CELIAC DISEASE my dd just got diagnosed

amother

Tue, Jun 04 2013, 6:04 pm

my dd went for blood tests as she was falling off her curve on the grow charts - she's very short (although our families all have short kids and late bloomers)
yesterday I got the result that she has a thyroid deficiency
today the other part came back that she has "celiac disease"

I'm totally loosing it...anyone with experience with celiac?

what is the difference between celiac, colitis and crohn's?

we're waiting for our apt at the gastro and they'll do a biopsy to determine what she has, but would love to hear from other parents.

I'd appreciate any info ( what types of food is allowed, how do you manage the rest of family, is it possible as my kid has been feeling fine??)

anon for this

Tue, Jun 04 2013, 7:05 pm

My daughter has celiac disease. Like your child, she was screened for celiac because she was quite small for her age. We were surprised because she had no gastrointestinal symptoms. The diagnosis was confirmed by biopsy.

I don't know much about Crohn's or colitis, but I do know some facts about celiac disease. When someone has celiac disease, eating gluten triggers an immune response that damages the lining of the small intestine. (The biopsy looks for that damage). This means that the bod can't absorb important nutrients, which can cause gastrointestinal symptoms and/ or affect growth.

Many people prefer the term "gluten intolerance" because when the person follows a gluten-free diet, the intestinal damage is healed so malabsorption isn't a problem.

A gluten-free (GF) diet avoids wheat, rye, barley, and spelt, and derivatives of these products. Some gluten-intolerant people cannot eat oats either, but my daughter can. Because many gluten-free products are more expensive than their glutinous counterparts, and don't taste the same, the rest of our family generally eats regular food. So when I prepare pasta for dinner, I prepare a separate pot of GF pasta for my daughter, because the brown rice pasta my daughter likes is more expensive than regular pasta and my other children don't like it much. When it's easy to substitute, I do. Instead of flour, I thicken sauces with corn starch, and use oatmeal or potato flakes as a filler for meatballs or meatloaf (instead of bread crumbs or matza meal). I used to buy GF bread for my daughter, but now she prefers rice cakes or rice tortillas.

One note: Unless your kitchen is GF, spreads like peanut butter can easily become "contaminated" with regular bread crumbs.

If you have any other questions, you can ask them here or PM me.

amother

Tue, Jun 04 2013, 7:15 pm

thanks so much for your reply, as I just heard this today I'm very overwhelmed and in tears...

my daughter is only 9 - and is not so great socially I'm so nervous how to break it to her , we still have to go for more testing and the biopsy which will be so hard for her.

how did you daughter take it? is she ok with the rest of the family having regular food?

anon for this

Tue, Jun 04 2013, 8:26 pm

My daughter was diagnosed as a preschooler, over a decade ago; she's a teenager now. It was a difficult diagnosis for us as well. Until the endoscopy results came back I told myself she probably didn't have celiac anyway. I actually didn't start the GF until a few weeks after we got the results because it took that long to learn about the diet and make sure we had GF food on hand.

Shortly after we started her GF diet, she asked for wheat germ on her oatmeal, so I told her that the doctor said it wouldn't be healthy for her to eat it. She listened carefully, then said, "But I can have some next week, right?" I felt like crying when I explained to her that no, she wouldn't be able to eat wheat germ, but we'd find foods that would be healthy for her.

It helped me to think about all the differential diagnoses for poor growth that B"H my daughter didn't have, like cystic fibrosis and Turner syndrome. I thnk that now it's probably somewhat easier to find gluten-free foods, because there's more awareness of celiac disease and because many people without a formal diagnosis are avoiding gluten for various reasons.

In the early years, I tried to make sure that whenever I served a glutinous treat, I had a GF substitute that was just as attractive to her. So if my other kids wre eating cookies, I made sure that she had a GF cookie or another treat that she liked just as much. Another mother of a GF child told me that she always made sure that anytime her child smelled something good cooking or baking at home, that it was GF, but I couldn't always manage that.

For school treats and parties, I tried to find out the menu in advance and provide something that she liked. I kept some GF shelf-stable treats at her school or camp just in case. In the first couple of years, she sometimes felt badly about not being able to eat the same fods as everyone else, but now it's all she remembers.

Now that she's older, I still make sure that we have GF foods and treats that she likes, but I'm not as careful about making sure that she has a GF equivalent for every glutinous food we eat. Now she manages her food for herself for school events or when going out with frends. If we're attending a special event with a meal, like a simcha, I find out the menu in advance to ensure that she'll have enough to eat.

