Undiagnosed Celiacs 98%

[1974girl]

So I have read that 98% of celiacs go undiagnosed. Then, I got an email from celiac.com in the last few weeks (I think it was them) saying that a new study shows that undiagnosed people live as long as the diagnosed ones. (I think an older study says different though) The only exception was adolescents. It said that the death rate was HIGHER for the diagnosed ones! They think it might be from higher rate of suicide due to just being different and hard diet to follow and symptoms make it socially awkward. The lady who runs my support group told us that her dad was diagnosed at 98. So, here is my question. I have an 11 year old with no symptoms. She had "simplification" of the villi which apparently is blunting in only one area. Is that so bad? They tested her because she has hashimotos and sometimes they go together. She was tested for celiac at that diagnosis 4 years ago and it was negative but it is positive now. I wish I had not had her tested. I really think ignorance was bliss. They want to now see if she has the antibodies for type 1 diabetis since my dh has that but I canceled the appointment. I don't want to know. There is nothing they could do anyway. They wanted to put her in a clinical trial but I don't want her to be exposed to something in trial. Apparently a lot of people live with it and don't know it. If she could make it to age 98 eating gluten then I would be fine and I'd let her pig out. However, due to the increase in lymphoma scare in other reports and infertility, I am doing it. I know many of you are happy to have a reason for your pain and that makes the diet easier to follow. But I feel like her quality of life has decreased not increased. we have been gluten-free for 4 months and she doesn't feel any better because she never felt bad. Does anyone else here have zero symptoms? Don't worry, I am not going to let her go back on it and I am taking it so seriously to the point of obsession but is it so bad to have celiac if you don't have symptoms?

[pricklypear1971]

Well, I am going to bet she develops symptoms. Most people do. They may not be the ones she thinks she'll develop, but she'll get something.

The biggest thing, which is the hardest to explain, is that with Celiac and Hashis she is on the ai spectrum. Kids don't get it. Adults don't get it. Being ai is the bigger picture. Treating ai is the bigger picture.

Has she met any other Celiac kids yet? Maybe that will help her. I'm really a terrible one to give advice since my son tests negative so far but I know it's brewing if it isn't there already - but I have no bullets since he tests negative. And as of now, he blows me off.

Perhaps she needs to meet other kids in her situation, it's a start?

[love2travel]

I had no obvious symptoms and only found out I have celiac through genetic testing (my sister is gluten intolerant). After the shock wore off, I went strictly gluten free and have been doing so for just over a year. No, I do not feel any better but am so used to being on this diet that I will not go off it. The biggest thing for me is knowing what can go on internally without my knowing it if I ingested any gluten at all.

It is actually hard not having symptoms as I never know whether I have been accidentally glutened. To my knowledge I never have. It was also difficult initially as I felt I had no motivation to go gluten free. Why should I if I did not feel any different?

Ignorance is bliss but bliss can be ignorant. There is no reason for her quality of life to decrease. Know what? Since going gluten free there are things I can link to celiac that I did not before (i.e. several miscarriages, weak tooth enamel).

Keep it up. Keep thinking you are doing it for her own good. Her future is a lot brighter now!

[dani nero]

I'm sorry if I'm going to sound harsh, but I don't get this ridiculous attachment to food. There is more to living than eating. Yes there is a chance she will never get symptomatic, but what if she will? Let me tell you that I WISH my family knew about celiac when I was 11 and had no symptoms yet, then I wouldn't have to be going through what I'm going through now. It's always hard at first, but once you're used to it you stop understanding what the big deal was about. Being "normal" depends on each person's perspective, not the majority's.

I'm speaking for many of us not just myself. What will you tell your daughter if one day she ends up unable to workout from being too weak, or if her body gets covered with itchy watery blisters? "Sorry hun but I couldn't bare the thought of you not enjoying your bread"?

I know I'm sounding insensitive, but I can't understand why you let food dictate the quality of your life. Simply read around the forum and see what some of the these people are going through, and the solutions they have come up with be able to blend in and live happy lives without feeling too sorry for themselves. It would be really nice to avoid living a life with countless unexplained symptoms that have a mind of their own.

[Skylark]

First, if your Dr. suspects type 1 diabetes you NEED to get your daughter tested. You are trying to ignore a disorder that can easily land her in the hospital and possibly kill her. Run, don't walk to the clinic. I have a friend whose daughter developed type 1 at age 13. It came on fast and she went into a diabetic coma and almost died. She was in the hospital twice more before they got the diabetes under control with insulin.

