through it. I've told him about how ds suffers when he's glutened, but he feeels that some stomach aches aren't going to kill him, so it's not that big of a deal

What can I do to make him understand the importance of zero tolerance about gluten? Any suggestions would be greatly appreciated.

Thanks so much in advance.

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Well, first start by telling your DH that the stomach aches CAN kill your son.

Celiac untreated results in stomach cancer (which, the last I heard, makes a LOT of people die) and can trigger other autoimmune diseases.

If I were in your position, and my husband was not completely compliant and continued to gluten my child after a diagnosis with a disease, I would consider it child abuse/neglect.

Maybe ask your husband: "If our son was diabetic, would you refuse to give him an insulin shot and feed him Snickers?"

Just because some Celiacs suffer from "just stomach aches" does not mean the end result is not any less damaging.

I know that maintaining a strict gluten-free diet can be difficult and not always easy to manage in social situations (such as birthdays with cake and pizza and such), but there are far better ways to deal with it than making your child sick on purpose. Sooner or later your child is going to figure this out and resent his father for keeping him from healing.

You can also help educate your son by telling him it is NOT ok to eat any food that touches the "bad stuff" and encourage him to have his food brought along with him to events like those.

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Maybe a list of all the potential complications of untreated celiac? That's not just a little stomach ache, that's cancer in the making. Untreated celiac does kill people. I have no idea what other advice to give you - seems like a tough situation. Has your husband done any of the research on the disease himself or has it been all you? Maybe getting him involved in grocery shopping, calling companies, doing the cooking would help.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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DH went out last night? Like out? Not work?

It sounds like DH needs to stay in and take care of his son when he makes him sick! DH needs to learn that parenting isn't giving kids candy and treats and letting them do what they want, but giving the child what he needs to grow to be a good, healthy person .... that might mean denying him a treat, it might mean disciplining.

Your husband needs to be a man. Make him stand up to the task. It almost sounds like you have two children. Treat hubby like the head of the household so that he becomes the head of the household ... this will make you more of a team. You shouldn't have to be the bad guy all the time.

Maybe I misunderstood, but this is what it sounds like.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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What can I do to make him understand the importance of zero tolerance about gluten? Any suggestions would be greatly appreciated

I don't think you CAN reason with a guy who was told as you said explicitly what it means to avoid getting gluttened and yet he still scraped the top off pizza. My Gosh how can you do this to your child. I think what you have to do is to be very bold and tell him yourself YOU will not tolerant this. You have to become your sons advocate. Make sure he knows how angry you are. I wouldn't go the understanding route I'd go , listen to me , YOU will not do this anymore.

Now if he doesn't change then he isn't respecting you. A good marriage has to have this two way respect. He has to know he's not only hurting his son but hurting you. Please get the support of your mom, sister, friends on this. I don't think you should let him off lightly on this.

I'm sorry if this sounds harsh but I just see a red flag here. But you can nip it in the bud hopefully.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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How long has it been? Sounds like DH is still in denial, which makes him human, not awful. That being said....

...my son, as a gluten-ingesting undiagnosed celiac, began his crisis one fall. First it was limping, then it was joint pain, then came the NSAIDS for the rheumatoid arthritis dx, then the rapid and debilitating weight loss. Throughout all these doctor visits, hundreds of miles, and millions of phone calls, he continued to get worse. Then came the three months unable to be at school, then the 7 week stay in a children's hospital 200 miles from home. Three more months recuperating at home, where he could literally only walk to the end of the driveway. The untreated celiac had forced his body to burn all the muscle tissue in his arms and legs. An entire year of school missed. Jazillions of invasive tests, procedures and interventions. These are the consequences, for us, of eating gluten. He had been "normal" for 9 years.

