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#1 ashesmom

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Posted 08 December 2011 - 08:01 PM

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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#2 divamomma

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Posted 09 December 2011 - 10:00 AM

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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Mommy to 2 Divas in Training
~6 yr old daughter positive Celiac blood test December 2010 (at age 4)~
~Positive Biopsy January 10, 2011~
~Gluten Free since January 11, 2011~


#3 M0Mto3

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Posted 09 December 2011 - 07:22 PM

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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#4 divamomma

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Posted 10 December 2011 - 12:06 PM

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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Mommy to 2 Divas in Training
~6 yr old daughter positive Celiac blood test December 2010 (at age 4)~
~Positive Biopsy January 10, 2011~
~Gluten Free since January 11, 2011~


#5 M0Mto3

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Posted 11 December 2011 - 06:44 AM

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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#6 anna34

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Posted 11 December 2011 - 01:01 PM

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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blood test "borderline" (February 2011)
no further testing
gluten-free (March 2011)
positive response

#7 TBelle

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Posted 13 December 2011 - 03:27 AM

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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#8 domesticactivist

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Posted 13 December 2011 - 10:06 AM

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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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#9 ashesmom

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Posted 04 January 2012 - 02:20 PM

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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#10 deltron80

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Posted 04 January 2012 - 07:58 PM

It may be a blessing in disguise that she was diagnosed so young...
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#11 Darn210

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Posted 05 January 2012 - 05:35 AM

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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Experience is what you get when you didn't get what you wanted.


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