Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

More Restrictions


DylansMom

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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}>

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.