Please Help... I'm In Shock

[emja73]

DD is 3 and has had chronic constipation since she was a year old...she had no other symptoms, just constipation. So we went to a g/i doc and he didn't think she had celiac, but routinely tests all of his g/i patients just to check... her results came back at 89, so he is pretty certain she has it. Is there a chance of a false positive? Could the number mean something else?

Ok, I know it's dumb, but she is happy, not lethargic, a perfectly "healthy" and active toddler, so here's my question. How diligent do we have to be on the diet? I mean, I keep reading about having to buy a new toaster so they dont' get a bread crumb... but she's been eating wheat her whole life and now she can't even have a bread crumb? And what abotu birthday parties, she really can't have a piece of cake once every coupel of months so she fits in with her friends? I am just so sad for her that she will feel so different, will have to have her special pizza every time we go somewhere people have pizza... ugh

I am very happy to cook gluten-free and help her follow a gluten-free diet, I just wonder if a little "treat" once in a while will really hurt... she is basically asymptomatic, and if we hadn't had the test run she probablyu wou'dve lived her life never knowing (doc said many adults dont' even know they have it) so I guess I just wonder how bad it is to limit gluten but like if we're at a restaurant let her have chicken nuggets once in a while...

Thanks for your input... I feel like I've been hit by a truck

[eKatherine]

A GI who routinely tests all of his patients for celiac? Now I am in shock.

Your daughter only looks healthy. The fact that she has no other apparent symptoms does not mean she's normal and healthy except for constipation. You need to take her off gluten and keep her completely free of it in order to prevent many possible complications.

Many treats can be made just as good without gluten. You should explore the recipes on this site.

[Guest cassidy]

If her test came back positive then she has it.

There is an article on this website that says 1/48th of a piece of bread is enough gluten to cause damage that takes 6 months to 1 year to heal. So if the only consequence of eating gluten would be constipation, that wouldn't be terrible. But, the hidden consequence is the intestinal damage that takes time to heal. Once she starts healing you may not realize how bad she felt. All sorts of things that I didn't think were related went away when I went gluten-free.

She can't cheat and she does need a separate toaster. It is sad but you can make a cake and bring a piece for her to take to birthday parties. I think the social aspect is the hardest for me. I get nervous when a friend invites me to dinner or a party. I just bring my own food and I'm fine but it has to be difficult for kids not to fit in. I was on a restrictive diet as a child (we didn't realize I had celiac so my parents tried all sorts of diets) and it was hard not to be able to have pizza or cake or anything else. It seems like several teenagers on here that went gluten-free when they were kids are very well adjusted and don't understand why some of us adults think it is such a big deal.

I look at gluten as poison. One little spect and I get very sick. I certainly don't see it as a "treat' and I would never voluntarily eat it. I think once you accept things you will realize it isn't helpful to give her some gluten.

It is hard to accept but it will get easier.

[flagbabyds]

Hi, I agree with the first posts and I am one of those teenagers who got daignosed early and I am very fine now and have been on the gluten free diet for some time now (almost 15 years).

She NEEDS to go gluten free as soon as possible, she is doing damage to her intestines everytime she eats gluten, weather or not you can see it. She may not be sick now, but maybe in a couple days she will start getting sick and you will not know why, but if she goes completely gluten-free right now, you may even notice that she feels better than she did, even though she didn't feel sick, she may not have felt all over great.

Most asymptomatic people start getting symptoms once they have been gluten-free for some time, or they start noticing that their symptoms appear.

Go gluten-free, go all out gluten-free< you should see the results soon adn they should help you out, if you have any questions on the social thing I probably have been through it cause i have been through the in's and out's of the diesease when i was her age.

[tarnalberry]

Cheating every once in a while, getting contamination from a toaster, and not being totally compliant on the diet will - regardless of her external symptoms, as many celiacs appear asymptomatic - cause a chronic, lasting, longterm autoimmune reaction where her body is attacking her intestines, and causing damage. She won't absorb all her vitamins efficiently, and may have (at best) sub-clinical chronic vitamin deficiencies, long-term inflammation in the gut, and will have significantly increased risks of other autoimmune diseases (including diabetes, thyroid disease, and arthritis), intestinal cancers, and long-term nutritional deficiencies (such as anemia or osteoporosis). Unfortunately, cheating every few months and getting contaminated regularly is - to the gut - the same as not treating the condition which shortens the lifespan, on average, by 10 years.

