CELIAC DISEASE my dd just got diagnosed

cbsmommy

Thu, Jun 06 2013, 8:50 pm

amother wrote:

thanks so much cbsmommy! I really appreciate you giving of your time to help me get a glimpse of whats coming up... it means so much to me to hear someone btdt and so optimistic.

Your welcome. And I PROMISE this isn't "game over". You are going to make a new normal. It'll take some time, but it'll be ok -- you can't always promise that things will be ok, but Celiac Disease is the ONLY (how crazy is that?!) autoimmune disease that can be kept in remission 100% without ANY medicines!!! Children with other diseases (ch"v) need medicines that can have difficult long/short side effects, expenses, etc, and the medicines don't always work. Or you need to try them in different combinations. Right now you are doing a lot of doctor shlepping, but people with Celiac Disease don't have to visit their GI doctor for frequent check ups. Many other autoimmune disorders require weekly, monthly, bi-monthly, bi-yearly visits. Celiac Disease = maybe once a year (my regular doctor does my yearly blood test, I don't really need to touch base with my GI now that I'm firmly diagnosed and good-to-go).

amother wrote:

now we have our gastro apt tomorrow - I didn't advise dd yet as she's the worrier type.... hope that's smart, I'll tell her in the morning" we're going to another doctor to check your height as maybe they're some foods that you can't eat as its not letting you grow"

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In my opinion, always always always let a child have advanced notice about a doctor's visit and why the visit is required. That being said, telling her in the morning that she needs to get her height checked again counts in my book as being advanced notice! Sounds like a good plan to me! The one thing you might also want to throw in is the hypothyroid (if you've already started having a conversation about that).

amother wrote:

all I'm doing is crying....my mom tells me I can't fall apart I must be strong..I'm usually such a strong person but this is my kid! not me! I feel so bad that my heart wants to break....I know its not the end of the world but still.....

1) Remember, I threw a tantrum and literally pitched a cookbook against the wall. You'd be "not normal" if you didn't react to this news! That being said...
2) B'Sha Tovah! The hormones will do it every time! Tell your mother (and the kids) that it's pregnancy hormones that are making you extra weepy.
3) You might want to consider talking with a therapist on the side. I'm guessing that one of the problems you are feeling is guilt. After I was diagnosed, my parents and sibs got screened for Celiac Disease (by the way, in case you haven't read about this yet, that's going to be step #2 in this process. There's a 25% chance per sibling of a child with Celiac Disease also having Celiac Disease. Your daughter also didn't pick up Celiac Disease from the next-door-neighbors the same way that she picked up strep or lice last year. Unless she is adopted, you and DH are going to need to be tested, as will your other children. We'll cross that bridge together soon, and their are LOADS of wonderful support groups that you can lean on!) But, anyway, back from my tangent, one of my parents was positive for the gene, and said parent felt extremely guilty over my diagnosis. Remember -- it is NOT your fault that your daughter has Celiac Disease. It is not your fault if in two months from now you "mess up" and she gets sick. Mistakes WILL happen. Things WILL get contaminated. You WILL move on.

amother wrote:

anyway thanks for your replies.

amother

Plum

Wed, Jul 17 2013, 7:37 am

cbsmommy: I'm not the OP, but I can't thank you enough for what you wrote. Such amazing and helpful guidance.....Thank you, thank you.

My family is sort of backwards on this: dd had an endoscopy two weeks ago which showed blunted villi, but, b/c GI doc and I were so sure that it was IBD (very strong family history), we now need to go back next week and get the bloodwork done to show if it's celiac or something else (which I didn't know that other issues may also blunt villi)!

Last edited by amother on Sun, Dec 25 2016, 11:44 am; edited 1 time in total

spinkles

Wed, Jul 17 2013, 8:44 am

There are so many delicious GF foods! It'll be an adjustment (and rotten timing with your pregnancy!) but you can do this!! Hug

B"H they figured out what was going on so you can get your dd what she needs.

amother

Wed, Jul 17 2013, 9:57 am

Hatzlacha to you! Hug

My dh is celiac. It doesn't cause any problems if she stays away from the list of foods. The hard part is going to the pizza shop with the family and ordering a tuna salad. But, that is the hardest part. She will live a completely normal life without making hamotzei. Some celiacs, however, can tolerate oat which is a gluten look alike, but, not real gluten. If so, she can change all her carbs over to oats and make hamotzei. Normal cakes can be made with oat flour and they make oat noodles... Take it as a food allergy. It's a bit hard to cook different, but, many dishes are adaptable. Desserts are the hardest to adapt! If you ever find good ones, (that aren't ice cream or too expensive to make!) please post lol!!!

