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Living With A Celiac Child


jstoy

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jstoy Newbie

:)

Hi, my daughter just found out a few months ago she had Celiac. I started this post because I read someone lost some weight. Now it's my daughter with the Celiac and she feels good now and lost some weight and laughs and says "Mom, you will lose weight if you go gluten free!". Now I need to lose about 10 pounds but eating chicken and stir fry is going to make me crazy.

Living in the same household with someone and having no knowledge of this was driving me crazy. I slowly realized this is not going away. Shopping is easy for her, she does alot of research on foods constantly. I went shopping with her one day, looking around at what I would love to buy and felt guilty and walked up to her and said "I'm Going to Starve To Death", she laughed. We went thru the store and she bought all the things I eat except bread. Gluten Free Bread is $4.99 a loaf and taste awful. It's ok for toast but a sandwich, yeck!, we don't eat alot of bread so it's ok. I use to sneak snacks and things into my room. I am slowly going Gluten Free so I don't have to worry about her. Cross contamination is a concern of her's but apparently not the biggest issue. She knows I do what I have to for her protection. I now understand how serious this is and how sick she can get.

We buy rice noodles instead of pasta and have alot of stir fry. I still have to have my meat. She only eats chicken and turkey. I can't live that way :unsure: . So I do my best to protect my girl. She is 32 and this has been an illness that we know of for 7 years.

I have decided to write about it, being I am living with it myself being in the household and everything. I have joined a few blog sites on it so I can get more info. I have read everything about Celiac on the internet I possibly can. She makes fun of me when I get a stomach ache and says "Mom, you have gluten poison" , we can joke about it, even though it is serious.

So here I am, going thru all the forums here and getting acquainted with Celiac Disease. Thank you for listening.

  • 2 weeks later...

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HulaMom Newbie

Hi jstoy!

I too am starting the gluten-free Diet because of my daughter. She's 8 and my friend told me to get her tested (stool test by Enterolab) her count was 177 (less than 10 is normal). School lunches are a little harder because of the sandwich situation but she's dealing with rice cakes and cream cheese (among other things :) )

About 15 years ago, I was tested (via blood sample) and found out I was allergic to large amounts of bread products (it broke it down to actual items, not ingredients). I pretty much ignored it, thinking "how can I lose weight if I don't eat bread?" It is OF COURSE on the bottom of the food pyramid... a one-size-fits-all guide lol :wacko:

After I had my first child, I couldn't get the weight off and my mother in law told me to do the new "high protein, low carb diet". I did and I went from a size 18 to 14 in 3 months! Obviously, my body was geared and ready for something like that and I remembered that blood test and everything was clear after that. I kept off of carbs and my weight stay down until I wanted to have another baby and thought that maybe a low carb diet wouldn't be good for pregnancy, so I went off of it.............. and haven't had the willpower to get back on it :(

Now that my daughter is gluten-free, I'm there for her support and doing it along with her (which helps with the accountability) and hopefully some pounds will shed ONCE MORE!

My friend (who's daughter has Celiac) said that the best sandwich bread by far is the Gluten Free Pantry Favorite Sandwich Bread. She said it feels and looks most like regular sandwich bread. I haven't tried it myself YET but I will soon...

Good Luck and Have a Great Day! ;)

Ruth

  • 4 months later...
David Favor Newbie

Gluten Free eating is very simple, once you get the hang of it.

Best first start is craving decoding of why you're desiring substances (I hesitate calling them foods)

which contain gluten.

Is it for the substance's sugar, fiber, EFAs (essential fatty acids), amino acids, minerals, antioxidants, etc.

Once you pinpoint the source of your body's desire, experiment with alternatives.

We import Chia, Golden Flax and Hemp Seeds as great gluten alternatives. They taste better and we feel better.

You may enjoy starting with these alternatives to rice, soy, grains, flours.

Many times people crave gluten rich foods as carriers for dairy (high quality EFAs) like butter and sour cream.

Unfortunately for many people, dairy products are the highest quality EFAs they have access to in their lives.

For most, a first step is also upgrading to be dairy free and for many completely animal product free.

The reason for this is when bodies crave meat and dairy, the inherent acidic pH produced by eating these foods

can be buffered somewhat by adding in fibrous, sticky, spongy material in a futile attempt to balance pH.

Consider whether you enjoy eating gluten products by themselves or if you require something 'spread' on

them, like a dairy product. If you require the dairy product to make the gluten food edible, then what you're

probably faced with is a requirement to first upgrade your EFA intake with Chia, Golden Flax, Hemp, Avocado,

Raw Olives. This said Golden Flax works much better than Brown and all these products are best in their most

Natural State (no/low processing) possible.

My wife have nearly 50 years of gluten free eating between us and just looking at gluten foods turn our stomachs.

We much prefer foods which taste better (other than cardboard) and produces a massive uprush of energy,

rather than food commas.

If you have challenges with your experiments, post a reply and I'll assist.

Enjoy your best day ever!

- David

dandelionmom Enthusiast

I found out I have Celiac Disease when a lifetime of gastro problems (and assorted other issues) went away when I went gluten-free to support my daughter when she was diagnosed with celiac disease. Gluten-free is a lot easier when the two of us are doing it together and she really likes it that we are "gluten-free girls" together. :)

I'm not crazy about the bread either but Kinnikinnick white sandwich bread and english muffins are pretty good. I also like to use corn tortillas to make sandwich wraps.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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