Celiac Disease Vs. Gluten Intolerancei

Updated on May 21, 2012
K.G. asks from Waconia, MN
15 answers

Hello, mamas and daddys!

I have switched to a gluten-free diet because I have a kidney disease. Apparently, gf is easier on my kidneys and gives me a better chance to avoid dialysis and transplant. I feel better now tha I have in years, and it's only been a few months.

My son is on a gf diet because he has autism and we've seen some great progress in his recovery after switching.

But when people ask if we have Celiac disease, we say no. Because we don't. But then it seems that they assume it is a fad diet, or a choice, or something we are doing to be cool.

How can we explain that we need to follow this diet strictly so we can continue to improve? And how can I explain that while intolerances are not as severe as Celiac disease, we still have issues with gluten? And hs anyone found a polite way to bring "safe" food to potlucks and other get-togethers?

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So What Happened?

Thanks for your response, everyone. It helps to know I'm not alone in this.

A few points of clarification...
1. No, there is no way my kidney disease is caused by gluten sensitivity. It is genetically handed down from generation to generation.
2. My husband is a pastor, so every Sunday during coffee hour when everyone else eats cookies and bars, my son and I have our "safe" food. It is almost impossible to convey how harshly pastors are judged, and their families fall under similar judgement.
3. During Lent and Advent (the times before Easter and Christmas), there are special services and special meals. They are not potluck. If we go and don't eat, we are "too good for the food" and, thereby, the people who prepare it. If we bring our own "safe" food, we are snubbing everyone. If we eat beforehand and just try to have coffee and talk with people, we are also "too good" for those around us. I would like a way to stop the judgement. While that may never happen, I remain optimistic!
4. When it comes time for potluck, we always bring food to share that. Meets our dietary restrictions. I. Also always bring extra because there is very little in the Midwest diet that meets those restrictions.
5. Those restrictions for me: vegan, gluten free, but I can have eggs. (There are lot more restrictions, but those are the "easy" ones to put into practice. For my son: gluten free, casein (dairy protein) free, no pork, soy, shellfishh, artificial colors or flavors, preservatives, sulfates/sulfites, or nitrates/nitrites. Also, no almonds. We're a hot mess, but we're both getting better!

Featured Answers

T.C.

answers from Austin on

If people ask if you have Celiac disease, maybe you could say that you have something very similar. That way you are still communicating that it is a health issue without having to go into the details that might confuse them.

6 moms found this helpful

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T.S.

answers from San Francisco on

I'm so sorry you feel the need to "explain" yourself to family and friends. I hope you can just continue to say, we don't have Celiac's disease, but we find gluten irritating to our digestion, so we prefer not to eat it.
I feel the same way about dairy. I'm not allergic or intolerant, but when I eat less of it I feel a whole lot better!

4 moms found this helpful

L.B.

answers from New York on

Unfortunately, some people will never get it! My son and I have celiac disease. One of my friend's constantly makes statements that indicate we are just on a fad diet. One time she said in a snarky voice "well its not like he will die if he eats something with gluten in it" That is when I knew not to eat at her house because she would probably not respect our diet.

As far as pot luck, just make something that you can eat and you do not have to explain what it is to anyone. Eat before you go and focus on
socializing more than on the food. There are plenty of foods that are naturally gluten free that people who can eat gluten would enjoy. So bring something good and don't feel like you have to explain anything.

Rice salad
Tomato and mozzarella salad
Garden salad
fruit salad
Corn chips and salsa or other gluten free dip
chicken wings marinated in gluten free marinade
potato salad

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M.P.

answers from Portland on

You explained it very well in this post. IF they don't "get" it it's their problem. You don't need to convince anyone that you're doing the "right" thing or that it's a medical issue. Ignore others comments. Do what is best for you and your family. I'm glad it's helping you.

Do as GrammaRocks has suggested. Take food you can eat. Put it on the table without making an explanation. EAt only others food when you know it's gf. Don't mention what you're doing. It is really no one elses business.

