Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Skeet
Posted

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
Michi8
Posted
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
Lisa
Posted

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
Amyleigh0007
Posted

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
jerseyangel
Posted
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
Skeet
Posted
  • Author
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
lovegrov
Posted

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
lovegrov
Posted

"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
taweavmo3
Posted

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
Amyleigh0007
Posted
"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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,963
    • Most Online (within 30 mins)
      7,748
    Pat Martin
    Newest Member
    Pat Martin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Newly diagnosed, struggling

      By Wheatwacked · Posted

      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Multiple symptoms and mixed provider responses

      By Wheatwacked · Posted

      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      Help vetting HLA-DQ typing provider

      By cameo674 · Posted

      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      Worried about being isolated

      By Scott Adams · Posted

      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...