Celiac is one of those things that *can* be very serious, but doesn't have to be if it's treated properly. Rather than food anaphylaxis allergies that can kill you very quickly, it's a food issue that can kill you very slowly, from related causes. I don't say all this to scare you, but to put in perspective that it's a very long term goal that you and she are working towards - a full life without medical problems that could have been avoided - and you may not see anything in the short term. It's hard to always work towards something 50 years out, when all you see is today and tomorrow and next week, but that's how it goes with this condition when you're asymptomatic.

[GFBetsy]

My mother's main symptom (that she noticed) was constipation. She wasn't diagnosed until she was about 50, and even then she wasn't looking for answers for herself. She only got tested because my sister was having symptoms. Long story . . . anyway, her celiac had also caused nasty anemia (her doctor told her she had the ugliest blood he'd ever seen) and 40% bone loss in her hips. And since going gluten free, she has also discovered that gluten makes her anxious. She can now deal calmly with all sorts of things that would have upset her greatly in her wheat-eating days.

I guess what I'm saying is that, right now, you may only see the constipation. But there are other things going on inside of her body that are likely to lead to problems - major problems - down the road. It is not very likely that her test was a false positive. Ask your doctor about what else you should do for confirmation of the diagnosis, but prepare yourself to find out that this really is a problem for her. Also, since this is a genetic disease, it is very likely that some other member of your family (you or your husband, one of your daughters aunts or uncles, or cousins) also have this disease. You and your husband, at the very least (and any other children you have) should be tested for Celiac.

It will be okay. My friend has 5 kids who all have celiac. Her oldest is now 7 1/2. She always makes cupcakes for him to take to parties, makes pizza at home, etc. His friends think he is incredibly lucky that his mom makes such yummy food for him. They always want to share his lunch. In fact, one day she was dropping him off at a birthday party, and the birthday boy's mom told her "My son told me that I needed to ask you to teach me how to cook gluten free so I can make really good cakes."

And if you start her on the diet now, it will be normal to her by the time she goes to school. If you let her cheat, she will learn that you don't think cheating on her diet is such a big deal, and she is likely to cheat on it all the time when she is out of your sight.

This will be okay. You can do this. You aren't the only one on this road . . . and it helps a lot to know that. Ask questions here if you have them . . . we like to share knowledge!

[AndreaB]

I agree with the other posters. She needs to be totally gluten free for life to prevent the damage that will be incurred internally. It is difficult at first, but as you learn, it will get much easier.

There are numerous gluten free things that can be made to replace her favorites. If she is raised knowing the damage that could incur with cheating, she will be less likely to cheat.

My family was tested through enterolab and tested positive except for my husband. We all have one or two celiac genes. My older children are still learning (7 and 4) but don't want to get sick. None of us had symptoms to speak of before going gluten free (it was the baby's eczema that lead us to this). We do get sick now if we get even a little gluten.

[Ursa Major]

Hi Emja, and welcome to this board. As the others said, it is easier than it now looks to you, you can do it.

These are some of the things to look out for, to make sure your daughter is 100% gluten-free. You absolutely need to buy her a new toaster, it isn't possible to clean the old one well enough to avoid cross contamination. You can't drain her gluten-free pasta with your old colander, as gluten is very sticky (and is used to make glue because of that), and you can't clean your colander properly. Don't use your regular, wooden cutting board to make her gluten-free sandwiches, or stir her food with your old wooden cooking spoons. All of those will contain hidden gluten. The same goes for scratched non-stick pots and pans.

You will need to check her personal care items, and replace the ones containing gluten. These include shampoo, conditioner, bubble bath, tooth paste, lotion, soap, chapstick etc. Look for things like wheat germ oil, barley extract, oat bran (aveeno).

