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Hi I am a mom of 2 and my oldest was just diagnosed with Celiac disease. She is 5 and has never had an issue with food or stomach pain or constipation before July of this year. That is when we took her to a gastroenterologist who ran the test which came back very high (I am not sure what it was called, but they said normal # was 1-19 and hers was over 150) So 2 weeks later we did the biopsy and it was confirmed. I was tested and my other daughter who is 3 was tested and both our #'s came back normal/negative. My husband won't get tested, he just decieded to go gluten-free all the time where as me and my other daughter have not completely made the switch. I am pregnant with our third, so I just can't do it right now but we still base our meals all gluten-free, and of course I have quit buying all the cookies/crackers/doughnuts/junk that we use to enjoy :) But it is still hard. She is doing well with it, surprisingly but it is hard around the holidays. My extended family doesn't really get it/support it and I know it is hard for them and I don't expect them to make every single thanksgiving and christmas dinner entirely gluten free, it is just frustrating at times. She only had mild symptoms, and I haven't seen a big change in her yet. We are suppose to get her levels re-checked in 6 months, it just seems so far away. I guess I am just venting, and telling my story to someone feels nice; I have been coming on here alot looking up foods that are o.k. or not o.k. Gluten free foods are so expensive! Another thing to be stressed about. I can't stop worrying about like sleepovers when she gets older; I mean what am I suppose to do, pack 3 meals for her everytime? I am going to be like one of THOSE moms. I just don't want her to be viewed as "different" The girl who can't have pizza at the pizza party, or even cake for that matter!!! It is just going to be such a struggle for us;...Am I alone feeling like this?? No one else in our family has Celiac or gluten-intolerance. I need some support!!!!

Does it get easier??

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I feel the same. My 5 year old daughter has celiac and nobody else in our family. It was extremely hard adjusting at first but almost one year later I can say everything feels normal now. Yes she is different but other people have things that make them different too. I worry about things like dates, sleepovers etc but I try to take things one day at a time and not get too ahead of myself. My daughter seems to be handling it all very well. We make sure she has treats that are like other people and we all eat gluten free at home so she isn't that different. Hang in there! PM me if you want to chat more.

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I am fairly new to this as well. My 17 month old is gluten intolerant (Celiac's is very hard to diagnose in very small children). I am starting to get anxiety over things like crumbs and using flour to bread chicken. Right now we feed her different meals (she is also a picky eater), but I don't know how long this is going to last. I think we just need to work at becoming more gluten-lite in my house. Right now her diet is the only one that has changed.

The rest of our family hasn't been tested. If I had to guess my husband may also have Celiac's. He has struggled intermittently with ulcerative colitis for the last 12 years. He also has Type 1 diabetes. He is very resistant to being tested. Denial.

Should I have my two older children tested? They are very healthy and good kids, but have had some bowel issues.

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You can not be "gluten lite" it's all or nothing. Any tiny amount will make someone sick so yes you need to worry about crumbs and flour etc. Your whole family should be tested. Has your 17 month old been tested? Everyone should still be eating gluten before the test otherwise the results will be skewed.

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Yes, my 17 month old has been tested and she tested negative. She had been gluten free for 3 months and went on a gluten trial for 2 months. Although her bloodwork was negative she was quite symptomatic and the GI doc agreed that she has issues with wheat. The ped and I agreed not to push it any further because she had failure to thrive because of gluten (or wheat-according to the GI doc).

As for gluten-lite, I just mean that I want to get rid of regular flour and decrease the amount of gluten in my house. She is on a completely gluten free diet. We avoid cross contamination as much as possible. It is just really hard to get rid of all gluten in one foul swoop in a family that is used to eating that way. I understand that in the long run it will be best for her if we are all gluten free, but that is not the easiest thing to change when we all feel fine. In other words, like I said before, we are working on it.

As for the rest of the family, I would like to have everyone tested. It may be hard to convince the dr to test everyone, since at this point no one is diagnosed with Celiac.

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Hi. I'm about 9 months into this celiac thing. My DD was diagnosed at age 5 back in February. DH and DS continue to eat gluten, while DD and myself are gluten-free. Here are my recommendations for you:

1. To save yourself some time, try to make dinner entirely gluten-free for everybody. Making two dinners is exhausting and there are a lot of delicious meals that are gluten-free.

2. Think of three easy gluten-free dinners that you can throw together in a pinch.

3. Clear the house of all baking ingredients/mixes that contain gluten. This includes flour, cake mixes, pancake mixes, boxed stuffing etc... Wipe out your cupboards and counters. Basically, anything that could contaminate your counters, cutting boards, pots and pans needs to go. I gave a lot of stuff away to friends. If the gluten eaters want baked goods, they can purchase them from a bakery and clean up after themselves. Don't allow the stuff to be baked in your house.

All this being said, if it's still not working, you may need to go completely gluten-free in the house. We haven't had to do that, but do take all the necessary precautions to prevent cc.

I hope this helps some.