Don't even think about chrons or colitis. They are a totally different ball park and BH you aren't there. My father has both. BH you are not there and never will be --the two are very different. They are a constant inflammation of the large and/or small intestine. Very different. Don't think about it.

Beh this will start her on positive growth. I wish you lots of hatzlacha!

amother

Mon, Aug 05 2013, 7:15 pm

hi op here! I was away and didn't have internet access- thanks everyone for your support....seems like it is celiac and we are doing our best to figure out how to start.

the main thing that I'm concerned about is bread - how do replace it? is it better to buy the frozen one or is it worth it to buy a bread maker and do fresh bread daily? is it hard ? how does it taste?

thanks for all advice - I need it all!

4Sisters

Thu, Aug 08 2013, 4:49 am

My dd likes rice bread, but it is certainly not the same taste as wheat bread. Toast it well!!!! I would go with one of the many GF choices for bread, rather than start making my own, but ymmv.

amother

Sat, Mar 14 2015, 6:47 pm

New mother here. I am so grateful for all the great information here. I am wondering how you and your daughter are doing OP, a year and a half later? My 15 year old daughter was just diagnosed with celiac this past Monday, and it has been a really hard week. lots of crying and anger on her part, and stress on mine. I am wondering how long it took for you all to get into the swing of things and if it is easier now. Any tips for a newbie?

workaholicmama

Sat, Mar 14 2015, 6:54 pm

My almost 5yr old dd was diagnosed with celiac at 19 months. BH she's doing great, you can pm me for more info and support.

4Sisters

Sat, Mar 14 2015, 8:01 pm

Again, I'm not OP, but my dd is doing great, b''H!!!! She hadn't gained weight in a year, and now, in less than two years gained 40 lbs. Her tummy no longer hurts and she has adjusted well to the new foods. I'm not going to say there aren't times when she looks at what her siblings/friends are eating and doesn't want to have it, but, b''H, overall, it's been pretty easy (for all of us!).

Hatzlacha to all of you new to this path. May your children soon know complete good health.

asweet

Mon, Mar 16 2015, 12:42 pm

hi newbie!

I just wrote a real long post but unfortunately it got lost before I submitted it and I do not have time to rewrite it

just to say quickly ITS VERY HARD IN THE BEGINNING but it got much easier as time went on and now its ok

if ur interested pm me and I can give you tons of tips and tricks....

best bread out there and great flour replacement

the main thing to tell dd - that everything can be done in gf it just takes time to get it right

I bake everything from kokosh cake, rugelach, brownie bars all types of cakes cupcakes muffins, rolls, pita's etc...

not that you can't buy - but a lot of stuff doesn't taste great! our motto is WE TRY EVERYTHING ONCE in order not to get burned out of buying stuff and then throwing it out as the taste is not great

best bread is UDI'S - pasta to replace is not bad
bread crumbs no problem it doesn't taste any different
cereals I buy the generic ones that are gf: chex, fruity pebbles, cocoa pebbles, and then she has gf rice crispies, corn flakes

hot cereal there's a pretty good replacement too called rise and shine, made with rice and quinoa

the hard part is challa cuz nothing replaces the fluffiness of that - I do have a recipe if ur interested not great but ok - but dd also likes the "No way its gluten free" rolls I buy it by the Gluten free shopped in Brooklyn.

socially its hard- if they are having a pizza party in school I make sure to buy her from the pizza store gf pizza and deliver it myself.

but its still hard

pm or email me if any questions
good luck - remember its IS hard BUT DOABLE !

gfnotbychoice

Thu, Jan 07 2016, 10:39 pm

Hi everyone I'm new to imamother and I just found this old thread. What wonderful supportive posts. Wish I had seen these when we got the news. My son and I were both diagnosed with celiac in the past year. It can be so isolating and difficult but BH he has gotten much better and I'm slowly getting there... (I have DH). are there any other resources/posts on here you suggest? I'm new to the site so not sure how it works...

amother

Oak

Fri, Jan 08 2016, 5:14 am

Hi, you should know that nowadays there are so many GF products that you won't really miss that much food that contains gluten. The brand Gratify is great for pretzels and cookies, Bob's Red Mill 1 to 1 GF flour is really practical because then you can just use your old recipes and don't have to buy a bunch of different types of flour.
Milk n Honey restaurant has a gluten free pizza pie, and so on.