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

Why Can't Extended Family Members Get It?


Skeet

Recommended Posts

Skeet Rookie

Ugh. My mom mainly. MIL somewhat.

My son is 8.5 mos now. He eats at least 2 solid meals a day now, and is still BF. I kind of figured he'd be weaned by now, and my hubby is ready for him to be weaned... but I'm not. :P

Anyways, our extended family is always wanting to give him stuff: the gerber puffs, cake, etc.

No matter how many times I tell them "YES A CRUMB WILL HURT HIM" they think I'm over-reacting. And they've even seen my husband's DH! They know what gluten can do, but they think since my son doesn't react the same way that he'll be ok.

How does everyone else deal with this? Do I just not let them watch him? :( I don't want to be that mean, but geesh - he is MY son!

Also, we don't have a diagnosis for celiacs since he's so young. Thoughts on whether a genetic test would be worth it? I mean, we KNOW my DH is a celiac, so already the possibility of inheriting it is there. I am a bit worried that an official diagnosis would make it hard to insure him. (we're self employed)


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



Celiac.com Sponsor (A8-M):



Michi8 Contributor
Ugh. My mom mainly. MIL somewhat.

My son is 8.5 mos now. He eats at least 2 solid meals a day now, and is still BF. I kind of figured he'd be weaned by now, and my hubby is ready for him to be weaned... but I'm not. :P

Anyways, our extended family is always wanting to give him stuff: the gerber puffs, cake, etc.

No matter how many times I tell them "YES A CRUMB WILL HURT HIM" they think I'm over-reacting. And they've even seen my husband's DH! They know what gluten can do, but they think since my son doesn't react the same way that he'll be ok.

How does everyone else deal with this? Do I just not let them watch him? :( I don't want to be that mean, but geesh - he is MY son!

You could take the stance that others cannot feed your son food that he has not been properly introduced to. After all, he's only 8.5 months old! Breast milk (or formula if one doesn't breastfeed) should still be his primary source of nutrition at this point...at 8.5 months, solids don't provide enough variety and nutrition for proper growth.

BTW, keep breastfeeding as long is best for you and baby...hubby shouldn't really have anything to say about it. BTW, I breastfed all three of my kids between 2 and 2.5 years, and I firmly believe it was the best for my kids' development (though I was pretty tired of it by the end.) :)

Michelle

Lisa Mentor

Please do not assume that your child has Celiac Disease. Your child could be perfectly fine with gluten and never have an issue. Twenty percent of first degree relatives MAY develop Celiac.

Amyleigh0007 Enthusiast

I am doing the same thing you are. My 21 month old daughter has never had gluten. We will do genetic testing sometime in the future but for now she is gluten free along with my son and me. Luckily my family and my husband's family respect our wishes to keep our daughter gluten free without knowing if she has Celiac. My son was very sick before his diagnosis. Everyone has seen what a miracle the gluten free diet has been for him. I think that's why they are so accepting.

In my opinion, if they can't follow your rules for your son then they should not be allowed to be alone with him. That may sound harsh but you have to think of your son first. You are the mom and you make the rules. If you don't want him to have gluten they should respect that.

jerseyangel Proficient
If you don't want him to have gluten they should respect that.

Yep--they don't have to agree or even understand, but they need to respect your wishes when it comes to your child. :)

Skeet Rookie
Please do not assume that your child has Celiac Disease. Your child could be perfectly fine with gluten and never have an issue. Twenty percent of first degree relatives MAY develop Celiac.

Sorry, I should have mentioned he develops mild eczema when I ingest gluten products, and SEVERE eczema whenever he's had gluten.

Also, in addition to DH having DH - I have auto-immune thyroiditis - which is possibly celiac related too. But, as mentioned I'm not sure I want to be diagnosed or have him diagnosed either. We've already had one insurance company out-right deny my DH coverage because of his DH!

lovegrov Collaborator

Eczema is one thing, but has nothing at all to do with celiac disease as far as I know. Perhaps he will have celiac disease, but that's pretty much impossible to tell without eating gluten. Genetic tests can tell you if you have the gene(s) but can't tell you whether you will develop it. Most people who have the gene don't have celiac disease.

richard


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

"We will do genetic testing sometime in the future but for now she is gluten free along with my son and me."

Just wanted to make sure that you know that while lack of the gene(s) means you almost certainly will not develop celiac disease, presence of the gene(s) does NOT mean you will. It's my understanding that the majority of people with the gene(s) never develop celiac disease, and nobody has any idea why some do and some don't. For that reason, I'm really not even sure what the use of genetic testing is. I am one of three siblings. We now know my father has celiac disease and I do. My brother and sister? No.

richard

taweavmo3 Enthusiast

A while back, we looked into private health insurance. My husband was thinking of taking a sales position with a small company that didn't provide benefits yet. All but one company refused to insure my daughter who's been diagnosed with Celiac, only Aetna agreed to cover her, but it was at a much higher cost. Needless to say, I don't think we can ever have private insurance, and I'll never seek a concrete diagnosis for my other children. If this was a disease that needed medication or further physician visits, it would be a different story. But so far, I have not seen much benefit to having a dx for my dd. Once she was dx'd, we had two follow up appts that were completely useless, and we were pretty much told we didn't need to check in again unless there was a problem. Schools can be tricky, but we now see a holistic pediatrician who will write a note for my other children who do not have biopsy proven Celiac, but at the very least, gluten intolerance.

Relatives are hard to convince.......and they may never get it honestly. But you are the mother, and they need to respect your decisions, period. Easier said than done, I know, lol. Not everyone will agree with you, but you just have to trust your instinct and do what you feel is right for your child's health.

Amyleigh0007 Enthusiast
"We will do genetic testing sometime in the future but for now she is gluten free along with my son and me."

Just wanted to make sure that you know that while lack of the gene(s) means you almost certainly will not develop celiac disease, presence of the gene(s) does NOT mean you will. It's my understanding that the majority of people with the gene(s) never develop celiac disease, and nobody has any idea why some do and some don't. For that reason, I'm really not even sure what the use of genetic testing is. I am one of three siblings. We now know my father has celiac disease and I do. My brother and sister? No.

richard

I realize some people do not see the benefit of genetic testing. However, I think it's important. If she does not carry the gene(s) then we can rest easy and we will know that her tummy ache is caused by a virus and not undiagnosed Celiac disease. If she does carry the gene(s) then we will be armed with the knowledge that someday she might develop Celiac and if she begins to exhibit symptoms we will know what to do. She will also be able to let her future husband/children know that she carries the gene(s). I want to be educated about my children's health and the more information I have the better parent I feel I can be. So that is why I think genetic testing can be useful.

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. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    2. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    3. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    5. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,232
    • Most Online (within 30 mins)
      7,748

    Linda1964
    Newest Member
    Linda1964
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
×
×
  • 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.