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 Celiac Disease

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Iluvmyhuskies
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Location : Northern Nevada

PostSubject: Celiac Disease   Fri Jan 24, 2014 4:04 pm

Sorry guys, but this is so totally off topic of anything husky. I was just wondering if you or you know of anyone living with Celiac Disease? What are your experiences with the gluten-free diet?

I'm curious to know because my 6 year old daughter was tested positive for this through blood work. She is also scheduled to do a biopsy of her small intestine next Tuesday. This is all new to me, and I'm so scared to what this is, and how it will change her life. I've done crazy research, but I just feel like I'm alone because I know of no one who has it.

It also sucks she has it, because as you know kids like eating everything, and she can now no longer eat any of her favorite (junk) foods. How do you tell a 6 year old she can't have cake at birthdays, pizza for her classroom parties, candy at the movies?  Sad
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siku&nikolai
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 4:15 pm

I'm sorry Kristin, thats really awful and I'm sure its going to be very hard to adjust. My grandmother has celiac disease that she developed later in life, and we often think that I am going to follow in her footsteps because I have problems with some foods. I have for now though, tested negative for the disease and I get retested probably every two years.

There are a lot of great cookbooks out there that I have seen, and you might want to look at the paleo thread that we have on this forum for some recipes and resources. You do not eat any refined or processed food on that diet and that should help you as far as fun recipes, although i'm not sure if every single one will work.  

I will say though, with the way things are moving, so many places have great gluten free options at restaurants and you can find so much more than you use to be able to. When I use to go grocery shopping with my mom for my grandmother we couldn't find much that she was able to eat, but now stores have full aisles. I feel so bad for your daughter as it doesn't seem like a good thing to have, especially at that age, at least there are now a lot more resources that you can make her eating habits a lot more exciting for her so she doesn't feel as though as she is missing out.

Good luck with everything, its definitely going to change her life as well as your whole family.


Last edited by siku&nikolai on Fri Jan 24, 2014 4:18 pm; edited 2 times in total
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eander83
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Location : Northern Virgina

PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 4:16 pm

First I'm sorry this happened to your little girl. I don't have much to offer but this is my experience. Kevin has Celiac Disease but refuses to go on a Gluten free diet (doesn't help he has GERD). Well he tried for 2 days then quit. Most nights he is up with painful gas, burping constantly. Considering she is young it should be (but probably won't be) easier to incorporate a gluten free diet vs doing it in a 31 year old man. He is set in his ways. I hope this help a little.

Some links I found helpful:
http://www.mayoclinic.org/gluten-free-diet/ART-20048530 _ showed this List to Kevin as he was I can't live without beer.
Celiac Disease Foundation - www.celiac.org
Gluten Intolerance Group - www.gluten.net
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simplify
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Location : Louisiana

PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 4:25 pm

One of my husbands very good friend's wife has celiac disease. For her it's not just a gluten intolerance, but she also is allergic to wheat.

She still eats a ton of things but there are food prep precautions and the normal junk things you tend to have to stay away from but there are still a lot of things she'll still be able to eat. Once you find out more about exactly what her intolerances are you'll be better of figuring out how to change her diet.

You do still have to be careful with gluten free things as the FDA still regulates things that have a very small percentage of gluten in them as being "gluten-free". You just have to police all your foods. Vegetables, meats, etc. are all still good and rice is always good alternative to gluten free instead of bread. They do make gluten free breads. Depending on your area, finding some of these foods may be harder.

There are tons of articles and lots of literature on celiac and gluten free diets out there that will be a big help.

I'm sorry this is happening to your daughter though. She'll soon forget what "real" cake and cookies and the like taste like.

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Iluvmyhuskies
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Location : Northern Nevada

PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 4:54 pm

Thank you, thank you all!

Erica from Maine-yeah I'm very happy to see that there is restaurants that offer a Gluten-free menu, and that there is supermarkets that carry Gluten-free products. I'm just gonna have to read lables, and adjust to a new healthier lifestyle...which doesn't sound all that bad!! lol

Erica from North Virginia-The whole burping thing with Kevin...makes me wonder if my boyfriend has GERD or CD, only because he does the exact thing. Also, I read it runs in the family. Neither of us have been tested so we don't know if we have it. Yes it does help and thank you for the links.

