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

Just When I Thought I Was Getting My Act Together...


africanqueen99

Recommended Posts

africanqueen99 Contributor

my other two kids got DX with celiac!

 

Sheesh.

 

The youngest (1.5) was DX on blood work alone since her number was so insanely high (two separate draws with crazy high numbers).  Obviously this puts her siblings on high alert.  Their blood came back elevated, but since it's elevated with a DX sibling it's more of an alarm.  Come to find out that the oldest kid (7) hasn't gained ANY weight in the last year.  She's looking thin.

 

The doctor said that they're clearly both "latent celiacs" and if they don't have it today they *will* get it in the future.  She even said she would be happy to write up her celiac letter for their schools today based on this knowledge alone.

 

As a mom I want all the information since we're clearly never going back to gluten.  So I'm putting them both back on one (gluten filled) granola bar a day until their endoscopes in two weeks.  We are gluten-free for only 1.5 weeks, but she's hoping the added "insult" of putting gluten back in will give her all the information she needs.

 

So I'm batting 3 for 3 with my kids.  Good genes in this house!!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

my other two kids got DX with celiac!

 

Sheesh.

 

The youngest (1.5) was DX on blood work alone since her number was so insanely high (two separate draws with crazy high numbers).  Obviously this puts her siblings on high alert.  Their blood came back elevated, but since it's elevated with a DX sibling it's more of an alarm.  Come to find out that the oldest kid (7) hasn't gained ANY weight in the last year.  She's looking thin.

 

The doctor said that they're clearly both "latent celiacs" and if they don't have it today they *will* get it in the future.  She even said she would be happy to write up her celiac letter for their schools today based on this knowledge alone.

 

As a mom I want all the information since we're clearly never going back to gluten.  So I'm putting them both back on one (gluten filled) granola bar a day until their endoscopes in two weeks.  We are gluten-free for only 1.5 weeks, but she's hoping the added "insult" of putting gluten back in will give her all the information she needs.

 

So I'm batting 3 for 3 with my kids.  Good genes in this house!!

I don't think thats long enough off it to see much change.

 

Look at it this way, now you can make the house entirely gluten free.

africanqueen99 Contributor

The house is already gluten-free.  It's been scrubbed, new necessary kitchen items purchased, etc.  I told the big kids that they have to eat their granola bar outside to keep all the crumbs out of the baby's reach. 

 

All my kids were "sick" and I couldn't even tell.  I need a crappy mothering award...

shadowicewolf Proficient

The house is already gluten-free.  It's been scrubbed, new necessary kitchen items purchased, etc.  I told the big kids that they have to eat their granola bar outside to keep all the crumbs out of the baby's reach. 

 

All my kids were "sick" and I couldn't even tell.  I need a crappy mothering award...

No, no. None of that.

They were tested because you were dx'd right? Imo, you are a very good mother for getting them tested.

africanqueen99 Contributor

Nope, they were tested because my youngest also didn't grow. Just having a pity party that two of my kids clearly weren't gaining weight and I blew it off.

I'll move on with that, though. We are on our way to healthier lives.

cyclinglady Grand Master

A granola bar sounds like oatmeal which will have little or no gluten (except for cross contamination during processing).  Be sure that it's a cereal bar with just wheat flour or bags of pretzels or Goldfish.  

 

At least you won't have to worry about your older kids getting peeved at the youngest for having the household go gluten free!  

 

Hang in there!

kareng Grand Master

I have 2 boys now 17 and 20 & 6 ft and 6'1. They had a couple of years where they didn't really grow. Its normal. It's also hard to tell, when you see them everyday if they are growing. I always bought their clothes a bit big and they often wore them out before they outgrew them. One bought the same size shoes for 2 years and then jumped 3 sizes. They are young and will catch up on their growth now.

At least you know where you stand. And it will actually be easier on them as they grow up. Some kids don't know anyone else with Celiac, your kids will always have someone else around that eats like they do. And family gatherings when they grow up will be soooo much easier. I am the only one in my family and I end up cooking all the food for family gatherings ( gluten-free of course).


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



Celiac.com Sponsor (A8-M):



africanqueen99 Contributor

A granola bar sounds like oatmeal which will have little or no gluten (except for cross contamination during processing).  Be sure that it's a cereal bar with just wheat flour or bags of pretzels or Goldfish.  

 

At least you won't have to worry about your older kids getting peeved at the youngest for having the household go gluten free!  

 

Good points! I have this box of gluten filled granola bars for a friend that I just went through. It's just organic junk food, but I found "snack bars" and "cheese crackers" - both with wheat flour as the first ingredient. It would have burned me up to have to buy anything considering how much food I gave away!! The middle kid would have loved cheese-its, but I think re-introducing them and then re-stripping-them-away might send him over the edge.

Yeah, they were peeved at the youngest for a bit when we went gluten light. Now they're all in the same boat.

Right now we are the middle of the crankiness of gluten detoxing. Oh how I can't wait for this process again <sarcasm>.

mommy2krj Explorer

Hugs mama!

 

My youngest is the diagnosed Celiac in our house as well except his siblings are 15 and 19 years old. I thought it was going to be a much bigger battle with the 15 year old than it has been. I'm thinking that's because HE is feeling better too since we've gone gluten free. His grades are picking up and he's less angry.

 

My youngest was my smallest baby as well. He doesn't seem to grow like either of his siblings. And while I know every kid is different....it's just weird to me to have clothes fit for years at a time instead of having to replace them every couple months (nice on the check book though!) He just recently went up half a shoe size.....otherwise he's been in the same shoe size since he was 3. He's 6. His brother was the complete opposite and grew through everything so fast I couldn't keep up. We replaced shoes every 3 months until this year (really hoping it's a real slow down!) the kid is in a size 15 for shoes! Ack!

 

Anyway, no bad mommy awards! The previous poster who said it's hard to tell if your kids are growing because you see them every day is right. My son's doctor says he's still on the growing curve so he's fine. Um. Ok. Sorry that I'm worried that he is so tiny and not growing even as fast as his sister did. :/

 

We got everyone tested here before we went gluten-free as a household and we all tested negative. So, I'm thinking false negative where my older son is concerned but if nothing else it is probably NCGI. He's beginning to notice how his body feels if he eats gluten after not eating it for a while. Personally, I'm liking the grades he's getting. :)

w8in4dave Community Regular

So many people find this stuff out so many years later!! Thank goodness you found out now!! Don't beat yourself up! Be proud that you have got it!! You have got it under control!! You are a great mom!! Thank goodness you found out!! Good luck on the challenge !

tshep Newbie

I can relate to how you feel, my three year old daughter was just diagnosed about a month ago.  I feel just awful wondering if that is why she has always been so so thin.  Since going gluten free, for the first time in her life, she will not stop eating!  Just to make a quick trip to the grocery store, I have to pack a few snacks because she wants to eat while we are out.  Once the older ones realize how much better their tummies feel after eating gluten free, I think the crankiness from having their foods "taken away" will dissolve.  My daughter proudly announces to everyone that she is gluten free, and she wont eat that bad gluten because it makes her sick! Smart little kids.  They are in good company in this generation, we have so many wonderful food options nowadays :) Good mama!

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 hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

    2. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

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

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748

    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • 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.