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elfie

Sad For The Child But Not Much I Can Do

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I just got back from my DH's family TG. A couple years ago 1 of my SIL's grandbabies was diagnosed with near fatal complications of celiac. It took doctors a while to figure out that it was gluten causing the almost fatal condition--I won't get into the graphics.

Anyhow, it came up in conversation that the doctor is saying the child has outgrown celiac. Apparently the child can eat something that family thinks is wheat but it is actually oats---don't know if it's on safe list here or not. Needless to say, everyone jumped on board with that---the parents are extremely young so it's pretty much a given they'll believe whatever the doctor tells them. I really like my SIL but due to other circumstances I am not in a position to say anything because then I'll just give another reason for others in the family to consider me the crazy outsider.

So, the child has healed some over the past couple of years. Since the child was asymptomatic so far as they knew, until the near fatal complications, I fear it's only a matter of time and they may not catch it until it's too late if they go back to the SAD diet.

Thanks for listening. I needed someplace to share this.

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Wow - that is scary. How do they know this child has outgrown Celiac anyway? The only way they would be able to tell is doing follow up endoscopies every 6 months to check for damage. This dr sounds very irresponsible. Maybe don't say anything but direct the parents to this forum?


HLA DQ8, gluten-free since January 2011

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If you could find out the doctor's name, perhaps you could send HIM some celiac information anonymously, quoted, with citations, from notable sources (If you're not sure how to get the info, say you have someone moving to their town who's looking for a good pediatrician recommendation, whatever you've gotta do). Perhaps the papers could have something on the front page, in large typeset, that quotes the fact that you can't outgrow celiac disease.

They obviously listen to the doctor, so if you can't educate them, educate the person they are listening to.


T.H.

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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I'm confused. Gluten-free oats are fine for a lot of celiacs. They aren't feeding the child wheat, barley, or rye are they? They can't be so stupid as to risk the life of their child again?

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I don't know about the US skylark - but here in Australia oats are a big no no, even the gluten free one. Its to do with how they are grown and stored here (co-grown and stored with wheat). Maybe it the same for OP??


HLA DQ8, gluten-free since January 2011

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You can't outgrow celiac. They are risking that child's life. The child could die. I think you have to speak up. Even if it's hard, just do it. Contact them and talk to them. Send them to this board. It takes a lot of damage to come up positive on endoscopies and endoscopy is invasive. It is cruelty and abusive to scope a child for no reason other than to try to feed a celiac kid wheat or oats or whatever again.

That kid can die and they are morons if they fool around about this. That poor kid. I hope you can get involved. You could save a life. In this instance politeness is not that important. Be polite, but don't beat around the bush. Be direct and tell them the truth.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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Thanks everyone, I wish it were just about politeness because I have no problem overcoming it when necessary. I don't even know the parents or their names so there's no way to even get to them directly or I would try. My SIL works for doctors and is one who thinks their opinions are, well, you know how it goes. I only see her once or twice a year and don't even have her phone number.

My relationship with my husband is shaky at best and he rarely thinks my gluten issues are anything more than in my head. I'm glad I shared because, even though it may do no good, I've been in debate about asking him for SIL's number so I could talk with her privately.

When I shared with her about my gluten issues in the past, she was of the school that if you don't eat bread, crackers, etc. it'll be fine. You know the kind, if you don't eat the crust the pie is ok. Just pull the croutons off the salad and so on.

Even though I have gluten issues I don't have issues with oats (medical testing to back it up), yet I've had issues since I was a kid with what she said he was eating with no trouble. Other than what I've shared here I have no information on how the doctors reached the opinion that he's outgrown it.

Yes, I'm going to try to get her number so I can talk to her on a day when I'm not the outsider at a family function. I'll at least give her the information I have and a couple of links if she'll take it. It kind of feels like the starving kids in the world---I know it's going on but I'm in no position to make a difference.

Thanks again. I needed to get it off my chest somewhere where I knew I'd get support. I'll do the best I can.

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Oh, and Shauna, I had to laugh (I needed it too) about educating the doctor. I can't even educate my GP and he's relatively fresh out of medical school. I've been with him since his internship about 7 years ago.

For those wondering, he's the best of the bunch of doctors I've been to in the past 20 years, sorry to say. At least he doesn't treat me like everything is all in my head. I won't bore you with my experiences with the different specialists and such I've seen, too many of you have had similar experiences.

Thanks!