People smoke, knowing the risks. People drive fast, knowing the risks. Your husband is entitled to risk his OWN health, and your son can risk it when he's old enough to make that choice. But for now, it's unacceptable parenting. Can you "make" DH stop it? Nope. Take the DH to the next doctor appointment, make HIM take care of the sick child, and cross your fingers.

joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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This is a really hard situation. How long ago was ds diagnosed? If it hasn't been long, I definitely agree it sounds like denial. My husband was in the middle east with the Navy when Katharine was diagnosed. When he returned home I had to give him a crash course until he was able to read the book. He had a hard time comprehending the cc factors but I told him of the conditions that can arise from being untreated in the long run. Now he fully understands and 7 months later he is finally getting brave enough to make her breakfast! :)

I also agree that DH should have to witness and take care of ds when he has a stomach ache and is suffering the affects of DH noncompliance instead of going out with friends. Maybe seeing his son in pain with set off some alarms and wake him up. Ask him if it feels good to go out and have fun while his son is in pain from his doing. Is there anything that DH can't eat or do from health risks? Maybe put it into his terms. Maybe have a sit down conversation with ds when dh is there and casually talk about how he feels when he gets glutened even from cc. This way it doesn't put the blame on your husband but he can hear it from your son. it sounds like you have to play hardball and some guilt tripping might need to be put to work. Anything to help your son.

If everything fails and he won't get on board, I would not leave your son with him at all. This will be difficult but if you can't trust him to keep your son healthy than you can't leave him with him. You wouldn't rehire a babysitter that refused to keep him gluten free, why leave him with dad if it is the same. Maybe also show him the responses you have gotten here. I definitely think he should continue to go to doctor appts. When the doctor asks why his antibodies aren't down on the next blood test, dh can tell them that a little belly ache never killed anyone. Also remind him next time he gets the flu that "a little belly ache...."

I am sorry that you have to deal with this. You guys need to be a team more than anything right now, for each other and your son while you all go through this change. I wish you luck and hope he comes around for your sake and most of all your son's!


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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I'd visit the nutritionist and the doctor as a family and get the doctors to explain it all. If it's coming from somebody objective and authoritative like a medical professional, he's more likely to get it.

What a difficult situation. I'm so sorry this is happening.

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lilgreen,

It's a hard situation and I hope you can fix it soon for your DS's sake.

Someone I read here said that they keep a dozen cooked gluten-free cupcakes in the freezer. When their kid has to go to a birthday party, they pull out the cupcake, frost it with premade frosting (Betty Crocker vanilla is gluten-free, I believe) add some gluten-free sprinkles and send that with the kid to the party along with a small cup of ice cream or a gluten-free ice cream bar (have the host put the ice cream in the freezer). The cupcake defrosts in time for the party. So that way the kid doesn't feel left out. Pizza might be a little bit harder but you could send something like a home-made "Lunchables" with gluten-free crackers, pizza sauce cheese, pepperoni etc. The best offense might be a good defense.

If you do this, yes, you are doing a lot of work that maybe your DH should help you with but in time, it may help him see what is necessary to keep your son safe.

I think it would be unbearable to take a small kid somewhere and tell them they can't have the cake or pizza or whatever. My DS is 14 and just went to his first soccer end-of-year pizza party, and he sat and ate nothing, and it really made me sad/mad/unhappy! I promised my DS homemade pizza after the party and that was ok with him, he had a snack before he left, but he is much older than your DS.

Best of luck to you.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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My hubby had nothing to do with Luke's gluten-free diet at first. He was extremely skeptical at first. (My son was diagnosed, well, by me.)

It wasn't until Luke's health totally turned around on the diet that my DH came around. At that point he had a lot of catch-up to do. Even now, as other posters have said- preparation is important. The cupcakes in the freezer are great, and I also try to have pizza completely made, sliced, and frozen. At any time, it can be taken out and microwaved.

And BTW- yes, you really really need to get a new toaster that is dedicated to gluten-free bread!!!

Your son will never get better until he stops being glutened, so I agree- write out all the problems that Celiacs can get: the cancer, the malabsorptive problems, brittle bones, fertility problems, etc. It's not all about stomach aches :(


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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This is a really hard situation. How long ago was ds diagnosed? If it hasn't been long, I definitely agree it sounds like denial.

Just a quick response to say it's only been three months since ds' diagnosis, so I agree too that this is denial to some degree. Thank you for taking the time to respond.

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lilgreen,

It's a hard situation and I hope you can fix it soon for your DS's sake.

Someone I read here said that they keep a dozen cooked gluten-free cupcakes in the freezer. When their kid has to go to a birthday party, they pull out the cupcake, frost it with premade frosting (Betty Crocker vanilla is gluten-free, I believe) add some gluten-free sprinkles and send that with the kid to the party along with a small cup of ice cream or a gluten-free ice cream bar (have the host put the ice cream in the freezer). The cupcake defrosts in time for the party. So that way the kid doesn't feel left out. Pizza might be a little bit harder but you could send something like a home-made "Lunchables" with gluten-free crackers, pizza sauce cheese, pepperoni etc. The best offense might be a good defense.

