Hoping Her Son Grows Out Of It

[Worriedwife]

Over the weekend, we had dinner at our locat Outback restaurant. Our waitress seemed unusually knowledgable about the gluten-free products, so we asked her if she had gluten issues. She told us that her son had been diagnosed with Celiac at about 1 year old. I was a bit surprised, as I thought it was difficult to get an accurate result in very young children, but we were glad that she found out early, and could help her son.

Later in the meal we asked how old her son currenly is, and she said he is four and a half. She says that she has his blood tested every year, in the hopes that he will grow out of it. We tried to tell her that he will never really grow out of it. His symptoms may improve, but he will always be allergic, and should never go back to eating gluten, as it will begin damaging him again.

Unfortunately, she did not seem interested in hearing what we had to say. She seemed determined to believe that it is possible that her son will not have this desease when he is older. I felt bad, because she is only fooling herself. But we let the subject drop, since we were strangers, and you can't convince somebody who really doesn't want to change their way of thinking. I'm just glad that she is keeping him on the diet as long as his doctor indicates he still has the disease.

I just wanted to let parents know that once your child has been diagnosed with Celiac, they don't ever grow out of it.

[kbtoyssni]

It is a shame. I hate to think of what will happen to that kid as he grows up, starts becoming symptomatic again and spends ten years getting re-diagnosed. The odd part about the story is they get a blood test every year, presumably so that when he finally tests negative they can say he no longer has celiac. So has the blood test been positive for the last four years? Sounds like that kid isn't really gluten-free for that to happen.

[Guest Rosany]

Poor thing...It is so hard to accept that our kids are going to be this restricted for the rest of their lives but eventually we have to just let go of the what could have been and be happy that there is something we can do about what is. Hugs Hugs to her and I hope she accepts it eventually. Have a great day and hugs to you all.

Hugs,

Rosa

[jerseyangel]

It's a real shame that the doctor doing the yearly testing didn't tell her that the child will never "grow out of it".

[vanillazeis]

Over the weekend, we had dinner at our locat Outback restaurant. Our waitress seemed unusually knowledgable about the gluten-free products, so we asked her if she had gluten issues. She told us that her son had been diagnosed with Celiac at about 1 year old. I was a bit surprised, as I thought it was difficult to get an accurate result in very young children, but we were glad that she found out early, and could help her son.

Later in the meal we asked how old her son currenly is, and she said he is four and a half. She says that she has his blood tested every year, in the hopes that he will grow out of it. We tried to tell her that he will never really grow out of it. His symptoms may improve, but he will always be allergic, and should never go back to eating gluten, as it will begin damaging him again.

Unfortunately, she did not seem interested in hearing what we had to say. She seemed determined to believe that it is possible that her son will not have this desease when he is older. I felt bad, because she is only fooling herself. But we let the subject drop, since we were strangers, and you can't convince somebody who really doesn't want to change their way of thinking. I'm just glad that she is keeping him on the diet as long as his doctor indicates he still has the disease.

I just wanted to let parents know that once your child has been diagnosed with Celiac, they don't ever grow out of it.

I know my daughter has celiac and she therefore will never be able to eat gluten in her whole life. I understand, i really do, but there is still a small part of me that hopes or wishes that this was a misdiagnosis and that she is only gluten intolerant and does not have celiac. I know thats unrealistic, but i think that maybe like grieving a death that denial is just part of the process. Celiac is tough, and everytime i taste gluten free bread i hope that eventually there will be a way for my little girl to one day enjoy it. I would however settle for a "cure" (i say cure, but i am thankful that there is a cure for what my daughter has, the gluten-free diet) or a somehow gluten-free wheat flour I think it just takes a little getting used to... this lady should know better since her kid has been diagnosed for 3 1/2 years. It bothers me that some people have celiac and know nothing about it. My daughter has it and i have read everything i can get my hands on about it. I dont understand people that deal with it everyday and still have no interest. At Bayleigh's school, one of the Pre-k 4 teacher's daughter has celiac. Bayleigh will be in pre-k 4 next year, and im actually requesting for her to not be her teacher, because she seems misinformed about celiac, and i worry what she will allow bayleigh to eat or play with, because she thinks she knows everything. You'd think you would want someone that has dealt with celiac to be your kids teacher...