As you have discovered, autoimmune illnesses cluster. Silent celiac may not impact lifespan but it does increase her chances for more autoimmunity. People with untreated celiac tend to develop dermatitis herpetiformis or neurological problems because the autoimmunity can spread from the gut to the skin and nervous system. There is more lymphoma, as you've mentioned. The other HUGE problem for lifelong untreated celiac is osteoporosis. Bones are consistently weaker in people with "silent" celiac (meaning it's not really so silent). My grandmother was undiagnosed. She lived into her 90s but she was partly disabled from osteoporotic spine damage. Long life is not the same as high quality of life.

[1974girl]

I don't feel that it is a rediculous attachment to food. There are food "memories". Jesus even said "I am the bread of life" because their life revolved around bread at that time and they would relate! It's grandma's biscuits and sitting around eating pancakes after sleepovers. It is birthday cupcakes from a bakery and sharing a family meal at the local pizza parlor. It is only drinking the juice at communion but pretending to take the bread so noone would know (yes grandma cried when she saw that!). There are memories in food that she has to get over not just the gluten. It is also more "social" for an 11 year old and I have to hold her when she cries because she feels left out of things. She has to take her own food to church every single Sunday because they have snacks there. She feels "odd". And does anyone rememeber middle school? You don't need a reason to feel "odd". Once she cried because everyone was eating Dunkin Donuts but she waited until night to cry so no one saw her. Yes, we have her gluten-free donuts to take but she still remembers 4 months ago what those real ones taste like. She offered me all of her birthday money ($85) if I'd get her a real donut. She asked me about dating down the road (wayyy down the road) and where could she go on a date.

I just read here where people's symptoms go away almost immediately after starting a gluten-free diet so I guess sometimes I want to wait until her first stomache ache caused by gluten. Then I'd start. But like I said I am not. I dont' want to risk other auto-immune disorders. I have switched shampoos, bought new appliances, and cleaned all cabinets like someone with OCD. But it is still hard. It would be much easier if it had happened to me and not my child. I am just talking it out....out loud.

[1974girl]

I should have been more clear. No, the doctor does not suspect type 1 diabetes. They just asked if I wanted to enroll her in a clinical trial to try to prevent it since her father has it. It would be taking oral insulin every day and nothing guaranteed if she showed the antibodies. Yet, they told me that there are kids who have the antibodies who never develop it. So why worry myself to death for the next 5 years. My husband has type 1 (got it at age 18) and so we do test the girls often. So far so good.

But the risk was too great for me to enroll them in a clinical trial. Have you seen the commercials for all the bladder cancer caused by diabetic pills? Just not going to risk it when she already has so much. But we are extremely vigilant and I have had my DH test her just because she was really thristy once. So we are watching it. But I just didn't want to enroll her in an experimental program. Besides, they already did the oral insulin experiment at another university and it showed no effect at all on if the child developed it or not.

[mamaw]

I have two kids in the family that are celiac... one dx'd at 21/2years with a scope.The other later but both have managed to get through school parties, birthday invites at Chuckie Cheese, school dances, sports event, banquets & so on.. If we make our kids feel different or not like everyone else then that is how it will be to them, Different....

If we make them gluten-free things that are tasty & treats to share with others they are not teased or different..Some kids must take insulin injections duing school, some use crutches or a walker for some disease.. They are the same as any other kid.. We as adults make them feel different by shielding them from life's issues...No one is perfect ..

I wore glasses from an early age years ago.. yes I was called four eyes & teased about my red hair but I some how managed to become a productive adult & a benefit to society..

It is adults who make things difficult , kids are kids, all kids feel weird at some point in life , part of acepting ones self as we are who we are...Some are rich small are poor...the story goes on..

We as parents need to instill values & discuss moral issues & bullying others because of an illness...

Our kids go to youth group & always take their food , there are times when the other kids ask for our kids gluten-free junk because they like it better... Sharing food gluten-free food is a way to break the ice at any event...