If you do this, yes, you are doing a lot of work that maybe your DH should help you with but in time, it may help him see what is necessary to keep your son safe.

I think it would be unbearable to take a small kid somewhere and tell them they can't have the cake or pizza or whatever. My DS is 14 and just went to his first soccer end-of-year pizza party, and he sat and ate nothing, and it really made me sad/mad/unhappy! I promised my DS homemade pizza after the party and that was ok with him, he had a snack before he left, but he is much older than your DS.

Best of luck to you.

~Laura

Thank you. I did actually send them with a baked treat and snacks. No replacement for the pizza, though. I definitely agree that making ds not feel left out is best and 'should' help dh not feel like he's depriving ds. It is more work, but it is important. I will be more diligent with this. The freezer cupcakes is a really good idea. Thank you!

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I can't thank you all enough for your ideas and support. I will make a list of the awful things that can happen to ds and show it to ds. i will keep 'party foods' in the freezer, too. Dh has to some degree embraced the gluten-free diet for ds... i bought the cookbook "incredible edible gluten-free food for kids" and dh has been making lots of food from it.

I'm really beginning to think there are respect issues at play, too. Tonight, for example, he was letting ds eat chips that I had told him more than once already are not on the manufacturer's gluten-free list, meaning they can potentially contain gluten. I told him again when I saw this and he said there was no gluten source in the ingredients. But, I had a reaction eating them a month ago (I'm a self-diagnosed celiac and went gluten-free with ds) and consequently contacted the manufacturer. argh!

Anywho, enough ranting. Thank you all. I know I can't be passive about this issue.

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I feel for you as it does look like your dh is a teenager at heart. Basically rebelling againist what he is told to do.

Feel free to copy and paste the following and print it off for dh...if you think it will help. By doing copy and paste to wordpad or works sheet - he wont see the intro and get all nasty cause you have been talking about him...[as some men can do]

I applaude your diligence about keeping your son safe from cross contamination. I wish with all my heart that our children had been diagnosed sooner. They are both celiac diagnosed at age 12 (dd) and 10 (ds)...unfortunately it was AFTER our son was diagnosed Type one diabetic at age 9, then lactose intolerant....it was AFTER our daughter was diagnosed hypothyroid at age 4 and as you see by the signature - a host of immune mediated diseases. Knowing what I know now, info from the GI and endocrinologist - and a lot of hindsight, each child had symptoms since an early age - I didnt know the migraines and leg pains and stomach aches were from celiac unitl they were diagnosed and we went gluten free. Since going gluten free, our son has been healthy and doing okay with giving himself 3 shots a day for diabetes. My daughter though - still continues to manifest strange illnesses and infections that specialists believe are related to her ongoing autoimmunity that ...at least in her.... doesnt want to turn off after so many years of "triggers" [gluten]

Your son was diagnosed early enough and if he is strictly gluten free - he may avoid daily insulin, growth failure from hypothyroidsim and other immune disease that can be triggered when the body has to react to gluten by sending the immune system on high alert. Each little bit of gluten, each stomach ache triggers a cascade of immune globulins into the system, damaged villi take time to recover...and while they recover...are inflammed and leak proteins into the blood.

Accidental "glutenings" will happen...but if he knowingly eats or is fed food that will hurt his small intestine and trigger a reaction - then you should be prepared for the long term consequences [not just tummy aches]. They arent immediate and he may be fine for years...until one day he comes to you and says "Mommy, I peed 17 times today"....and with horror you look at him and see a sick child...you take him to the doctor and they say he has diabetes. That is exactly when life changed for us - those words echo in my head and I will always remember he said 17 times...and that I was making his BD cake - which was put in the freezer unitl we came home from Childrens hospital 4 days later.

For soccer parties, end of season golf parties, birthday parties - I have sent a homemade pizza or a few slices that can be microwaved and eaten at the same time as everyone else chows down on gluten. I keep cookies and cupcakes in the freezer too. I talk to the host ahead of time and ask that cheese and fruit and vegges be made available and I offer to provide dip so I know its gluten free. I send his Lactaid if dairy will be offered. I send a cupcake for 2 reasons - gluten free and we know the carb count for matching to his diet plan.

