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

Barley extract


Rsianmay

Recommended Posts

Rsianmay Newbie

Hi my 15 year old has recently been diagnosed with cealiac disease, I am just finding it hard at the minute, does anyone know of he is allowed normal Coco pops as they contain barley extract and I was told to avoid barly? 

Thank you 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Rsianmay,

No, he shouldn't eat anything with wheat, rye or barely.  In addition, it would be best not to feed him oats for 6 months also.  !0% of celiacs also react to oats.  So if he is eating oats while trying to heal it might confuse things if he does react to them.

It would be best to keep him away from all processed foods for a while.  It can be hard to figure out what products are safe to eat.  There are cereals and other foods that are gluten free now and they are marked gluten-free.  But the safest thing is to stick with whole foods, like meats, veggies, nuts, and eggs.  Celiac disease is an AI (autoimmune) disease and that means the bodies own immune system attacks it.  The classic symptoms are digestion symptoms, but celiac can also cause damage to many other parts of the body.  Celiac is not like an upset stomach where you get over the problem in a few hours or days.  The immune reaction can go on for weeks to months.  So avoiding all gluten is very important if the body is to have a chance to heal.

Many people with celiac also have problems digesting dairy also.  That should pass after a few months gluten-free.  There are dairy free milks available like almond milk and rice milk now.  I don't recommend soy milk though.  Some people decide to eat dinner type foods for breakfast instead of cereals.  I like to have pre-cooked meats like bacon, or sausage or something ready to grab in the morning.  Quaker gluten-free rice cakes are also good with peanut butter.  It's important to get plenty of protein while healing the gut as its needed to rebuild damaged tissues.  The small intestine if spread out is about the size of a tennis court, so there is lots of tissue to rebuild.

There are problems with cross contamination to watch out for also.  It only takes a very small crumb of gluten to kick off the immune reaction.  So, sharing a peanut butter container with people who eat gluten is a no-no.  Sharing a toaster with gluten eaters is also a  problem.  A colander is also bad because the little holes are hard to properly clean of gluten residue.

Mission corn tortillas are gluten-free and fairly cheap.  They make an ok substitute for bread.  I sometimes run water over both sides of the tortillas and nuke them for 15 seconds to soften so they don't crack when rolling them.  Udi's bread is available in gluten-free versions also.  But it is a lot more expensive than gluten bread.

Simple whole foods are safer for us because they don't have long lists of ingredients to check.  Most processed foods are full of chemical additives that make them sell better but really aren't food.  Going gluten-free can be a very healthy choice if you switch to a whole foods diet.

Another thing to know is that celiac disease genes can be passed on from parent to child.  Having the genes just means you could possibly develop the condition, not that you automatically will get celiac.  About 30% of people in the USA have one of the genes for celiac disease, but only about 1% actually get celiac disease.  But the risk is higher for first degree relatives of a celiac.  So parents and siblings should be tested every few years or sooner if GI symptoms appear.  There are many symptoms of celiac besides GI symptoms, and some people have no GI symptoms, but still have body damage.

That's a lot, but the main thing to know is you live well with celiac disease and be healthy.  We just have to be careful with our diet.

Welcome to the forum! :)

 

Jmg Mentor
2 hours ago, Rsianmay said:

Hi my 15 year old has recently been diagnosed with cealiac disease, I am just finding it hard at the minute, does anyone know of he is allowed normal Coco pops as they contain barley extract and I was told to avoid barly? 

Thank you 

Hi and welcome :)

I think you may be in the UK? If so, the free from sections of larger Tesco's and other supermarkets often stock this:

Open Original Shared Link

Definitely don't go for the regular ones. I reacted to barley malt in a brand of cornflakes despite them being previously declared safe by coeliac UK.

Have you joined Coeliac UK? They have an online database of safe foods and will send you a book listing them. It's definitely worth a go. 

Best of luck to you both :)

 

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. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

    2. - 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.

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

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

    4. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    5. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

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

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

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748

    Gracieruizzz
    Newest Member
    Gracieruizzz
    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

    • 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    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.