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I would most definitely find out the doctor's name and report him/her to the local medical board for endangering the child's life! I would also give that doctor's name to the Celiac Association and have them send him/her some up to date information that points out this is an auto-immune disease, and not an allergy that can be "grown out of". And I would talk to the child's parents and tell them to change doctors.

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I don't know about the US skylark - but here in Australia oats are a big no no, even the gluten free one. Its to do with how they are grown and stored here (co-grown and stored with wheat). Maybe it the same for OP??

In the US we're getting some certified gluten-free oats from oat-only farms that pass tests with R5 elisa. They are OK for some celiacs but not all. Probably 10-15% of celiacs react to oat gluten - we have some oat sensitive folks on the board.

Good luck talking to your SiL. I hope you can get this child eating safe food!

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Update:

It took a few days, but I got her # and texted (didn't call because she never answered or returned my calls in the past)the information as well as reputable links. I've not heard anything back either through text or phone or her brother in all this time. I can only pray that she bothered to look at the links and passed on the information.

It s**ks that there is no way for me to reach the parents directly and that even if I could, the knowledge would probably fall on deaf ears. It's so much easier to believe that everything is ok.

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good luck - my niece is 9 - she could be my little 'health clone' - terrible rashes, constant D, anxiety - the pickiest eater (which i was ever since i can remember because food made me sick!) so, last thanxgiving they came to visit and i had a loooooong chat with my sil and she agreed to have my niece tested when they got back home. never happened. the kid is still pulling her hair out from the same rash i always had. i look at her and i see me. it sucks :( i even tried to talk them into sending the kids down for a month in the summer so i could feed them gluten-free and see if she felt better. no dice. (my brother - her dad - won't even try the diet even though he admits he is lactose intolerant - probably due to villi damage) my sister's son was finally tested and came back negative. he just turned 18 and ALL OF A SUDDEN he's paying attention to what aunt arlene is eating and had a whole lot of 'poo' questions the last time they visited. my celiac panel came back negative, too, but beefing up my puny body 20 lbs is visible now. he can see me looking healthier, so...... maybe he will adjust his diet on his own?

i said what i had to say and i will answer any questions. aside from that, i give up. like you said: not much you can do :(


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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I've had a few situations come up with kids where I want to shout at the parents but feel like it's not my place. My hair stylist (and good friend) has a son who has had terrible eczema. She went gluten free for him and it cleared up the eczema as well as his sinus problems. The main problem was that she is divorced and her husband thinks it's a load of crap. The other problem is that she finally took him to the doctor to be tested for celiac and of course it was negative...he'd been on at the very least a gluten-lite diet.

The hardest one was meeting a woman at a party. She had two sons age 2 and 4 who were teeny. She also had a one week old baby girl. The party was her first time out. She told me that her 2 year old had just tested positive for celiac but the doctor wasn't too concerned and she was feeling overwhelmed...she was a week away from delivering when they got the diagnosis. I did try and be very gentle about how I approached it, but I did tell her about my daughter and her vast improvement and the fact that she was finally growing.

I saw this woman again 2 months ago and her baby was 5 months old and she was asking more questions about gluten free but still hadn't done anything. I guess if the doctor thinks the diagnosis is no big deal, then what is the parent to think? It's just heartbreaking...and even though I do talk about my own journey, I don't know how far to go in these situations. I already feel like people think I'm crazy. I can't tell you how many times people ask me "Oh...are you still doing that gluten free thing?" LIke it's a choice at this point.

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An interesting article they might read. I don't agree with everything he says but he has the right ideas.

Gluten: What You Don't Know Might Kill You


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, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I've had a few situations come up with kids where I want to shout at the parents but feel like it's not my place. My hair stylist (and good friend) has a son who has had terrible eczema. She went gluten free for him and it cleared up the eczema as well as his sinus problems. The main problem was that she is divorced and her husband thinks it's a load of crap. The other problem is that she finally took him to the doctor to be tested for celiac and of course it was negative...he'd been on at the very least a gluten-lite diet.

The hardest one was meeting a woman at a party. She had two sons age 2 and 4 who were teeny. She also had a one week old baby girl. The party was her first time out. She told me that her 2 year old had just tested positive for celiac but the doctor wasn't too concerned and she was feeling overwhelmed...she was a week away from delivering when they got the diagnosis. I did try and be very gentle about how I approached it, but I did tell her about my daughter and her vast improvement and the fact that she was finally growing.