If dh reads this and then feeds your ds food with gluten [traces or otherwise]...then I would agree with the poster who called it child abuse.


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I applaude your diligence about keeping your son safe from cross contamination. I wish with all my heart that our children had been diagnosed sooner. They are both celiac diagnosed at age 12 (dd) and 10 (ds)...unfortunately it was AFTER our son was diagnosed Type one diabetic at age 9, then lactose intolerant....it was AFTER our daughter was diagnosed hypothyroid at age 4 and as you see by the signature - a host of immune mediated diseases. Knowing what I know now, info from the GI and endocrinologist - and a lot of hindsight, each child had symptoms since an early age - I didnt know the migraines and leg pains and stomach aches were from celiac unitl they were diagnosed and we went gluten free. Since going gluten free, our son has been healthy and doing okay with giving himself 3 shots a day for diabetes. My daughter though - still continues to manifest strange illnesses and infections that specialists believe are related to her ongoing autoimmunity that ...at least in her.... doesnt want to turn off after so many years of "triggers" [gluten]

Your son was diagnosed early enough and if he is strictly gluten free - he may avoid daily insulin, growth failure from hypothyroidsim and other immune disease that can be triggered when the body has to react to gluten by sending the immune system on high alert. Each little bit of gluten, each stomach ache triggers a cascade of immune globulins into the system, damaged villi take time to recover...and while they recover...are inflammed and leak proteins into the blood.

You state the potential consequences so clearly - thank you. I'm so sorry your children have had such a rough time with this. I sure do count us lucky for getting a fairly early diagnosis, although ds had symptoms for years.

Dh gets that gluten is bad for ds, but it's those little bits he can't comprehend, so you've really made it clear what harm just a lilttle bit can do.

I will show him parts of your message. Thank you!

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Would your DH be willing to go to a celiac support group meeting? I bet if you were to casually let it slip what DH has been up to, the other celiac moms would set him straight - and quick!


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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Would your DH be willing to go to a celiac support group meeting? I bet if you were to casually let it slip what DH has been up to, the other celiac moms would set him straight - and quick!

That's a great idea, although I highly doubt he's go. I had to really force him to go to the gastroentologist's. But, it's certainly worth a try. I know the Celiac Assoc of Canada has a Vancouver chapter (where we live), so I'll contact them.

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Well, first off all you need to let your hubby see how horribly sick your child gets, if he works at night, take pictures, record the moaning and crying, make a videotape what ever you need to document this. then the next day let him watch it, and her will need to watch every second of it! After that, present him with the list of longterm-damage that arises from Celiac, as well as the fact that Celiacs have a 6 times higher chance of dying. It is also very important that when your son rolls in bed with all this pain that you keep reminding him, that he can't have the top of regular pizza and that he can't have this and that and that that is what made him sick and always will! If he starts blaming his father you can always tell a little white lie that daddy doesn't know any better and he could maybe teach his dad nexct time what he can't have! Naturally over time he will come to resent the things that make him sick- that's hwat I was told!

Good luck!

You state the potential consequences so clearly - thank you. I'm so sorry your children have had such a rough time with this. I sure do count us lucky for getting a fairly early diagnosis, although ds had symptoms for years.

Dh gets that gluten is bad for ds, but it's those little bits he can't comprehend, so you've really made it clear what harm just a lilttle bit can do.

I will show him parts of your message. Thank you!


Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

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Our son isn't offically dx celiac but is gluten/casein and soy intollerent via tests. My husband was also in denial too. But once I took charge of the food our son ate and he saw the improvements in his overall health, appeitie and clearness of rashes he understood this was something he could no longer be indenial about. I always send his food with him for parties, birthdays, trips to families houses and eatting out. We only recently just started to eat out again and only places which I have confirmed have safe choices for us.

Also having no gluten in our house has helped too. My entire family eats gluten free at home and I do not allow gluten stuff in my home anymore. (well I do allow a couple of things for hubby like his bread for lunches & bisquick when he makes waffles & granola bars). This was amuch safer option that way I know when I take a shower there isn't gonna be a mix up.

My son is only 4 and he is very good about eatting gluten free and he doesn't ask for the forbidden foods we use to have.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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