Celiacs Disease

kellylynnshonting

I am posting this for my niece who will be going in one day this week for food sensitivity testing. One of the things that she'll be tested for is Celiacs Disease.

Of course, it's not something that I want her to have, but I realize that it won't be the end of the world if she does...it's just that she is only 6.

I was hoping to chat with anyone who may have Celiacs. How have you adjusted to it? What has been the biggest change you've had to make? What's been your biggest struggle? Are there any tips or tricks for how to deal with something like this?

Any advice or information would be fantastic and greatly appreciated.

sollyn23l2

The good news is that kids generally adjust to it pretty quickly. Especially when they realize that eating doesn't hurt anymore. The challenge is that, yes, there will be times she will feel left out. Nature of the beast. But it's worth it. Celiac disease can quite literally kill you if you continue to eat gluten.

fitoverfortymom

My daughter has it. I agree that the period of adjustment is relatively easy once everything you eat stops making you feel like crappola.

The trick with Celiac is avoiding cross contamination, so being prepared to make sure not one crumb touches her food is the hardest part. We decided to keep out house completely free of gluten so she would have a safe place where she could eat freely. It's too risky trying to manage gluten and non gluten in the same kitchen.

We avoided glute free substitute products like bread and pasta for a while because they taste funny at first. The GF products are so much better now than they were 10 years ago.

nvmomketo

I have it and I suspect two of my kids may have it too. They were tested but celiac tests muss up to 75% of all adults - it is even higher among kids - so I did not trust their negative test results. They are healthier GF.

I adjusted fine. I had about a week where I had some withdrawal (horrible migraine, fatigue and crankiness, along with a flare-up of the autoimmune arthritis it caused) but then I started feeling better.... First the stomach aches after eating went away. No pain from eating was a revelation. Eventually my hair loss slowed, I got more energy, fewer migraines, and my arthritis improved. It took close to a year for my symptoms to all start improving. When someone goes GF, they don't stop making autoantibodies immediately. It can take some months for the body to stop attacking itself. Be patient.

The biggest adjustment for me was eating out. We don't do it anymore. No more fast food or picking up pizza on the way home. Even if I ordered GF, I still was glutened about a third of the time. Eating out is not worth a 30% chance of pain and illness for days or weeks.

i now bring food if we are out of the house. If we travel, including to people's homes, I bring butter, toaster bags, jam, peanut butter and condiments we might need. Other people's food will be contaminated, and crumb is all that is needed to cause illness. I only stay at places where we have a kitchen too. I have to cook. No more continental breakfasts at hotels unless the kids are happy with just eggs and maybe bacon... Even then, be careful.

My son has a birthday party he is going to next week. I will bring food for him, and to share so it is not isolating. I'll bring his own pizza (a "GF pizza" from a normal pizzeria can not be trusted as safe for celiacs), a bag of chips, some GF cupcakes or brownies depending on what the host wishes, and I will have a few GF candies at home for him to trade out in case he gets a candy loot bag. GF is just extra work for mom.

I highly recommend celiac.com forums. Great people there. Look for resources. My city even has a GF summer camp near by for one week, otherwise it would be very tough for my kids to attend camp.

I would also advise to get all celiac tests done. If one test is a false negative (common) another test may catch it. She'll want tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and AGA IgA and AGA IgG if she can't get the DGP tests done. Get both IgA and IgG tests done even if IgA is not lie ( a common cause of false negatives). She needs to eat 1-2 slices of bread, or equivalent, in the 8-12 weeks prior to testing.

Best wishes to her.

shaumom

I have three generations of celiacs in my family now. Both myself and my daughter have it, so I'm gonna have a long one here.

Adjustment-wise...it's quite difficult at first, I won't lie. But after a while, it becomes pretty old hat. The biggest change, honestly, is how it impacts a couple things.