When you try to explain you're making the problem great than it is. If someone asks give the explanation you gave her but don't volunteer information. The average person doesn't care.

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J.B.

answers from Atlanta on

I just let people know that I feel so much better when not eating gluten (or much of it) that I won't eat it anymore.I don't think it requires a bunch of explanation. I actually cannot stand potatoes at all -in any form -any longer! Yes, at some family functions and whatnot this has taken some time to sink in, but after over a year of not eating certain side dishes and things, people finally seem to get the fact that I don't eat the stuff.

I've never asked anyone to prepare anything different or change their menus though. Why would I? It IS a choice if you don't have Celiac's! Yes, I feel pretty awful when I eat a lot of glutenous food, but I don't have an actual disease or allergy or anything. No one prepares meals where every dish contains gluten. You should at least be able to eat the veggies or salad. As far as pot lucks -why would you ever need to bring dishes containing gluten? Again, I see no need for explanation when bringing food to a pot luck. Fruits, veggies, meats and tons of different casseroles, dips and other items have no gluten.

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R.K.

answers from Appleton on

I have the same issue with MSG -- I can't eat it and if I do I get sick for 3 days. When I go to restaurants I always ask if they have MSG in the food and sometimes I get a totally blank expression 'what's MSG?' How would I know? I just order coffee and talk to my friends and pick up something I know I can eat on the way home. Some people don't want to get it. They eat whatever they want and if they don't feel well they run to the doctor and beg for medications to make them feel better. I tell them if hey would watch what they eat cut back on salt and look for MSG in their food they would feel sooooo much better.
It's no different with gluten, my daughter has celiacs, my granddaughter is autistic so no dairy, low gluten and no MSG, my grandson is allergic to eggs, my DIL allergic to seafood, other granddaughter allergic to watermelon. If we go to a potluck we take foods we can eat and know we will be okay.
I recently found a cookbook at Half Priced Books called The Kids Alergy Free Cookbook. All recipes are gluten free -- dairy free-- eggs free -- peanut free -- and tree nut free. I gave my two daughters and DIL a copy for Mother's Day.
Don't waste your time trying to explain your food sensitivity to people just say 'we choose to eat gluten free'.

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J.W.

answers from Lexington on

Celiac is just a subset of gluten-sensitivity. Both my daughters and I cannot have gluten or dairy. None of us have been tested for Celiac (via intestinal biopsy), but the younger daughter had rather severe intestinal malabsorption, I had hives for years, and was on 6 medications to suppress reactions.

We just say, "I am allergic."

By the way, you may want to read this:
http://itsnotmental.blogspot.com/2011/08/brain-health-cut...

3 moms found this helpful

S.T.

answers from Washington DC on

well, it IS kind of a faddy thing. i'm always amazed at how many people seem to think that gluten-free is a weight loss plan.
:/
that doesn't mean it's not real to folks who really do have issues with it.
i'm not lactose intolerant by any means. i love dairy, and we usually have raw milk in the house. but i'm also aware of how much better i feel when i stay away from dairy, so for the most part i do.
i'm not sure why you need to do so much explaining. if someone has a need to lecture you on your food choices, they're not really worth spending TOO much time eddicating, are they? shrug and let them be as judgey as they like. most people will simply take your statement 'a GF diet makes us all feel and function better' and that'll be that.
also no idea why you need a polite way to bring food you can eat to a potluck. everyone i know does that, vegans, vegetarians, paleos, carb-watchers, dairy-frees and so forth. i can't imagine going to a get-together that would expect people to bring food they can't consume.
khairete
S.

2 moms found this helpful

R.R.

answers from Los Angeles on

I would simply say you have issues with gluten, you do. You don't owe a detailed explanation, why concern yourself with what they may assume? You are dong what is best for you and your son.

As far as taking food to potlucks and get-togethers, take what you and your son can safely eat, period, others WILL eat it. You don't need to announce it is gluten-free. How could that be considered impolite? I am attending my high school reunion in 2 weeks and am taking my own food to the BBQ as I saw what is being served and can't handle it. I would love to make something for everyone but haven't decided what.