Non of us can live in the past life changes daily...

blessings

Small problems is what makes us learn & grow...

no problems , no growth

[pricklypear1971]

I don't feel that it is a rediculous attachment to food. There are food "memories". Jesus even said "I am the bread of life" because their life revolved around bread at that time and they would relate! It's grandma's biscuits and sitting around eating pancakes after sleepovers. It is birthday cupcakes from a bakery and sharing a family meal at the local pizza parlor. It is only drinking the juice at communion but pretending to take the bread so noone would know (yes grandma cried when she saw that!). There are memories in food that she has to get over not just the gluten. It is also more "social" for an 11 year old and I have to hold her when she cries because she feels left out of things. She has to take her own food to church every single Sunday because they have snacks there. She feels "odd". And does anyone rememeber middle school? You don't need a reason to feel "odd". Once she cried because everyone was eating Dunkin Donuts but she waited until night to cry so no one saw her. Yes, we have her gluten-free donuts to take but she still remembers 4 months ago what those real ones taste like. She offered me all of her birthday money ($85) if I'd get her a real donut. She asked me about dating down the road (wayyy down the road) and where could she go on a date.

I just read here where people's symptoms go away almost immediately after starting a gluten-free diet so I guess sometimes I want to wait until her first stomache ache caused by gluten. Then I'd start. But like I said I am not. I dont' want to risk other auto-immune disorders. I have switched shampoos, bought new appliances, and cleaned all cabinets like someone with OCD. But it is still hard. It would be much easier if it had happened to me and not my child. I am just talking it out....out loud.

I know you're thinking it out loud. Scream it if you want to.

When I was dx'ed I was fine with it. Grateful I had a solution. But when it came to my son it just broke my heart. I was a wreck getting the blood draw. I was a nervous cat for two weeks waiting. I was a disaster when some of it came up weird. There isn't a day that goes by I don't wonder and hope that he's truly negative.

From my experience, though, you can't let her see the cracks in your emotions or that you wonder if the Celiac lifestyle is worth it - because kids are like sharks - if they smell blood they'll attack. If she senses, even for a second, that you doubt your resolve on this - your abilities to deal with her or her abilities to deal with Celiac she will use it. It wouldn't make her a bad kid, just a normal one.

So, yes, it's tough. This sucks. As a parent it's one the worst things we face - something we can't kiss away. But it will NOT get better without dealing with it. You can NOT protect her from other ai diseases unless she deals with Celiac.

Is she going to rebel? Yeah. She's a kid. But you're the Mama. You're going to have to play the part, as much as it sucks. A disease like Celiac makes you reevaluate everything. I'd venture to say I'm very different today than a year ago. Celiac just isn't changing her, it's changing YOU and your whole family.

You will find new foods to replace the old ones. You'll figure it out. You'll make new traditions.

[Skylark]

Oh, I misunderstood. I totally agree that you don't want to enroll your child in a clinical trial of oral insulin! As long as you are watching for the symptoms you should be able to avoid a bad experience like my friend had. Her daughter's diabetes was out of the blue because there was no family history and they were not aware of the symptoms.

We ALL understand how miserable the diet is, especially for kids though it's hard on adults sometimes too. This is a great place to come vent and ask for tips and ideas. I was wheat-free as a kid and hated it, but it's probably why I'm of normal stature. I came out negative on the celiac test so I was diagnosed with "wheat allergy" but tests were not accurate so long ago. Birthday parties were the worst because I wanted the cake. Mom sent me with rice flour cupcakes but it wasn't the same.

[dani nero]

I don't feel that it is a rediculous attachment to food. There are food "memories". Jesus even said "I am the bread of life" because their life revolved around bread at that time and they would relate! It's grandma's biscuits and sitting around eating pancakes after sleepovers. It is birthday cupcakes from a bakery and sharing a family meal at the local pizza parlor. It is only drinking the juice at communion but pretending to take the bread so noone would know (yes grandma cried when she saw that!). There are memories in food that she has to get over not just the gluten. It is also more "social" for an 11 year old and I have to hold her when she cries because she feels left out of things. She has to take her own food to church every single Sunday because they have snacks there. She feels "odd". And does anyone rememeber middle school? You don't need a reason to feel "odd". Once she cried because everyone was eating Dunkin Donuts but she waited until night to cry so no one saw her. Yes, we have her gluten-free donuts to take but she still remembers 4 months ago what those real ones taste like. She offered me all of her birthday money ($85) if I'd get her a real donut. She asked me about dating down the road (wayyy down the road) and where could she go on a date.

I just read here where people's symptoms go away almost immediately after starting a gluten-free diet so I guess sometimes I want to wait until her first stomache ache caused by gluten. Then I'd start. But like I said I am not. I dont' want to risk other auto-immune disorders. I have switched shampoos, bought new appliances, and cleaned all cabinets like someone with OCD. But it is still hard. It would be much easier if it had happened to me and not my child. I am just talking it out....out loud.