1. Socializing - you don't realize how MUCH of our social activities revolve around food. Popcorn at the movies, going out for donuts, turkey and stuffing at Thanksgiving, Candy at Halloween - all of this will be different for a celiac. Popcorn at a movie is a big cross-contamination risk, donuts are no-go, food at Thanksgiving or other holidays may not be possible or have to be substituted, candy at Halloween has to be vetted and checked to make sure it's gluten free.

ANYTHING to do with food can no long be, well, spontaneous or easy, frankly. If she goes to visit a friend's, you can't count on their having anything safe for you child and will have to pack a lunch. if she wants to go out suddenly, parents have to have pre-made snacks already made to take with her. Eating out at most restaurants is a complete no-go (most restaurants that serve gluten free food do NOT actually have food safe enough for a celiac, and so can make her quite sick), so again, making food for her to take is going to be a thing.

This is a big change, and challenging, but at the same time...you get used to it. It becomes common place to plan ahead of time for food to take with you, for what to take for the little one to eat at a birthday party, for what to make for the holidays, and you start to memorize what brands and products are safe and what aren't.

2. The family behavior and food - for a little one this age, there is a part of this that I have, honesty, never heard the doctor or nutritionist mention, but that every family I know of has run across, and it's this: she's still young enough that she's NOT going to be able to be careful enough to keep herself safe without help.

The problem with celiac disease - think of it like peanut allergy level sensitivity, but narrowed down so it only applies to things that go into the mouth. But kids this age still lick their fingers without thinking about it, put a thumb in the mouth sometimes, touch things without thinking, are not perfect in their hygiene while making food or touching it.

And as a celiac, you REALLY need to be aware of these things or you can get sick. My daughter was having the worst time in the beginning, where she would ALWAYS get sick at a friends house, every single time. So sick we'd have to come get her and she'd be doubled over in pain.

We gave her her own food, and then started using only her utensils and a special plate (because residue CAN remain on dishes, if not scrubbed properly - heat doesn't kill the proteins, only scrubbing them off or washing of with soap and water if not baked on). And she was still sick. Know what we figured out finally? The chair backs were the cause. People in the house would do things like make a sandwich or whatever, and then grab the back of the chair and pull it out to sit down, without washing their hands in between. And it wasn't an area that would get washed all that often.

My daughter would put her food down, wash her hands carefully...and then pull out the chair with her hand in the same place, get her hands contaminated with gluten that way, and then touch her food and it would get in her mouth and make her sick. When she finally stopped touching ANYTHING after she washed her hands - nothing other than her food, her plate, and her cup and utensils? She finally stopped getting sick.he bui

My daughter Is a little more sensitive than some (some celiacs are not quite so sensitive, some are more), but as a result, the whole family went gluten free because we couldn't keep things safe enough - especially with other kids involved - for her not to keep getting sick.

So having the whole family gluten free may be a real consideration. And also, if she is positive - the entire family should be tested for this. Experts recommend an entire family of a celiac should be tested very 2-5 years, because the disease can trigger at any time, and can do damage for years before symptoms show. And also, the risk factor is 4-5 times more that you will get it if it's already in your genes in the family. (which means people need to get tested BEFORE they, themselves, go gluten free, as the test itself only works to look for biomarkers of a reaction TO gluten. You go gluten free, you test neg. for celiac disease).


Struggle -

Changing diets. I'm gonna pass on an analogy of the two choices for this. Let's say you have lived in the desert all your life (the land of gluten, as it were), and you build your flat roofed house (recipes) out of adobe bricks (gluten). Adobe is all around you, and it is a good building material for where you are, and the flat roof is a good style for the building materials you have, and the place you live.

...and now, the family moves to the arctic. There are two choices here. One, a person can try to recreate everything they had in the desert land of gluten - try to mimic the look and feel and texture of adobe bricks, and the shape of the houses. Or you can learn about the materials you now have (anything without gluten), and what is the best style of house to build with THOSE, and build that instead.