Since my daughter was so young when diagnosed, we didn't really explain the biopsy. I think we just explained that the endoscopy was a special sort of checkup that would look inside her body, but I can't remember for sure. It was a same-day procedure and she was mellow about it b"H. Obviously you can explain more to an older child.

amother

Tue, Jun 04 2013, 8:37 pm

This term "gluten intolerant" was used by my GI to describe people who react symptomatically to gluten, but are not technically celiac, as there is no evidence of internal damage from eating it . Someone who is gluten intolerant might suffer discomfort, but wont be doing themselves any real harm from ingesting small amounts. A celiac must be a lot stricter about keeping it out of the diet.

I'm sorry to hear about your daughter's diagnosis.
It does take some adjustment, but there is really a lot of stuff out there that can substitute the gluten.
It's good you found this out early - I'm 35 and was only just diagnosed!

Taliaville

Tue, Jun 04 2013, 8:41 pm

Amother, please PM me. I have been gluten free for 7 years, and can answer a lot of questions/offer suggestions. food brands, homemade flour mixes, what kitchen products you cant use for both gluten and not gluten, some good substitutes...

ddsw

Tue, Jun 04 2013, 8:58 pm

my dd was diagnosed with celiac earlier this year. it is definitely overwhelming but over time it becomes much easier. my dd is 4 and has taken it surprisingly well. there are foods that she was never interested in so it doesn't bother her when we eat it. she also knows that her stomach was hurting before and now on the gluten free diet she is not in pain. the endoscopy will most likely be harder for you than your dd- she gets to go to sleep, but is very hard for a mother to watch. please pm me with any questions. I too was freaking out when I found out since she is the first in our family to have celiac. there are tons of substitutes for the gluten food and there are even pizza stores and places to eat. it really can be manageable.

sarachana

Tue, Jun 04 2013, 9:27 pm

my first reaction to your title was, at least you HAVE diagnoses. now you KNOW exactly what to do....although it may take you some time to get used to it.

Sadly many go years and dont know what is making them so miserable. Your daughter is so lucky to have such a caring mom!

cbsmommy

Tue, Jun 04 2013, 9:45 pm

Anyone with a new (or hey, even an old -- just because you were diagnosed 10 years before doesn't mean you get any less excited when you meet someone new) Celiac Diagnosis, feel free to PM me. I'm not horribly active on this site at the moment, but I'm always happy to help in any way I can with everything from recipes, cleaning advice, brands to go for (brands to avoid), make-up, "da works".

Miri1

Tue, Jun 04 2013, 9:54 pm

My GI recommended meeting with a dietician who specializes in celiac.

flowerpower

Tue, Jun 04 2013, 9:58 pm

I am sure it is hard but over time you will get used to the gluten free adjustment and figure out what to use for cooking/baking and serving her. These days there is a much bigger awareness and there's much more on the market geared for the celiac community. The health food stores sell gluten free flour that is great for baking and there are a few recipe books that are only gluten free recipes. Brown rice noodles is great for the whole family. It can be used for any pasta dishes you used to make. They sell gluten free bread, baked goods, cereals.... Hopefully it won't be a very big adjustment. Lots of luck.

amother

Tue, Jun 04 2013, 10:05 pm

amother wrote:

I just had a biopsy done, and was diagnosed based on the findings.
The biopsy isn't really a big deal if you don't make it into one. They'll give her a drip, and they'll put something into her mouth right before she falls asleep. The whole thing lasts under ten minutes.
She may have a slightly scratchy throat for a day. That's really all it was for me.

It's important to make sure there are quick snacks available for her - that's my big challenge - getting used to finding other things to fill up on. The snacks are out there, but make sure you're well stocked, so she doesn't get the munchies without a quick fix available. (Crackers etc.)

cbsmommy

Tue, Jun 04 2013, 10:59 pm

Ok, I'm going to break this down.

amother wrote:

my dd went for blood tests as she was falling off her curve on the grow charts - she's very short (although our families all have short kids and late bloomers)

That's a very typical pattern for diagnosis. I happen to like the book Wheat Free Worry Free http://www.amazon.com/Wheat-Fr.....+korn - Danna does an amazing job of breaking down some of the more common symptoms. Celiac Disease symptoms are literally a three page laundry list including everything from diabetes to joint pain, to anemia, short stature, weight loss, and even obesity. Some people experience "stomach pain" and others NEVER will.

amother wrote:

yesterday I got the result that she has a thyroid deficiency

It's REALLY common for autoimmune diseases to travel in packs. A thyroid deficiency is sometimes an autoimmune disorder, and Celiac Disease is an autoimmune disorder. Alternatively, you might not be dealing with two separate diseases, the thyroid issues might actually be stemming from the Celiac Disease. Time, a gluten free diet, and a good endocrinologist will tell

amother wrote:

today the other part came back that she has "celiac disease"

I'm totally loosing it...anyone with experience with celiac?

