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jca's avatar

Do you know anybody with Celiac Disease? If so, how is it for them?

Asked by jca (36010points) March 17th, 2011

the child of one of my friends just got diagnosed with Celiac Disease. I can see, from the internet, that it will mean a whole lifestyle change as far as what he eats and how they will all be more aware of the food they serve.

Do you or anybody you know have Celiac Disease? What is it like for them? Have they developed any other illnesses as a result? Have they adjusted well to a gluten-free diet?

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16 Answers

gailcalled's avatar

Some immediate members of my family just got the diagnosis. Ages 51, 7 and 11. They are adjusting to a new way of cooking, eating and thinking about food. Like any change, it has been initially difficult, but now they are in the swing of things.

The 51 yr. old father does the gluten-free baking. There are lots of cook books.

There are also many choices of breads and cookies in any decent health food store.

heresjohnny's avatar

My Mom has it. She said it was tough adjusting at first, but she has gotten used to it and feels much better now with a gluten-free diet. It’s difficult when she travels and she has to be very careful, but it’s manageable.

BhacSsylan's avatar

I have a college friend who has it, and knew since a young age. It takes adjusting, but it didn’t seem to trouble him that much. And the earlier you know the easier it is for those changes to occur. His mother was also a dietitian, though, so that probably heps.

Simone_De_Beauvoir's avatar

Yes, a friend of mine from college has it. She writes a blog about it.

SpatzieLover's avatar

My son may have it. We are currently in the diagnosis process. For now, we must continue to give him foods with gluten.

Even if a person is just considered gluten intolerant, it is best to follow the Celiac gluten-free diet.

What it means for us now:
We limit the daily intake of gluten to one serving. This way he doesn’t get violently ill, but keeps gluten in his system for the upcoming tests.

What it will mean for our future:
No gluten of any kind to help prevent permanent/irreversible illness.
We currently eat a non-standard American diet, in that we choose to eat organic, fresh foods. Our son is a vegetarian, and nearing a vegan on many days now, by his choice. In the future, it will mean baking our desserts & breads on our own. Our son doesn’t like anything restaurants offer besides grilled cheese…so unfortunately, that “treat” will be out for him.

We are looking into changing our entire family’s way of eating. If our son is diagnosed, we will no longer eat gluten in our home. We have already discussed and planned to aim toward a more standard Asian diet.

Luckily we are already “label readers”. Gluten is now found in a ridiculous amount of foods in this country. Unfortunately, oats are processed in many plants that process wheat, rye & barley. We are now searching for more certified gluten-free products. As awareness grows, more companies are making truly gluten-free products (lipbalms, modeling clay, frozen waffles).

My sister and my mom had significant food allergies as kids. Neither of them have ever been tested for Celiac. Both have immune deficiencies.

I have not been tested for Celiac. I was not diagnosed with any food illnesses as a child, but had a lot of health problems. After doing all of the reading I can to educate myself for my son, it appears I have several symptoms. I may also have an immune deficiency. Most of my efforts have been directed toward my son’s health for a year now. Once the dust has settled, I will focus on me.

@jca for your friend’s child the most difficult part is making the child understand that even a little gluten is not okay. There will be no more candy bars, or birthday treats at school. No more Play-doh, or flavored lip balms.

We do have friends that have four children. Of the four, two have severe gluten intolerance. In their home, it’s most difficult for the siblings, as they can eat gluten, but it isn’t allowed in their home. The mom throws “after bedtime” birthday cake parties for the gluten eaters.

YoBob's avatar

Yes, a fellow I work with who also happens to be the father of one of the kids in my sons Boy Scout troop is Celiac. Generally, it is no different for him than it is for anyone else who has to follow a special diet. I think the biggest impact is avoiding gluten. The good news is that we have the good fortune to live in a time and place where there are an abundance of dietary choices available.

At our last canoe trip this particular gentleman was in charge of lunch for the adults plus snacks. All I can say is we did not go hungry!

Jeruba's avatar

my former manager has it, as does her brother. she is extremely watchful of her diet. i’ve seen her eat a lot of rice and soups and salads. i must say she’s a long way from thin; it was work stress that finally made her lose weight.

she’s talked about her brother’s very aggressive approach when dining out: he will actually ask to go into the kitchen and speak to the chef and explain that they can’t have anything that has even been prepared near or on the same surface with wheat products. they can’t risk a single stray breadcrumb. she is content to speak to the waiter very pleasantly and explain and ask for a variation of a menu item. she is always well accommodated.

this estimable woman has prepared thanksgiving dinner for a large crowd at her home (she’s the eldest of six, all of whom have kids), accommodating not only the celiacs but the vegetarians. they had plenty to eat, she said.

Neizvestnaya's avatar

An aunt of mine and one of my friends. My friend has chosen to be gluten-free and says it changed her mood swings during stress, alleviated a ton of allergic symptoms, banished what she had feared was chronic fatigue syndrome and regulated her weight. My aunt eats limited amounts of gluten and says her energy levels increases a lot, she actually put on seem needed weight, started to sleep better and noticed her sex drive went up.

Jeruba's avatar

@Neizvestnaya, please clarify: your aunt experienced those improvements when her consumption went up or down?

Neizvestnaya's avatar

@Jeruba: My aunt experienced improvements when her consumption of glutens went down. She still eats some but watches it carefully and still is greatly improved.

Rarebear's avatar

Tons of good information here
http://www.celiac.org/

drdoombot's avatar

My best friend was diagnosed with Celiac nearly a year ago and has not adjusted well at all. He loves bread and other foods made with white flour, so despite the extreme bowel discomfort and potential future health problems, he eats gluten anyway. He claims he’s now used to sitting on the bowl in the wee hours of night and that it’s worth the cost.

He was able to keep the diet early on when his wife was on board to make the house gluten-free, but she eventually decided that the kids needed some gluten products, and as these foods started appearing in the household again, my friend started to break his diet.

His experience makes me think that the best way to help someone who can’t eat gluten is to go to great lengths not to tempt them.

SpatzieLover's avatar

His experience makes me think that the best way to help someone who can’t eat gluten is to go to great lengths not to tempt them. Thank you for the insight @drdoombot . That’s what we were thinking, too

Jeruba's avatar

@drdoombot, I agree with @SpatzieLover that that is a kind and supportive attitude to take, especially as the person goes through a difficult adjustment that could take months to accomplish.

But family should not have to forego their normal diet permanently because one person can’t have certain items. The world is full of things this child must avoid. I think it’s best if he learns his own discipline and doesn’t rely on the sacrifice of others to keep him safe. His own knowledge and strength are his best protection. He can learn (as many of us with dietary restrictions have learned) just to know and think “That’s not for me” and not even be tempted by it, any more than we’d be tempted by prettily packaged poison.

gailcalled's avatar

@Jeruba: TJAM can now type upper-case letters. Yay!

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