[Jestgar]

I'm curious what they're testing. If he's gluten-free, everything will be negative. If she's feeding him gluten, she's not doing him any favors...

[taweavmo3]

I wonder too if the doctor may have something to do with why she thinks this way. When my dd had been on the diet for a year (after a positive biopsy), the pedi GI did a follow up Ttg level. The nurse left a message that said "Emmie's levels came back fine, she doesn't have Celiac". I knew better, but a less informed parent might have just assumed all was well and go back to regular food. If parents just rely on doctors for info regarding Celiac, who knows what misinformation they may get. It's sad really.

[Fiddle-Faddle]

I wonder too if the doctor may have something to do with why she thinks this way. When my dd had been on the diet for a year (after a positive biopsy), the pedi GI did a follow up Ttg level. The nurse left a message that said "Emmie's levels came back fine, she doesn't have Celiac". I knew better, but a less informed parent might have just assumed all was well and go back to regular food. If parents just rely on doctors for info regarding Celiac, who knows what misinformation they may get. It's sad really.

Please educate this nurse as soon as possible before she harms a child by telling the parents he doesn't have celiac when he does. This is very important.

Worriedwife, if I were you I would print out some info from celiac.com or from one of the other major celiac websites. Highlight the portion that says that doctors USED to think celiac could be outgrown, and that they now know that it is a LIFELONG CONDITION. And then give it to that poor mom-in-denial.

You could also print out this thread and give it to her....

[Ursa Major]

Worriedwife, if nothing else you sowed a seed, giving this uninformed mother something to think about. Maybe what you said will not leave her conscience alone, and lead to her doing a little research of her own.

It can be overwhelming to hear something contrary to what a doctor has told her and try to serve food at the same time. I hope she will think about it once she is home and has time to think.

[ruthla]

I wonder if some people are confusing Celiac with wheat allergies.

Allergies can be outgrown- but my age 4.5 the chances of that happening are much slimmer than they are in infants and toddlers.

[Electra]

I wonder if some people are confusing Celiac with wheat allergies.

Allergies can be outgrown- but my age 4.5 the chances of that happening are much slimmer than they are in infants and toddlers.

Actually my allergist tells me that it is very rare for allergies to be outgrown. You are right when you say that they can, but most of the time they get more severe and not disappear.

My GI doctor told me a slew of things that the infomational packet he himself handed me conflicted. I have recently aquired a new GI doctor which I hope is better then the last. These are some of the things my GI and my children's PED GI have told me....

*Having two autoimmune difficiency diseases is RARE

*If you had not come in with a positive blood test I would have diagnosed you with IBS and sent you on your way

*Biopsies in children under 3 are very accurate

*If you have severely low B-12 levels (Pernicious Anemia) all you do is have one B-12 shot once a month

*You have to be underweight (due to malabsorbtion) to have Celiac (this one gets me the most because I and my mother were overweight and still had malabsorbtion, but for some reason if you don't look anorexic they don't even consider malabsorbtion)

*You have to have severe diareah to have celiac (this one was also untrue for us, I NEVER had problems with diarea, just soft stools)

*You have to be losing weight due to malabsorbtion to have Celiac (I gained weight dispite being sick all the time)

Something definitely needs to be done to dispell these myths and I really think GI doctors need to start being responsible for learning the appropriate facts about Celiac Disease. They should not be giving out false information like this to unsuspecting parents and families.

[thepeach80]

Allergies are more likely to be outgrown if diagnosed early, like at 1. If diagnosed later like 4 or so, they are likely to be lifelong. I do wonder what yearly test he goes for to check on his 'celiac'. I really think she must be talking about allergies, most do yearly tests for that in children.