You have to avoid everything that contains wheat, barley, rye and oats. Especially wheat and barley hide in many processed foods.

Check out Nini's 'newbie survival kit', it will save you a lot of time and anxiety. Here is the link to her website:

Open Original Shared Link. Scroll down to the bottom to find the links.

I am very glad your daughter was diagnosed before she got really sick. Some children don't get diagnosed until they're almost dead and have damage that may never get completely undone. I've had symptoms when I was three, but was never diagnosed until I diagnosed myself last year, at the age of 52. I've never known what it is like to feel well, and developed many other problems. You have an amazing GI, there are even a lot of GIs who are quite ignorant when it comes to celiac disease. He ought to get a medal!

[Nic]

My son was "just" constipated from the time he was an infant until around 4. Never knew it could be a symptom of Celiac even though my dad had it. Then he turned 4. Well that "just" constipation turned into something I never want to see again in my lifetime. My poor kid was in agony each time he had to go to the bathroom. He would shake, sweat, and scream in pain. He would slide off of the toilet and onto the floor in this sweaty heap. He would spend days running the bathroom, holding his bottom, crying and yelling for us to help him. Eventually he would be on his hands and knees trying to get to the bathroom. No one knew how to help him. Enimas didn't work so forget about stool softeners and laxatives. We took him to the ER once because the doc could hear him screaming over the phone. They gave him 4 enimas that day. He pooped a pebble. So what started out as "just" constipation turned in to this horrific experience filled with invasive procedures (colonoscopy, sigmoidoscope, barrium enima, enimas, rectal exams) that put him on the couch of a psychologist office this summer because he is now afraid to tell me when he is not well. I am sorry if it sounds like I am coming on strong but I want to to hear what constipation can turn into. Now if he is glutened even once the syptoms start again. Be happy they discovered it while she still looks and acts well because it turned for us very quickly. Good luck with the diet but the good news is that they do adjust quickly.

Nicole

[TCA]

You've already been told about being 100% gluten-free, so I won't repeat their great points. I just wanted to welcome you! We've all been in the panic mode before, but it does get easier. I just keep gluten-free cupcakes and pizza in the freezer so we can grab a treat whenever needed and not have to stress about it. My signature line has a link to a thread we started to help the newly diagnosed. Go there and read. I think it may help you get started. Good luck!

[Guest nini]

I'm glad your daughter's dr. found it early. You should consider yourself lucky. I know you feel sad now and will go through a grieving process for her and there will be times where a favorite food that has been safe will have their ingredients changed and will no longer be safe.

It will be ok. My daughter was 3 when we found out, and she is now a very healthy 6 year old. She loves the gluten-free diet and the yummy gluten-free goodies I make for her. Her friends are very protective of her at school and make sure she doesn't get exposed to gluten.

Yes you do have to be THAT vigilant, yes it's THAT serious, but it's not that bad. And since it's genetic, every first degree relative of hers should be screened for it. (and even if the test results are negative the rest of the family may benefit from the diet as well)...

[mouse]

I just want to welcome you to the forum and I agree with everything that has been said. This is not something to only do partially. The diet is all the way or none at all. I was so sickly as a baby and then as a young child. No one thought to mention Celiac to my parents and until my diagnosis at almost age 62, I had never heard of it. It is really too late for me, but not for your child. I only wish someone had told my parents when I was three and I could have avoided the life I now lead.

And really I have found that the diet is not that hard. There are great foods out there that are safe for us to eat. Some great pasta and I even buy the pizza dough all ready to add my ingreds. to (Kinninnick - sp). My husband and granddaughter eat them and say they are good. My whole house is gluten free, except for my husbands bread, which is kept in a tupperware container and also his frozen waffles. And he does have his own toaster.

There are so many mixes you can buy for deserts and the gluten-free recipes on here are awesome. I keep printing them out, hoping that some day I will have the energy to make them. I just printed out one for funnel cakes. And look at the donuts that Ursula has made.

This is all doable and I wish you and your daughter good health.