The former is, essentially, trying to have the same diet with the same recipes, just with gluten free substitutions for things like bread or pasta. The latter is NOT trying to recreate the old diet, and making a new diet based on different ingredients as the main ones, and a completely different way of eating.

The former is a LOT of money - trying to eat the same meals but with gluten free options is typically 3-4 times the money as gluten filled options. It is ALSO not so great on the nutrient front, because a lot of gluten free foods are primarily aimed at mimicking taste/texture/look of gluten foods, but NOT the nutrients of them.

The latter takes longer to figure out. It has more whining, because the new foods may taste odd, or it takes a while to cook well with them. But it tends to be tremendously cheaper, and often nutrition is a bit easier to get. And in the latter, people I know who do it often have gluten free substitutes as more of a treat, a nostalgic meal here and there, you know?



So, tips or tricks
1. If possible, best thing I saw to help make the gluten free change go well, IF it could happen over time, was to start making new gluten free recipes or products BEFORE you drop the old ones. And then each recipe or product that is liked, keep that and use it instead of an old, gluten recipe. That way, it's not a transition from old, loved recipes to brand new ones that may not be so great, all at once. Seems to be easier, but if there is a lot of pain from gluten, then it's not always possible to do this slowly.

2. Bento lunches. They are cute, fun, creative, and they are neat enough that they can often eliminate any stigma of being 'different' for one's lunch, because they are different by being 'cool' instead of weird. :-) And they also serve as both lunchbox AND plate, which helps cut down on cross-contamination risks. AND with the recipes often having an asian flair, the recipes are often gluten free, as long as you use gluten free soy sauce (which is actually traditionally made soy sauce, before wheat was used as a filler).

While some of these are small and not elaborate, they can become REALLY creative and awesome, too. Here's some explanation of what they are, and some links to some people's really creative versions, too. The first link has links to where one can buy the lunch boxes or things to go with them.

basics - h[url="ttp://justbento.com/handbook/bento-basics"]ttp://justbento.com/handbook/bento-basics[/url]
some more basic bentos -
http://www.justonecookbook.com/15-easy-bento-ideas-recipes/
http://greatist.com/health/healthy-bento-box-ideas

Super creative bentos that are fun for kids -
(it's a pinterest one, but you can find more images elsewhere - https://www.pinterest.com/janleiner/fancy-bento/ )


3. Check out cecelia's marketplace - it has a basic gluten free grocery guide book, listing common products that are gluten free (like which cheeses, catsup, etc...). Can be helpful at first.

nvmomketo

Wow! Great post @shaumom

holly_9580

My husband was just diagnosed with celiac disease a few months ago. The first few weeks were basically a vertical learning curve, but overall the adjustment hasn't been as hard as I feared. And it's made such a difference in his health already that any hassle/inconvenience has been 110% worth it.

Like others have noted, one of the biggest adjustments is that you lose a lot of spontanaeity: for example, hubby says the hardest thing for him is he can't just run to the store bakery to get a treat when he gets a craving. And anytime we eat away from home, it takes extra planning and consideration. . .but it's not terrible. You get used to always bringing multiple dishes to potlucks/holidays, planning ahead, finding workarounds, keeping certain things on hand, cooking extra so there are leftovers for lunches/snacks, etc. It just becomes your new normal, and honestly it's happened faster than I thought it would.

Another difficult thing has been the trendiness of eating gluten-free, which sometimes makes others believe that anyone who's eating gluten-free is just following a fad diet and is being difficult/inconsiderate when their restrictions impinge on others. And there are so many "mostly gluten free" individuals these days that they're unconsciously training others to believe that "mostly gluten free" is good enough for anyone who says they can't have gluten. Arrrgh. (I've found that it works best to emphasize the DISEASE in celiac disease, to help people understand this is a big deal medically speaking: he has a lifelong autoimmune disorder that means it's medically necessary for him to eat a strictly gluten-free diet.) On the plus side, the popularity of going gluten-free means that there are more and better food options available than before!

