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DylansMom

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DylansMom Rookie

Okay, we saw the Dr to go over the biopsy results and again he emphasized how bad Dylan's Celiac is. Ulcers, no villi, no mucus, something else but I can't remember what it was now, but also because of all the damage the Dr wants him off all dairy and occasionally using Lactate (or whatever they are called) tablets if I allow him to eat dairy, like ice cream or something. Okay, so now where do I go (if possible) for things like margarine (for muffin mixes) or cheese. Basically the poor kid is safe only with chicken. I am really feeling the frustration with this situation. Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

Any suggestions?


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Carriefaith Enthusiast

I also have to avoid dairy. Here are some of my subsitutions for dairy:

Milk - So Good Soy milk, can be used on cereal, in baking, smoothies, ect.

Butter - Earth Balance

Ice Cream - So Good ice cream

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Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

For pizza, I buy Kinnickinick premade pizza crusts and put gluten-free Kraft pizza sauce on it or Ragu pasta sauce. For toppings I use hamburger or cut up chicken, onions, mushrooms, red and green pepper, tomatoes, ect.

Sorry to hear about your son... I hope he is feeling better soon.

kvogt Rookie

Be careful with the soy products... especially with children. Many of us with gluten and dairy problems also have soy problems. Pay close attention to his reactions after consuming it.

Hennessey Rookie
Okay, we saw the Dr to go over the biopsy results and again he emphasized how bad Dylan's Celiac is. Ulcers, no villi, no mucus, something else but I can't remember what it was now, but also because of all the damage the Dr wants him off all dairy and occasionally using Lactate (or whatever they are called) tablets if I allow him to eat dairy, like ice cream or something. Okay, so now where do I go (if possible) for things like margarine (for muffin mixes) or cheese. Basically the poor kid is safe only with chicken. I am really feeling the frustration with this situation. Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

Any suggestions?

<{POST_SNAPBACK}>

My son has numerous allergies dairy being one of them...for margarine I use Fleishmans Light Margarine...it is soy free as well.. What about trying sorbet for a treat instead of having to deal with lactate pills. I also give my son vanilla flavored rice milk mixed with his prescription formula, there is plain flavor too that I use for baking but you need to check labels, some rice milk contain barley protein.

Claire Collaborator
Okay, we saw the Dr to go over the biopsy results and again he emphasized how bad Dylan's Celiac is. Ulcers, no villi, no mucus, something else but I can't remember what it was now, but also because of all the damage the Dr wants him off all dairy and occasionally using Lactate (or whatever they are called) tablets if I allow him to eat dairy, like ice cream or something. Okay, so now where do I go (if possible) for things like margarine (for muffin mixes) or cheese. Basically the poor kid is safe only with chicken. I am really feeling the frustration with this situation. Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

Any suggestions?

<{POST_SNAPBACK}>

Soy Garden Margerine (100 vegan) - gluten free as a spread or for baking.

For a 'sometimes' treat with cheese - get the oldest hard cheese. Also unpasteurized cheese - the Swiss seems to be well tolerated. You can use a Lactaid tablet with it to be on the safe side but generally unprocessed, unpasteurized cheese will work out. Unpasteurized may be hard to find unless you live near or can get to Whole Foods or a Common Market. You usually can find this grated also. I recently posted a Rice Pizza recipe that is delicious.

Give him 1/4 tsp. of baking soda in water every day. The cuts the stomach acidity, makes his tummy climate better. Chicken and fish should do well - also lamb is very tasty and easy to digest when fat is drained off. Meat is tough on the tummy - so some but not too much.

As he heals the dairy may be less of a problem. Claire

ryebaby0 Enthusiast

We also use Imperial Margarine, and Rice Slice "cheese" which isn't casein free but is lactose free. Breyer's makes a lactose-free vanilla, but while we were off dairy my son developed a taste for Philly Swirl products. Try Miss Robens (www.missrobens.com) for a look at what's out there.

At dx, we also dealt with "no villi" and within 6 months we were on a fairly normal gluten-free diet. But for the first 8 weeks, my son ate nothing but rice, chicken and olive oil for all his meals (with Silk soymilk, water, or Almond Breeze). It really wasn't as awful as you imagine! Then he added one food every week, then every three days, from a list he and his GI made up (he was 10 at the time). Sort of a reverse elimination diet....

Anyway, healing takes a long time, but if you simplify your cooking, it gives you a breather to plan for the future while you wait for better health. While he was only eating rice and chicken, I was working on finding substitutes for his formerly favorite foods. Two years later, he still loves rice and chicken -- I think it's the security of knowing it will always go down easy.

tarnalberry Community Regular

BTW, salami almost universally had dry milk.

I presume that he can still have some fruits, and vegetables, and rice and beans?


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tess Newbie
Okay, we saw the Dr to go over the biopsy results and again he emphasized how bad Dylan's Celiac is. Ulcers, no villi, no mucus, something else but I can't remember what it was now, but also because of all the damage the Dr wants him off all dairy and occasionally using Lactate (or whatever they are called) tablets if I allow him to eat dairy, like ice cream or something. Okay, so now where do I go (if possible) for things like margarine (for muffin mixes) or cheese. Basically the poor kid is safe only with chicken. I am really feeling the frustration with this situation. Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

Any suggestions?

<{POST_SNAPBACK}>

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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
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • 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. 
    • trents
      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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