Loads of experience. I have it. DD has it. There are 1 in 100 people in the United States with Celiac Disease. I PROMISE you are not alone. If you feel alone, feel free to PM. I'm not sure where you are located, but there are some AMAZING support groups for dealing with Celiac Disease.

Honestly, when my doctor told me I had Celiac Disease, I thought that the world had pretty much ended. In typical teenage dramatic fashion I declared that "My life was over" and pitched a fit that would have rivaled a rockstar. In hindsight, my life didn't end, I became healthy and I feel better than I ever did before.

There is a learning curve, but this is a VERY "doable" diagnosis (even though right now you want to sit down and cry.)

amother wrote:

what is the difference between celiac, colitis and crohn's?

All three are autoimmune diseases that affect the gastrointestinal (GI) tract. That means that there is a "trigger" that causes the body to mistake it's own proteins and cells for harmful bacteria and go on a "damaging rampage of mass destruction". Colitis "damage" occurs in the large intestine, Celiac Disease damage occurs in the small intestine, and Crohn's disease flares can occur at any point in the GI tract (so from the mouth to the backside).

However, unlike colitis and crohn's the mechanism triggering the immune response in celiac disease IS known. The villi of Celiac Disease sufferers are flattened in a immune response in the presence of gluten. So while colitis and crohn's sufferer's take lots of medicine in the hopes of "calming" their immune responses, the person with Celiac Disease need only scrupulously avoid gluten in order to prevent damage.

amother wrote:

we're waiting for our apt at the gastro and they'll do a biopsy to determine what she has, but would love to hear from other parents.

I'd appreciate any info ( what types of food is allowed, how do you manage the rest of family, is it possible as my kid has been feeling fine??)

Alright this last bit is loaded. It could be a 15 chapter book in and of itself, but my pizza (yep, gluten free) is going to be ready in a few minutes and so I'm going to end this post shortly. People with Celiac Disase cannot eat gluten. Gluten is found in wheat, spelt, rye, barley, and MOST commercial oats. Your daughter cannot eat anything that has touched or been cooked with something that contains these items.

EVERYTHING (and yes, I mean everything) can be made using gluten free flours.

But, baking without gluten is completely different than baking with gluten. There is a lot of trial and error. I think I made 6,000 doorstops before I finally learned how to churn out a decent gluten free bread. Nowadays, gluten free baking is also MUCH MUCH easier. I used to have to drive out to a specialty store to buy rice flour. Now I can have my husband stop at Target (I literally cried the first time I saw kosher, gluten free animal crackers at Target), although I prefer to buy in bulk from Amazon. I have a whole slew of recipes, and they do not. taste. like. Pesach.

(Side note: You know how sometimes the best compliment that Pesach food can get is that "well, it doesn't taste like Pesach"? There is a similar concept in gluten free cooking where the thought it "tastes gluten free". The reason being that there are some foods (usually packaged brands) that taste very very gluten free -- aka they crumble, are heavy, tasteless, and gummy all at the same time.)

BUT...done correctly, gluten free baked goods honestly don't taste gluten free. And you need not take my word on it (after all, I haven't had wheat in a while, so maybe my judgement is suspect). My sister -- who is not on a mandated gluten free diet -- will only bake gluten free banana muffins. She won't bake wheat ones anymore because she thought that the gf recipe tastes better. My 16 year old babysitter cheers whenever she sees the chocolate chip cookies in my freezer last week. She didn't realize that they were gluten free until I told her. Whenever my daughter has friends over, I feed the whole kit and caboodle of them gluten free snacks. At my BIL's birthday, we served a giant gluten free chocolate cake. Twenty people were astounded that it was gluten free.

And in case you couldn't tell from my post, my "the rest of the family" eats gluten free in the house, and whatever floats their boat out of the house. I felt that it wasn't fair to me to:
1) constantly have to clean and decontaminate from gluten in my own home
2) watch other people eat foods that I can't eat in my own home
3) have my child watch other people eat food that she can't eat in her own home
4) make two separate meals all of the time

And with regard to your final comment, it's very possible that your child has been feeling "fine", but I would put the "fine" in quotations. You talk about the fact that she is short (enough so that it did worry your pediatrician) and that bloodwork shows that she has a thyroid hormone issue.