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Hi hun,

YES it does get easier. My oldest was diagnosed at 14 months (Tests for children under 4 can be unreliable)he had a positive blood test and positive biopsy so all my children have been easy to diagnose. He is 14 now and YES it can be hard on them with their social life but you just need to teach them the strong importance of sticking to the diet, even if they think they wont feel sick, their body will still react in a bad way. My 11 yr old was diagnosed at 7 and he has never complained yet over it. And out of my Identical twins girls 1 so far has it and was diagnosed at 18 months. We have had a few tears but she can explain to everyone that it has to be gluten-free food (Although she did try to convince me this morning she could smell the lollies were gluten free, when they werent haha)

Anyway the whole gluten-free food becomes the "norm". Children deal with this stuff heaps better then any adult I have seen diagnosed. You will learn how to subsitute foods so they dont miss out and dont have to be different. As to sleep overs, my children dont have many at friends houses as most are too worried in feeding them but you can always come up with plans of dropping off after dinner and bring their own breaky and snacks. Their friends will be very accepting and curious of it. Close family normally try to make some sort of effort but I have found you cant rely on people so I just bring food where ever I go unless I know they will have food there for them that I trust.

I have been dealing with the whole gluten-free diet for 13 years and I dont think twice now (Although feeding teenagers gluten-free food is sending us broke haha) Good luck with it all and trust me it will all settle soon (Sorry if I rambled on a bit)

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We've been gluten free over a year now and my kids (ages 11 and 12) have adjusted very well. They go to sleepovers, sleep away camps, classes... basically anywhere they want to go. The difference is we send all their food. They have permission to snack on fresh fruit and veggies that are offered in a pinch, if they wash them first. There have been a couple times where our son has gotten glutened (from a dish or table), but overall he's very careful and has been safe.

It's normal to feel worried about these things and not want to be different. My son doesn't like that aspect, but he feels so much better that he really is happy to be gluten-free.

I've written some posts about the kinds of feelings you seem to be having (as well as practical articles on being gluten-free) on the blog linked from my profile, you might want to check it out. Look for "Crazy Diet People," "Mother Guilt," and "Our Story" :D

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Thanks everyone...It is getting easier day by day, she was accidently glutened on Christmas night, and also the other day with some gold coin candy, but all in all she is doing great; Never complains. I guess it upsets me more then it does her! I am still very anxious to get her 6 month results back to see if her numbers have gone down but so far it's been almost 3 months so 3 more to go....I have slowly turned my kitchen to almost completely gluten free...we do keep some regular bread in our cupboard for my 3 year old because she still asks for it and the gluten free bread is so expensive I don't want the whole family on it but as far as baking, flours, cereals, bread crumbs, snacks and treats we are all gluten free. Am getting use to it too, but while my daughter is at school me and my youngest are eating Papa Murphys!

haha

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It may be a blessing in disguise that she was diagnosed so young...

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To save yourself some time, try to make dinner entirely gluten-free for everybody. Making two dinners is exhausting and there are a lot of delicious meals that are gluten-free.

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Clear the house of all baking ingredients/mixes that contain gluten. This includes flour, cake mixes, pancake mixes, boxed stuffing etc... Wipe out your cupboards and counters. Basically, anything that could contaminate your counters, cutting boards, pots and pans needs to go. I gave a lot of stuff away to friends. If the gluten eaters want baked goods, they can purchase them from a bakery and clean up after themselves. Don't allow the stuff to be baked in your house.

This is what we do . . . all baking and cooking is gluten free. However, we are not a gluten free household. I buy regular gluten bread and cereal and snack crackers, etc for the gluten eaters. We take precations against cross contamination.

Sleepovers have not been a problem. At this point, my daughter has been gluten free for 4 1/2 years. Her friends are well-aware of her diet. She usually eats at home before the sleepover, takes a snack to share (this is usually microwave popcorn), and takes a dry cereal for breakfast (one of the gluten free chex or the gluten free rice krispies). She's really good with her diet. She knows she can have some fruit or yogurt or string cheese at her friends houses.

Usually mom's (of a new friend) will check in to see what is OK and I will give a few suggestions of stuff that they may already have on hand or would not be a weird thing for them to get and use up . . . and preferably stuff that is individually wrapped so I don't have to explain about cross contamination . . . Stuff like the string cheese and gogurts and popsicles.

We are getting past the big birthday party phase but when she did go to them, if they were doing the pizza thing she would take an Oscar Mayer snack-sized nacho cheese lunchable. Personally I can't stand these, but it's a normal looking food and quite acceptable in the fact that most kids "want" (I don't know why!) lunchables. . . and the frantic mom hosting wouldn't have to worry about preparing anything for her. I would also send a gluten free cupcake . . . all decked out with sprinkles and normal looking . . . so all was good.

I will also say that my daughter has never been embarrassed about her diet. She's very matter-of-fact about what she can and can't eat. Never expects someone else to produce safe food for her. She's reading labels. I have her order in restaraunts so I know she can do it when she's on her own. I do think there is an advantage to an early diagnosis. It truly is their norm.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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