I understand you're speaking from frustration because you hate seeing your daughter deprived, but I still can't understand why all that you've mentioned outweigh someone being able to escape a lifetime of symptoms.

[dani nero]

I don't feel that it is a rediculous attachment to food. There are food "memories". Jesus even said "I am the bread of life" because their life revolved around bread at that time and they would relate! It's grandma's biscuits and sitting around eating pancakes after sleepovers. It is birthday cupcakes from a bakery and sharing a family meal at the local pizza parlor. It is only drinking the juice at communion but pretending to take the bread so noone would know (yes grandma cried when she saw that!). There are memories in food that she has to get over not just the gluten. It is also more "social" for an 11 year old and I have to hold her when she cries because she feels left out of things. She has to take her own food to church every single Sunday because they have snacks there. She feels "odd". And does anyone rememeber middle school? You don't need a reason to feel "odd". Once she cried because everyone was eating Dunkin Donuts but she waited until night to cry so no one saw her. Yes, we have her gluten-free donuts to take but she still remembers 4 months ago what those real ones taste like. She offered me all of her birthday money ($85) if I'd get her a real donut. She asked me about dating down the road (wayyy down the road) and where could she go on a date.

I just read here where people's symptoms go away almost immediately after starting a gluten-free diet so I guess sometimes I want to wait until her first stomache ache caused by gluten. Then I'd start. But like I said I am not. I dont' want to risk other auto-immune disorders. I have switched shampoos, bought new appliances, and cleaned all cabinets like someone with OCD. But it is still hard. It would be much easier if it had happened to me and not my child. I am just talking it out....out loud.

Also, getting stomach aches might not be one of her symptoms, so she might be developing other serious issues but not know about them because she's not getting tummy aches. I've never been diagnosed because I never developed the classic symptoms, but look at me now.. I can't work out without getting weak, I never got a period without medication and if I hadn't found out about gluten I would have still been thinking I was infertile. My point before and now are that a lifestyle revolving around food can be adapted, it's never easy because no one can see it at first, but it eventually does because we're adaptable creatures. A lifestyle with painful symptoms is harder to adapt to though.

[MitziG]

She is not asymptomatic. She already has a second autoimmune disease. How many would you like her have?

I agree with daninero- her quality of life does not have to be determined by what she eats. Yes it is an adjustment, and no, being gluten-free is not convenient. But your attitude about it will affect hers. Myself and my two kids were dx a year ago. One is 8, one is 13. Be thankful you caught it before she developed MORE symptoms because I promise you, there were many times over the last 30 years when I felt so awful death would have been welcomed. Death by intestinal cancer is rare, yes. But phenomenal sufferring is not.

You are the parent. It is your responsibility to make sure she understands this is not something she can blow off. If she does she will likely face many complications down the road- infertility, rheumatoid arthritis, ataxia, chrohns disease, MS, mental illness, lupus, Sjorens....the list goes on and on.

Both of you would do well to consider counseling. There is no such thing as a "little bit celiac". The sooner you both come to terms with it and accept that, the sooner you can be happy because you have been given the gift of good health for now!

I hope you will spend some serious time resxearching on this board so you have a better understanding of the seriousness of this disease. A celiax dx is not a fate worse than death. But being an un-dx celiac is!

[Victoria6102]

I'm a teenager and I understand that it's hard to bring your own food with you for everything you do with your friends. But her health should be more important to you than her having friends. Getting celiac has shown me who my TRUE friends are! And now, gluten free cakes that I hated before, now taste normal to me. If you don't make abig deal out of it then it won't seem like such a big deal to her. Tell her her food looks good, tell her she is lucky to be one of the kids who found out she had celiac disease and didn't have to wait til she was older to figure it out!

Thr doctors believe I got celiac 2 years before I started having symptoms. After those 2 years I got very bad symptoms and wasnt diagnosed for another 4 years. I WISH I had found out before I got so sick. I am still recovering now! Just trying to help you see that it's better to catch it before you start having serious problems from it! Good luck! Don't worry it will get easier and it will get better!

[Ninja]

I apologize in advance if I go on a bit of a rant as the topic of being "different" is one I am acutely aware of.

Ask yourself though: was it really the food that made those experiences so special? Sentiment can be found anywhere