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B.A.

answers from Chicago on

We have celiac and gf sensitivity. To those you know should understand, state it is like an allergy and your body is damaged when you eat it. If UT is one if "those" people who feel they have to know and judge everyone just tell them "we could feed you just a bit of arsenic over time and while it may cause ni symptoms today or tomorrow, in the future after your body has struggled to fight its effects it will succumb to a debilitating horrible death. do you want to try it because obviously your serious about me doing to equivelent with my body."
Okay a little snarky today but said it to a family member yesterday and it finally got them to quiet after 5 years.

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C.W.

answers from Washington DC on

Celiac Disease is just a certain type of gluten intolerance. It is not any more sever or worse than intolerance, just gets a scarier name. I am in the middle of getting an answer to over a year of basically hell.
Have you read Healthier without Wheat by Dr Stephen Wangen?
I think it might help you a lot. Your kidney disease may be a symptom of your gluten intolerance.

And making your own food is the best bet for sure. Pasta salad from a gf pasta is a great option

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R.J.

answers from Seattle on

No... What I have, unfortunately, is worse...Kidney disease.

(And if it's extra info time)

Certain things start causing my kidneys to shut down. Since gluten also affects kiddo so strongly, his docs are also worried about gluten shutting down his organs, as well. Celiacs would be easier, since people get that. But Celiacs affects the digestive tract, and I have different organs that get all messed up. So it's hard, you know? ESP with all the fad dieting. But to me, it's the difference between dialysis or organ transplant.

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M.S.

answers from Minneapolis on

It sounds like you are doing the right thing in bringing your own "safe" food to potluck to share. And I agree with other responders--you don't have to give too much information. "We're just trying to watch our diet" should suffice. Or if they ask if you have Celiac and you aren't close to them, I don't see any harm in saying Yes, because what you have to do to take care of yourself is similar. If you give them more information and they judge, there's not much you can do about it. You'll have a hard time expaining your son's diet. I have a friend whose son has autism and she firmly believes diet has nothing to do with anything. People are still really resistant to that idea. But I fully support you--traditional Midwestern food does not lend itself to gluten, dairy-free diets, and I can appreciate your predicament.

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C.D.

answers from Atlanta on

Like a lot of these ladies said, people just don't get it. You don't have to explain it all. And besides people ask or say something, but they really don't want to hear your answer most of the time. Most of them are too busy judging as they ask. Not all. A lot of people think you're putting on a show of some kind or something.

I have a big problem with MSG and people still don't get it, like my own husband. And my sons forget most of the time, my daughters know as they have the same issue. My neice has to stay on a gluten free diet and she just doesn't say anything to anyone that doesn't know her well. I certainly feel better when I stay away from gluten, but I can take a small amount.

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T.B.

answers from Minneapolis on

Oh honey, I treat people with natural solutions, and right diet will help anyone feel better. If people were not deceived by the media markets and marginal medical practices, every one would eat healthier too. This truth is something I've been praying for people to know. Read this article and follow some of these recipes and continue to be a leader to impress upon others that eating healthy for this is how we honor the bodies God gave us. http://wellnessmama.com/575/how-grains-are-killing-you-sl...
I don't eat sugar, corn syrup, dairy, soy,or wheat, for that is how parasite live in us and chronic disease symptoms start. May I also suggest doing a natural parasite cleanse for the whole family, don't be offended by this because over 40 billion people today have parasite and don't know it. Many times doing a natural cleanse will help your body heal faster. http://www.youtube.com/watch?v=yRglUAttmzQ
I make my own cleanse for patients with any illness, but here is good one to try http://www.drfloras.com/.
If disease can live in your body so can parasites. Studies today show that most cancer, Alzheimer, most chronic pain and disease symptoms of all kinds- contain parasites cells, found from bio pathological scientist. Just make sure it is natural medicine not man made. Google the connection between the two. God bless
watch Dr. oz about this_ cleaning out our system will change your life.

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