Ashleigh-It's going to take some time to get used to figuring out what she can and can't have. I also read that there is also cross contamination of gluten that I will have to monitor as well. It just saddens me that this is happening to her so young, and it's nothing she can ever grow out of.

I do want to thank you all again for your helpful info. It does make me feel better knowing there is helpful sources out there!
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simplify
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 4:59 pm

At least she can still have potato chips! The Baked Lays Original are gluten free. Very Happy

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Iluvmyhuskies
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 5:03 pm

simplify wrote:
At least she can still have potato chips! The Baked Lays Original are gluten free. Very Happy


I saw that.  Very Happy  We had just went to Costco last week and bought the case of Baked chips,  ironically this was before we found this out. I think the only chips out of that case that she can't have are the Baked Ruffles sour cream and cheddar...which ironically again is her favorite kind.  Sad
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wpskier222
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Location : NYC

PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 5:31 pm

My old boss had twin daughters were celiac and were around the same age as your daughter. I think they were diagnosed around the age of 4. They actually did pretty well with it. Their mom taught them how to read and look at labels, and what to look for. She told them to make sure if they had a question to call her. I was with them once when they had to call, it was adorable!

The family was able to make adjustments to normal recipes so the kids could have stuff. For example when they made meatballs, they used potato instead of bread crumbs. I think as long as her school, friends parents, and teacher know you can avoid a lot of those situations where she might feel left out. And in the situations where she isn't sure just make sure you have her call you.
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GeorginaMay
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 5:32 pm

I work with two ladies who are both Celiac and they both have children who are too. One of the kids was not diagnosed until he was three so there was a bit of a transition and explanation period but he caught on very quickly that certain foods hurt his tummy and he didn't want to eat things he wasn't supposed to. My mum has it also and honestly as an adult she had a harder time changing to gluten free than the child. If you explain it all to your daughter I'm sure she'll catch on pretty quick and it will just become the norm for you Smile
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Kobey&Lola
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 5:36 pm

I haven't posted in so long but am on here all the time. Saw your post and had to respond.
My mom has had Celiac since she was a kid. She always had severe stomach aches all the time. At that time, it wasn't as known and the doctors had no idea what was wrong. She dealt with the symptoms and even had her gallbladder taken out. She finally figured out for herself that she probably had it and got tested. She has been GF for about 15 years. It does run in families. You and your husband should get checked just in case. Even though you may not have symptoms, if you do have it, gluten can cause much damage to your small intestine. I have been tested many times and found that I don't yet have it but I do have the gene for it, so I will most likely have it at some point in my life.
Because it's much more known now, there are so many more options. I don't know what restaurants you have in your area but applebees, outback steakhouse, red robin, carabas, olive garden, (beware of dominos- they say they are GF but it is NOT safe for celiac) are a few that have GF menus. Be very careful about going anywhere that isn't GF. Cross contamination is definitely a worry. My mom has her own butter, peanut butter, etc. containers because even crumbs will make her sick. There is a free app called "find me GF" where you can find close restaurants, scan barcodes of food to figure out if it contains gluten. There are many things that are actually naturally gluten free. Many types of chips (cape cod, lays, baked cheese doritos, ranch doritos, tortilla, cheese puffs-to name a few), you mentioned candy- many types are actually gluten free- snickers, recee peanut butter cups, m&ms, tootsie rolls. Bisquick has an awesome mix for making biscuits- they really don't even taste GF! Betty Crocker makes a great cake and brownie mix.
It will sure be an adjustment but it's great that they discovered it while she's very young. Any questions, feel free to ask. Everything that my family makes for parties is gluten free- so lots of experience here!
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Iluvmyhuskies
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PostSubject: Re: Celiac Disease   Fri Jan 24, 2014 5:58 pm

Jen-wow that is such a good idea! Having them read and know what to look for on lables. And to call if she isn't sure! See, why didn't I think of that!!! Like I said I don't know much about any of this. Thank you!!!

Olivia-it's just so weird to me that it comes up all of a sudden. Like one daughter had it before the other.  confused  My son, who is 13 shows no signs of it, but because he is an immediate family member he is likely to get it too, therefore I 'm having him undergo a blood test too!