And your doctor sounds wonderful. Wish he had been mine 30 years ago, when things started going bad.

[tinap]

hi - and welcome. i am new to the board as well.

my 5 year old was diagnosed 7/06 with celiacs. as everyone else has stated - it's very important to get started on the gluten-free diet as soon as possible.

kids are amazingly resiliant and change is easier for them than for us. i cried for a week thinking about how she would never be able to enjoy a birthday party, a sleepover or the after game pizza. the jokes on me because she is doing great and never missed a beat when changing her diet. she is too young to know what is gluten-free and what is not, but smart enough to ask about everything (away from home) before she eats it. and it's much easier to change her diet now while you can control it and it becomes a way of life. i dont know how parents of pre teen or teenages do it.

same as posted above - always have frozen treats on hand. the other kids think it's cool that she brings her own. and i have had a few parents who have said their kids want to bring their lunch to daycare too!

i would recommend reading "kids with celiac disease" by danna korn. i also found "gluten-free diet - a comprehensive resource guide" by shelley case to be helpful. and look to see if you have a local support group - they have incredible resources and information.

and you will be very surprised how many other celiac kids and adults you will meet along the way. we all help each other during this journey. we've all been where you are now and it does become a way of life very quickly.

[Nic]

  tinap said:

and it's much easier to change her diet now while you can control it and it becomes a way of life. i dont know how parents of pre teen or teenages do it.

I agree with this statement. Whenever I eat something gluten free I am comparing it to the gluten version. Like the bread crumbs I keep bragging about. I think they taste like the real thing. But they are the real thing to my son because he will never remember the gluten version of anything. They are lucky in that sense to be diagnosed so young. My father was 50 when diagnosed and does not enjoy much of the gluten free food that is not naturally gluten free.

Nicole

[Nancym]

Some people don't have obvious symptoms that are terrible but the long term damage can happen to almost any organ in the body (See the Gluten File for more info) or it can cause autoimmune diseases. Your daughter can have treats but make them gluten free treats.

Chances are you or your daughters father may also have an issue but you don't realize it. It might be worthwhile to take the whole family gluten free and see how you feel!

[Nikki2003]

  Nancym said:

Some people don't have obvious symptoms that are terrible but the long term damage can happen to almost any organ in the body (See the Gluten File for more info) or it can cause autoimmune diseases. Your daughter can have treats but make them gluten free treats.

Chances are you or your daughters father may also have an issue but you don't realize it. It might be worthwhile to take the whole family gluten free and see how you feel!

Nicole actually got ahold of some regular cheerios,And I think she ate some,She has been completely gluten free since the end of july. But I can tell she ate some on friday afternoon,Because friday night she was up screaming like her belly hurt and she got constipated then diarhea again and she even had a low grade fever. Last night she only got up 1-2 times. But I feel bad because she probably has been felling much better now a relapse.

She got a hold of them because my Mother in law was up visiting and she brought up some cheerios to her room for alivia to eat at night if she got hungry(I did not know this). But neither of them brought them back down,So when nicole was playing up there she found them and ate some ( I am pretty sure of it).

Celina

[grapegrace]

i work in a lab and learned all about celiac disease in school, but i was in denial about my son having it. i cried when the results came across the fax. nobody wants to hear that there is something wrong with thier child. i stared the gluten free diet right away, but i have been reluctent to do all the other "stuff" like getting a new toaster. gavin has only been gluten pretty much free for about 2 and half months, but i can already see a difference. he has put on 3 lbs since going gluten free. (he hadnt gained one single pound since he was 11 months old). you truly do have to mourn the loss of your once "normal" child. and that is the hardest part.

[lonewolf]

Welcome to the board! You've gotten some good advice. I wish that someone had discovered that I had a problem when I was 3 and apparently healthy. My health broke down completely at age 32 when I had 3 small children to care for.

I wish I had known that one son and one daughter were gluten intolerant when they were 3. Maybe my 15 year old daughter wouldn't be the shortest one in her high school class and maybe my 11 year old son wouldn't struggle with attention problems (better since gluten-free), bedwetting and digestive issues.