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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    2. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    3. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    4. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    5. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      yes i do take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
×
×
  • 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.