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

Help With Grandparents

MominSoCal

By MominSoCal
in Coping with Celiac Disease

Recommended Posts

MominSoCal Apprentice
MominSoCal
Posted

Hi all-

My 7 yo daughter tested (+) and is awaiting her endoscopy for confirmation.  We (5 of us) share a home with my parents.  I have discussed with my mom about the changes that we will need to take place to keep the home gluten-free.  This news is not popular and she is worried about my dad, since he is older and "likes what he likes"

 

So if anyone can post links to articles or posts on:

1-keeping a kitchen gluten-free  - cross-contamination

2 - Why being 100% gluten-free is so important (they seem to think "a little" is ok)

3 - health consequences of not maintaining gluten-free.  

 

I am already worried, since he brings home donuts every Saturday and takes them out to fast food places several times a month.  they are also my kids caretakers 3 days/week, so I need to really get them to understand this.

 

Thanks

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

First, I don't think the whole house has to be gluten-free. There are ways to have some gluten food in the home and keep things safe. But that assumes that everyone wants and is able to follow the procedures.

There is lots of info at Open Original Shared Link. And there are other national organizations a and celiac medical centers with info. Because celiac is genetic! your other kids or you may test positive! too.

If this is their home, it is up to them what rules they want in their house. In your home, you can make the rules. You definitively make the rules in what your children can eat, even when a grandparent is babysitting. If you think they will not be able to keep your child safe, you may have to make other living or babysitting arrangements. You are the parent, so that is your responsibility. Sometimes, just mentioning that is enough to get them to cooperate.

Adalaide Mentor
Adalaide
Posted

It really will be up to them whether or not they want the entire house to be gluten free. That said, there really can not be debate about whether or not your daughter is 100% gluten free. They need to understand that it isn't an upset tummy or a little C or D, it is actual physical harm if she has any.

 

The outings will simply need to be changed to places that are safe for your daughter to eat. If you live where there is an In N Out, it is by far (imo) the single safest place to get a meal. Order a burger with no bun, tell them it is for an allergy and you're set. The burger will come lettuce wrapped, they never use the fryer for anything but fries and the drinks and shakes are safe. If you don't have one near you, you'll have to research what is safe or he'll have to find something else to do with them.

 

Unless you are making your entire family gluten free, I don't see the problem with the donuts... if he is considerate. He needs to think about the fact that it isn't fair to bring home donuts for everyone else and leave a single child out. He should make sure he can find a gluten free treat for her also. Maybe that means buying a box of frozen gluten free donuts. Maybe it means going to a local gluten free bakery and getting her a cupcake. At any rate, if it is a ritual everyone enjoys it can be modified without taking it away from everyone.

 

Remember, you're asking for a big change from your parents. You live in their house. While they do need to be considerate of the health of their grandchildren, they don't need to entirely turn their lives upside down. This is going to be difficult for them, even just learning to live with gluten free people in the house. Asking them to outright give up what are rituals for them with their grandchildren will be emotionally difficult for them, possibly as much as it is difficult for you and your daughter to get this diagnosis. (And I'm not just preaching off a soapbox here... I live with my MIL and did at the time of my diagnosis so I'm somewhat familiar with how difficult this can be for everyone involved. Even when it isn't the person who has to "deal with" the issue.)

MominSoCal Apprentice
MominSoCal
Posted
  • Author

I appreciate the feedback. I am feeling that education is the best approach, hence why I am looking for published material.

We share a home, they love their grandkids. If you have any other specific articles, they would be appreciated.

shadowicewolf Proficient
shadowicewolf
Posted

This site should help you a lot Open Original Shared Link

 

The university of chicago has a wealth of information on this.

Adalaide Mentor
Adalaide
Posted

University of Chicago is my favorite place to get information. You can get answers to very specific questions that someone has almost certainly answered before. They also have a pamphlet type thing you can print out. Spending some time getting around their site should net you a lot of information to share.

Archived

This topic is now archived and is closed to further replies.

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


  • Member Statistics

    • Total Members
      129,966
    • Most Online (within 30 mins)
      7,748
    Susan Allsopp
    Newest Member
    Susan Allsopp
    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...