I saw this woman again 2 months ago and her baby was 5 months old and she was asking more questions about gluten free but still hadn't done anything. I guess if the doctor thinks the diagnosis is no big deal, then what is the parent to think? It's just heartbreaking...and even though I do talk about my own journey, I don't know how far to go in these situations. I already feel like people think I'm crazy. I can't tell you how many times people ask me "Oh...are you still doing that gluten free thing?" LIke it's a choice at this point.

I don't beat around the bush with people like that. I tell then point blank how dangerous it is to still give their child gluten. I tell them my story and how I've suffered and I am emphatic that their child needs gluten free yesterday. I figure if I save a child's life its worth it to make the parents uncomfortable.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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I don't beat around the bush with people like that. I tell then point blank how dangerous it is to still give their child gluten. I tell them my story and how I've suffered and I am emphatic that their child needs gluten free yesterday. I figure if I save a child's life its worth it to make the parents uncomfortable.

I don't disagree. I have been very conflicted about my lukewarm response. I knew she was overwhelmed...I mean, the baby was only a week old. Next time I see her I am going to be very clear about getting both those boys gluten free asap. I can't believe her pedi was so "whatever" about a positive blood test. I should find out who the pediatrician is too, because you knew she's seeing other kids in the same boat. Most of the time I'm like an born again preacher when I tell people about gluten free. I know I didn't really handle that well either time.

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I kinda wonder what good aggressively confronting her would do. Doctor vs lay person. Doctor says no need for gluten-free, person says there is need. Remove all our celiac knowledge and who would you naturally side with, the doctor or non-doctor.

I would be afraid of irreparably burning that fence with a harsh confrontation that has a strong likelihood of failure since you possibly could help her over time. Maybe a good celiac book would make a nice Christmas gift.

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I kinda wonder what good aggressively confronting her would do. Doctor vs lay person. Doctor says no need for gluten-free, person says there is need. Remove all our celiac knowledge and who would you naturally side with, the doctor or non-doctor.

I would be afraid of irreparably burning that fence with a harsh confrontation that has a strong likelihood of failure since you possibly could help her over time. Maybe a good celiac book would make a nice Christmas gift.

Well, I wouldn't be too aggressive...I hope. When I talk to people about gluten free I'm usually more enthusiastic. I think I could talk to her without being harsh.

Maybe my opinion of doctors has changed so much over the last two years, but I hope as a woman living with gluten intolerance (I believe undiagnosed celiac based on DH rash...but I'm self diagnosed) and a mother of a little girl who was so tiny and so sick we thought she had cancer before we took her off gluten (and dairy and corn), who had many, many other celiac symptoms, that my "opinion" would carry more weight than her doctor who probably is clueless about celiac. In fact, she is clueless if she's unconcerned about a child's positive blood test.

I think the book is a great idea...or a cookbook. I think she's concerned, but doesn't get the urgency of starting now.

See...this is the one person I've confronted that I can't get off my mind...

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The first year celiac book is a great one IMO. it was the first i read and I loved how it was a good starting guide. i bet you she will come back to you with questions as she reads it.

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I just got back from my DH's family TG. A couple years ago 1 of my SIL's grandbabies was diagnosed with near fatal complications of celiac. It took doctors a while to figure out that it was gluten causing the almost fatal condition--I won't get into the graphics.

Anyhow, it came up in conversation that the doctor is saying the child has outgrown celiac. Apparently the child can eat something that family thinks is wheat but it is actually oats---don't know if it's on safe list here or not. Needless to say, everyone jumped on board with that---the parents are extremely young so it's pretty much a given they'll believe whatever the doctor tells them. I really like my SIL but due to other circumstances I am not in a position to say anything because then I'll just give another reason for others in the family to consider me the crazy outsider.

So, the child has healed some over the past couple of years. Since the child was asymptomatic so far as they knew, until the near fatal complications, I fear it's only a matter of time and they may not catch it until it's too late if they go back to the SAD diet.

Thanks for listening. I needed someplace to share this.

I understand your frustration completely. My BFF's little 6 year old nephew is the size of a 4 year old and eats next to nothing but chicken nuggets, pretzels, crackers and such. The word veggie doesn't enter into it at all. We spent 10 days during the summer with them this past summer while they were caring for the little guy and I was shocked at the way the child eats, or doesn't eat I should say. He eats his snacks and then complains of a belly ache. Now they know about my celiac but will they, or the child's mother, consider that the child may have it? Nope. And there is no changing their mind on it. Sad, but sometimes there is nothing that we can do.

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