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

New Baby/how To Handle


smsm

Recommended Posts

smsm Contributor

I can't figure out the right sub forum for this question: I was diagnosed 2.5 years ago. I have two children and they were diagnosed at the same time (they were 1.5 and 4 at the time). Our house and our lives are entirely gluten-free and my husband never has gluten around me or the children under any circumstances. So, I am expecting our third and have been asked several times about this baby and gluten. Since I am strictly gluten-free and there will be no gluten around the baby, it will just have the gene but not celiac - correct? You have to have gluten ingested to trigger the actual disease? So, while the baby would never have gluten from me, around me or in the presence of it's (excuse the pronoun use of it!) siblings - what about out in the world? Birthday parties of peers or at a meal with just it's Dad? I can't figure out the status of what I would allow or how the baby should think of it's health. It is obviously genetically predisposed to have celiac and should therefore probably just stay from gluten as best as possible but does it need to be as strict as if already diagnosed? I may not understand the nature of how celiac develops - please help me out if I am on the wrong path or if you have any insights! Thanks!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Think of it this way, 30 percent of the US population or so have the genes, yet they do not develop it. Of that percentage only something like 1 or 2 percent actually do.

 

The child may never develop it. Of course, its something to keep an eye on due to family members having it.

smsm Contributor

Think of it this way, 30 percent of the US population or so have the genes, yet they do not develop it. Of that percentage only something like 1 or 2 percent actually do.

 

The child may never develop it. Of course, its something to keep an eye on due to family members having it.

Thanks for the thought! I do think that is important - the only thing that gives me pause is that 100% of the people in my immediate family with the gene did develop the disease. The population statistic doesn't seem to apply to us. In my (pretty large) extended family, nearly all the people have elected to not get tested and to suffer various health symptoms that I think might indicate that some of them have it. Of the three people that did decide to test, all of them tested positive for celiac. Not sure if that is relevant.

StephanieL Enthusiast

My kids are all gluten-free at home. My oldest has Celiac disease. My middle was tested after being exposed 3 days a week at school durring snack time as we don't let her have gluten in the house. My youngest is only 18 months and we haven't given him gluten directly (I breastfeed and am not gluten-free so he may/may not be getting any).  When he goes to school I assume it'll be the same way, he'll get snack and we'll test him once he's been getting it for a while. 

 

We plan on testing DD every 3 years or if there are symptoms of celiac disease developing. This is the standard for first generation relatives of those with celiac disease.

tarnalberry Community Regular

Unless you see a reason to assume that your LO has it, I would assume that he/she doesn't.  If you keep LO strictly gluten-free, you won't ever know if he/she has it - you can't find out without ingesting gluten.  If LO has gluten occasionally - at other people's houses, at preschool, with Dad, etc. - and has a negative reaction (more than one time), then you would want to go down the route of figuring out if you want to pursue testing.

 

My daughter hasn't been tested, and isn't strictly gluten free - we are 99% gluten free at home (she's had cheerios, and shares wheat-based bread with daddy when I'm not home sometimes), and she gets gluten if we share a snack with friends or when she's at preschool (though she usually opts not to eat the snack).  We've seen no symptoms, so I assume that she's not celiac at this point.  I don't know if she carries the genes; she hasn't been tested.  But we are aware of what to keep an eye out for, and will pursue testing if we feel it does become an issue.

nvsmom Community Regular

I would consider keeping the baby gluten-free - why risk developing an autoimmune disease with horrible symptoms and risk developing more health problems just for the convenience of being able to eat what peers are eating at birthday parties a few times a year? Packing food to share is easy, and to be honest, if he/she is allowed to eat food that the older siblings can't, it is going to cause problems.

I would say, keep him/her gluten-free until adulthood (if possible) and then he can make his own decisions regarding gluten. All3 of my kids are gluten-free even though only 2 shows signs of gluten intolerance. He isn't missing out on any vital foods and I am not risking his health for convenience's sake.

Good luck.

GottaSki Mentor

My youngest Grand has been gluten-free since birth -- consequently it will likely be years before we know if she has celiac disease.  Her brother, mother and I have it so their home is completely gluten-free.  Her pre-school keeps her gluten-free as she attends the same school as her older brother and it is easier for their Mom to request both kids stay gluten-free -- also this little 3 year old does have other food intolerance although she has never had gluten -- but is the healthiest toddler this family has had -- sooooo living gluten-free can't hurt.


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



Celiac.com Sponsor (A8-M):



Denine Newbie

Interesting to read.  My daughter is only 10, but will have to deal with this some time in the future.  Of course, by then, so many things may have changed.

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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    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

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.