This means that she IS showing symptoms for Celiac Disease.

rainbow dash

Wed, Jun 05 2013, 3:04 am

Here are some websites to help you get started. Also I know its overwhelming but bh nowadays there is a lot of food you can get in stores. When I found out I had it I went to a dietitian . Where I live (Belgium) I can get 500 eu a year from the health insurance for help buying food. Good Luck.

http://www.celiac.org/
http://www.celiac.com/
http://www.celiaccentral.org/c.....9361/

cbsmommy

Wed, Jun 05 2013, 5:30 pm

rainbow dash wrote:

In the US there is a reimbursement "program" for Celiac Disease, but it's complicated, (and with the new laws going into effect soon, who knows where that program will go.)

Currently if you save all of your receipts and can show the cost difference between the gluten free bread and the regular bread, you can receive a tax deduction on the $2 difference.

But this entails more paperwork then even I can handle, and so I've never done it.

Regarding nutritionists and dieticians...I saw one when I was diagnosed. She handed me three xeroxed pages entailing three columns worth of the following lists: "foods that never contain gluten," "foods that might contain gluten", and "foods that always contain gluten." You'll be happy to know that mayo, mustard, and ketchup went in EVERY COLUMN, as did the words "rice cake", "bread" and "traditional cookies". I should see if my mother ever kept that paper. I could use a good laugh.

The woman had no idea what the gluten free diet really was.

A few years ago I saw nutritionist #2 ...she knew what the gluten free diet was! But...she lost points when she handed me recipes for gluten free items that were soooo horrible and dense that everything I baked needed to be processed for bread crumbs. She knew the "science" of celiac disease and was able to tell me that I should eat gluten free toast at breakfast, but she couldn't help me make that gluten free bread (it was sad I tell you, sad.) I personally needed someone to help me make decent food for my family. Since she'd never really baked a gluten free chocolate chip cookie in her life, she couldn't tell me why my first five batches disintegrated into crumbs.

So, I personally started attending gluten free expos and looking at Celiac Disease from the cooking aspect.

I found it much easier to deal with the fact that I have Celiac Disease while eating a lovely piece of gluten free carrot kugel, rather than while watching everyone else eat carrot kugel.

I strongly recommend Living Without Magazines. The articles have lots of tips and tricks for cooking without gluten.

I also like: glutenfreemommy.com for her bread and cake recipes.

I know some people like Bette Hagman, and her stuff is ok, but beans bother me and her recipes reflect her love affair with all things garbanzo.

I like many of Analise Roberts' recipes, and the gluten free bible:
http://www.amazon.com/Gluten-F.....nster - I checked this out of the library multiple times.

http://www.amazon.com/Gluten-F.....bible - it's often on the clearance rack at Barnes and Nobles. The pizza recipe in here is FANTABULOUS.

Barbara

Wed, Jun 05 2013, 5:44 pm

You can look into your local chapter of Raising Our Celiac Kids (ROCK) http://www.celiac.com/articles......html
for ideas as well.

amother

Wed, Jun 05 2013, 9:08 pm

thanks everyone your replies are really helpful, as I feel I'm not so alone. so far I'm still trying to come to terms with this.. my family is the real starchy type - my kid loves sandwidches, challis and kokosh cake galore - how in the world will she manage? what am I doing with the rest of the kids??? I'm also due in about 2 months right before yt" and I can't imagine how I'm going to do this...

how does it work you turn over to a gf kitchen within a week? month? or months?

we have an apt at a gastro on Friday so will see if we'll get any more info. - we probably have to get the biopsy done first to confirm...then if ( hashem should help and it should turn out to be nothing...) I'll use all your links and pm all the wonderful imamothers with all my questions.

again, thanks so much.

cbsmommy

Wed, Jun 05 2013, 11:27 pm

amother wrote:

thanks everyone your replies are really helpful, as I feel I'm not so alone. so far I'm still trying to come to terms with this..

That's normal. You and your daughter will likely need time to come to terms with it. Every once and awhile I become exasperated with my diagnosis...but I promise, there are loads of other people that have BTDT. We're only a log on or a PM away!

amother wrote:

my family is the real starchy type - my kid loves sandwidches, challis and kokosh cake galore - how in the world will she manage? what am I doing with the rest of the kids???

I'll be honest: this is a mentality. If you look at this diagnosis as being the end of "being normal" it'll be harder. Until the official biopsy, it is actually VITAL that your daughter continue to eat gluten every single day. I would STRONGLY advise this. The reason is that the biopsy will appear normal if your daughter stops eating gluten...and that could give you a false negative. You don't want unreliable test results. You want a clear cut diagnosis -- and so you have a little bit of time before the cleaning and changing starts.