Jess-It was just abnormal for her to say she had stomach pain almost every day. I took her in to see her Pediatrician because she was throwing up almost every morning 5 days straight for no reason. It was around 2 or 3 am. Then after she would complain of stomach pain, and have diarrhea all day. I just knew something wasn't right, and for this to happen all of a sudden was just weird. I was thinking to get tested myself, and my boyfriend. If it turns out that one of us has it too, I'm just going to switch up the whole family diet. In the meantime she will have her own marked food in the house. Oh, and thank you for the app!!! That will really help out!!
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eddycaaa
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Location : Chicago

PostSubject: Re: Celiac Disease   Sat Jan 25, 2014 1:26 am

Sorry you are going through this! I'm on a gluten-free diet, because of gluten intolerance (not celiac) Its not so bad once she gets used to it. I'm all about finding suitable replacements of gluten containing foods, especially in the beginning of making this change. There are plenty of replacements for "junk" food. My favorite treats are Larabars, primal palate's chocolate chip cookies made with blanched almond meal, classic macaroons... I'll try to dig up more when I'm not super tired. Tropical traditions has a ton of yummy gluten free recipes.
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http://www.ericalynnrodriguez.net
Iluvmyhuskies
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PostSubject: Re: Celiac Disease   Tue Jan 28, 2014 12:34 pm

Thank you Erica!

Today is the day my daughter goes in for her biopsy. I'm a little nervous, and I just want it to be over already!
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amymeme
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PostSubject: Re: Celiac Disease   Tue Jan 28, 2014 2:00 pm

I went through all this testing this past summer - anticipation is worse than the procedure. They give you very nice, short-acting drugs so you don't give a hoot, the procedure is quick, they did quite a few biopsies on me (I had both upper endoscopy and colonoscopy at the same time) and I bounced right back. No bleeding, hungry as a horse. Even the anticipated sore throat did not occur (and I am not a spring chicken - your daughter's youth is on her side.)

I am non-celiac gluten sensitive, the diet is the same. (Though the consequences of accidental ingestion are not as severe) Not so bad - We have a Wegman's gluten free baking mix that makes pancakes so good that husband can't tell them apart. I've used it to make Honey Cake that was delicious and I made crepes that were better than made with regular flour. Schar makes a multi-grain roll that is really good (pricey and the roll is small but better than nothing).

Glutino makes a gluten free table cracker, 7 oz pack about 2 x 3 x 4 package, is really good. I buy them at Walmart, use it for cheese and crackers, peanut butter (rice cakes and peanut butter have become a staple!) Most potato chips are ok (some bbq not).

I'm about to try my favorite chocolate cake recipe with the Wegman's mix - generally, any recipe that has lots of moisture and oil or fruit puree works well with gluten free baking. You just have to let the batters sit and hydrate for 10-15 minutes. If the cake turns out well, I'll send you the recipe.

For sandwiches, I use Udi's gluten free soft and hearty multi-grain loaf - again, in the freezer next to the bakery counter at walmart. It's best kept in the freezer, take out the slices you need, make the sandwich frozen, then put in a baggy to thaw - the baggies keeps the moisture in the bread. At least after skiing, the sandwich tastes pretty good (I'm difficult in that regard - up until this summer, I made all my breads from scratch so my standard is a little up there.)

I hope all comes out well and that she has no intestinal damage (it will heal, if she does.)
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Iluvmyhuskies
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PostSubject: Re: Celiac Disease   Wed Jan 29, 2014 4:28 pm

Wow, thanks so much much Ami!! I would much appreciate the recipe for cake, and so would my daughter!!  Smile  Just like you had mentioned it's the anticipation that's worse then the actual procedure.

Just an update: Yesterday was the procedure and just like many of you had stated it was a very quick and easy procedure overall about 10 minutes. My daughter did great. She took it all like a champ. She is fine today, no complaints of sore throat or any other complications.

The dr. did tell us, and show us that she does have inflammation of her Duodenum, and that there is in fact scalloping of the the folds. Which is more then likely Celiac. We are awaiting Biopsy results that will tell us for sure if it is or not. Overall, the severity is mild. Hopefully we get results soon, so that I can start her on a gluten-free diet since we were able to detect it early.
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