I agree with the PP who said it's easier in the long run to create a "new" diet instead of trying to re-construct the "old" one with gluten-free alternatives. We mostly eat "naturally gluten free" stuff these days--meals are things like ham and potatoes, stir fry, rice bowls, etc. When I sat down and brainstormed a list, I was surprised to find how many ideas I could come up with that were already gluten free or could easily be made gluten free with some simple swaps (rice instead of noodles in chicken soup, for example). Honestly, my kids have barely noticed the change. The only thing any of the kids really missed was homemade mac and cheese, which we've since started making again, now with GF noodles. I stock the kitchen with different snacks now, too: my husband used to love to take granola bars and Little Debbie's snack cakes for work snacks, but now he snacks on yogurt, string cheese, fruit, pudding cups, and tree nuts/trail mixes (he has mild intolerances to corn, soy, and legumes, but if he didn't we could add tortilla chips/nachos, hummus, apples and peanut butter, edamame, peanut-based protein/snack bars, etc. My point is that there are actually TONS of kid-friendly, naturally gluten-free snacks available once you start thinking about it.)

My husband still really missed baked goodies, so I started baking GF brownies and cookies for the whole family (I don't have the time/energy to make two different kinds!) I also keep a loaf of homebaked GF bread on hand, so my husband has a few more options when we don't have leftovers for him to snack on when hunger strikes, and so we can include him if we end up having grilled cheese one night. I didn't settle until I found recipes that were delicious, not just "good for gluten free"--these are all ones that the gluten-eaters and celiacs alike will happily devour. (I actually prefer the sorghum bread over wheat bread now!)

I have friends with kids who have other food intolerances/allergies, and they like to give their kid's teacher a bag of safe treats--so that when so-and-so brings cupcakes to school for their birthday, the teacher can pull out a safe treat to give to the allergic/intolerant/celiac kid in its place, so that they don't feel quite so left out. Others have trained their kids not to eat any goodies until they get home, where Mom/Dad can ascertain whether it's safe and then swap out a substitute if necessary.

Hope that helps a bit. Best of luck to your niece!

Treece68

I was diagnosed 8 months ago and it is still hard. You have to become adept at reading labels all labels and checking websites like celiac.com which has a lot of people sharing their experiences. You must check all spices, seasoning also things like soy sauce, worcestershire, bbq, salsa, smoothes, protein powders, deli meat.
I was just glutenated last month by boneless skinless chicken breast fortified with broth and I was sick for three weeks.
The best way to be safe it to make all your meals at home so you know exactly what goes in your meal. Thanksgiving I made all my own side dishes did not get sick. Christmas my mother (I love her she tries) made everything gluten free and I got sick.
Someone above said to give her teacher snack that you will know are GF that is a very good idea.
There are tons of websites out there with information read as much as you can.
Good Luck

cwsweetpea27

I was diagnosis is 2010 but my doctor GI don't think have it. But I have in a just and sometimes pretty bad. I do but some gluten free but I eat gluten sometimes. I have arthritis real bad and sometimes I think that Gluten makes it worse. What do you think

nvmomketo

cwsweetpea27 wrote: »

I was diagnosis is 2010 but my doctor GI don't think have it. But I have in a just and sometimes pretty bad. I do but some gluten free but I eat gluten sometimes. I have arthritis real bad and sometimes I think that Gluten makes it worse. What do you think

If you have celiac disease, you really should stop eating any gluten at all. Not even a crumb. It took me close to a year of GF eating to recover, and that included my celiac caused arthritis. You're damaging your health if you eat gluten. The pain, fatigue, brain fog and illness just isn't worth it.

Best wishes.

cwsweetpea27

It very miss diagnosis and my doctor don't no neither. I had a blood test back in 2010 and high and my doctor wanted to stay away from gluten. Thnx for the info.