Starting now and until her official "rest of your life" diet start diet you'll want to start reading up on Celiac Disease. How will your daughter manage? Honestly, you won't know until you start. It's very likely, she'll have a rough few months, and you'll have a rough few months by extension. Alternatively, she could have an easy transition and you'll still have a rough few months as you panic every single time you watch her eat something. I still remember going to stay at my cousin's house for Shabbos, and in the morning she told me"B"H. I was so nervous tht if I messed up the food I'd kill you." While that fear is pretty irrational (gluten will not make me drop dead in the immediate future) it reflected her panic regarding the idea of gluten free. Celiac Disease typically means mommy has a whole new thing to worry about. It'll also means little-no takeout, very little eating at other people's homes, and learning how to center life around something other than food.

That last one can be very difficult for some people.

amother wrote:

I'm also due in about 2 months right before yt" and I can't imagine how I'm going to do this...

You CAN do this.
You will do this one step at a time.

1) Log off the internet and read a Danna Korn R.O.C.K book (Raising Our Celiac Kids). Make notes for yourself, take a day to absorb the information, and start to create a foundation on what Celiac Disease is. I really love Danna's explanations regarding the different people that you meet. She divides the world at large into categories: the people who will be petrified to give your kid a glass of water, the people who will happily serve your child the food you make and offer to host repeatedly, but they can't cook for your kid, the people who successfully can cook gluten free for you (these people are the gems of your life - most people never get near this category. This is your best friend/close aunt/sister that says: "I care about you, and if this is super important to you, I'll make it super important to me." Then there are the people that just. don't. get. it. (These people can be your mom, grandmother, sister, brother, child's teacher.) These people will hand your child a wheat cookie and say "but it's Chanie's birthday?! What could one piece hurt?" These people will hurt your soul when you question why they don't understand Celiac Disease. Just remember, EVERYONE has someone in this category.
2) You are going to get cleaning help. Hire someone to help you clean your dishes/cabinets/fridge/freezer.
3) Send DH to the store for the new gf toaster, gf pasta pot, strainer, assorted knives (breadknife primarily), and small hand mixer -- He also will need to buy a big package of Sharpee markers (in at least 2 colors)
4) Hire a teenager to take said new gf items to the to the keilim mikvah.
5) Enlist DH's help and together label EVERYTHING in your fridge, pantry, and freezer. From now on, in addition to being milchig, fleishig, or pareve, it's also GF or HAS GLUTEN (choose to spell out one of the words. That way, if the sharpee starts rubbing off, you don't have an "oops" moment where someone grabs the wrong jelly jar. (Why do I advise that you and DH do this together? Because he is her father. And this is not one of those times where it's ok if mommy knows what's safe, but totty doesn't have a clue. Both parents need to be on the same page with Celiac Disease.)
6) You and DH together do the first few food shopping trips, together, and without any of the kids. I personally had an excellent experience where my good friend and I walked into a Whole Foods in my area (ok, she dragged me, I was convinced my life was over and hiding in a whole). She walked up to the customer service department jerked her thumb at me and said to the employee: "My friend was diagnosed with Celiac Disease yesterday. What can she eat?"

I can't speak for all Whole Foods, but 2 employees lead us on a guided tour of the store. They opened packages and (for free) had us taste a variety of products. (side note: I went to a different WF store last year when my daughter was diagnosed with a dairy allergy. I asked them what products they recommended and I left having a much better grasp of the products on the market, how different things tasted, and where I could find the items.) While WF can be a pricier place to shop if you just buy everything you see (they did earn the moniker, Whole Paycheck after all), the employees are really knowledgeable. They're not always perfect, but they will be someone standing there "live" to help answer questions.

amother wrote:

how does it work you turn over to a gf kitchen within a week? month? or months?

You're going to do it in a few days. Just like for Pesach...but it'll take you a solid 6 months to fully get the hang of reading labels, cooking gf, labelling, cleaning, etc. Unfortunately, there is frequently no learning curve for slowly easing yourself into this. You're just going to have to jump in and do it.

amother wrote:

we have an apt at a gastro on Friday so will see if we'll get any more info. - we probably have to get the biopsy done first to confirm...then if ( hashem should help and it should turn out to be nothing...) I'll use all your links and pm all the wonderful imamothers with all my questions.

again, thanks so much.

We're here if you need!

amother

Thu, Jun 06 2013, 9:53 pm

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.

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"

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.....

anyway thanks for your replies.

amother

Thu, Jun 06 2013, 9:53 pm