Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Non-Supportive Family?
0

6 posts in this topic

Hey everyone,

I wonder if you have had trouble getting family on board with a gluten free diet for your non-diagnosed little one?

My daughter is only 15 months, and they will not do testing until she is at least 4. However, as I have had success with a gluten free diet (Not biopsied celiac, but positive blood results - i'm certain of it) But, due to severe seborrhea, undigested food, distended abdomen, and fussiness, the doctor would like us to trial a gluten free diet with her.

I am meeting resistance though....DH doesn't really "GET" or believe in CC.....Doesn't understand why I want to pretty much overhaul the kitchen and get rid of anything that could be harboring gluten....Any suggestions? I really need him to GET it! I've pretty much gone ahead and gotten rid of everything, regardless of what he thinks, but I REALLY don't need this to be a continued problem between us. :( He also leaves gluten-y blood crumbs EVERYWHERE, when my 15 month old crawls, likely gets these on her hands, then eats with her hands. ARGH. Also, I know i'm going to get resistance from his extended family, and I NEED him on board to back me up. :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

Maybe he needs to talk to the doctor? As for his family, if they won't go along with the diet the doctor prescribed, they should not have any unsupervised time with the little one.

0

Share this post


Link to post
Share on other sites

I'm sorry your DH isn't being supportive. I think he should talk to the doctor but ALSO talk to someone with celiac. If he understood the pain and suffering his daugher may be going through, maybe that would help him understand. Our son has celiac but my husband and I don't. As parents, we have to put our wants aside sometimes and do what's best for our kids. (although I would really enjoy a REAL donut) I don't know you or your husband's names but I will add you to my prayers tonight. I pray you will be able to help her as a team...It's much easier that way :) I'm sure he'll catch on soon enough. I hope the diet works for your daughter.

p.s. Perhaps you could give him a small snack cupboard that he can keep his GLUTENY snacks in and only eat them when she is not around. then wash his hands and use a paperplate so he doesnt drop crumbs. It's a great compromise!!

0

Share this post


Link to post
Share on other sites

Hi Tamesis,

I don't have a child, but my DP acted like one when I went gluten-free. It's a big change for them, and takes time for them to get used to it. I think they go through grief from the loss of "it". They've had "it" there whole lives and all of a sudden we take it away.

I had a "Come to Jesus" talk with him a couple of times. He started getting it. But he was still Dennis the Menace.

We went from shared kitchen to gluten-free home to shared again. (Only because my sister felt sorry for him, and gave me a dorm sized refrigerator for him to keep in a spare room.)

Part of the "Come to Jesus" talk was about autoimmune diseases. I told him it was very likely for me to acquire another one if I didn't mind my p's and q's about this one. Then we discussed Lou Gehrig's Disease, MS, Lupus, Cancer, Leukomia, Diabetes and family history. I didn't feel like talking about that stuff, but wanted him on the same skate board.

I think that's when he became proactive and more protective. He's a big sports fan and historian and knows about Lou Gehrig. He stepped up to the plate after we talked about bad autoimmune diseases. He finally understood it could get really, really bad (even worse than the bad stuff we've been through). That was my partner's hot button, not sure it's your husband's. Since I was ready to whack him over the head with a cast iron skillet and be done with him, try to think about what's really important to your husband. It's probably you and your child's health, but he hasn't been able to get his brain beyond the gluten yet.

0

Share this post


Link to post
Share on other sites

Thanks so much everyone for the replies. :)

I had a breakdown this afternoon, and we had a heart to heart...He's going to try to be more understanding. He wasn't too understanding when I said we need a new high chair tray though! LOL (Ours is scratched, plastic, I'm concerned about gluteny bits sticking in there), but, we're going to compromise with just advancing her to a booster seat at the table. :) He said he wants my doctor to tell him that we need new bake ware, plastic ware, etc. I don't know how knowledgeable she is with gluten cc, so I'm hoping we don't get to that, and we can just be in a good place from her on in. I think he's scared, and just doesn't know how to talk about it. She's our first....I was OK with me being sick, heck, almost happy, because I've been looking for answers for so long. But my baby....that's causing me to breakdown on a daily basis!

0

Share this post


Link to post
Share on other sites




I think the concept of cross-contamination is the hardest to grasp. My husband even thought the word "contamination" was extreme and exaggerated . . .because it is not a "poison" or anything, it is wheat! Well, it is a poison to me and one of our children so he had to start thinking of it as such. Even the teachers at school thought we were being extreme because when we told them, it was like, "he just ate wheat last week and was fine . . . all of the sudden he can't even have a crumb left on the table?"

For my husband, I used the one thing that grosses him out the most . . . the cat litter box (he won't even go near it.) I told him to imagine that wheat/gluten was stinky cat litter. If I cleaned out the cat box with my hands and then made him a sandwich, wouldn't he want me to wash my hands first? Would he want to eat out of a scratched up plastic bowl if it had been filled with dirty cat litter - even after it was washed? NO. If I spilled cat litter on the counters, even a tiny bit, shouldn't it be carefully cleaned up before we prepare food on the counter? I explained how we had to replace anything scratched or porous (wooden spoons) and he finally got it.

Now he has a tray with edges that he uses whenever he makes a sandwich so all the crumbs are in one place. Other than sandwich bread and a few boxes of cereal, everything else in our kitchen is gluten free.

In a shared kitchen, be sure to have separate dish sponges, peanut butter/jelly/butter jars, etc.

I am confused by why your doctor won't test her to be sure. Why wait? And why start the gluten-free diet if you plan to test in the future? She will have to resume eating gluten (and the reaction is usually worse after being gluten free) for an extended time and even then, the results could be unclear. I would question your doctor a little more. It sounds like she has it (positive blood test). Either you doctor needs to diagnose her based on that, or do a biopsy and then diagnose her. It is hard enough to get everyone on board when there is an actual diagnosis. I can only imagine how tough it would be if it was just a "trial diet."

In the beginning, my husband's extended family didn't get it. They somehow thought I had come up with this wacky diet on my own and were convinced a little "treat" here and there wouldn't hurt him ("don't tell mommy"). Thankfully, they finally get it - continued exposure to gluten puts him (and me) at risk for some much more serious, sometimes irreversible conditions and it is just not worth it. Also, their incessant questioning of it just made him feel like he was different and missing out on something everyone else was enjoying. Now we focus on what he CAN have, not what he has to avoid. They've changed from "his mom won't let him have that" to "that is not safe for him to eat." Even just the wording sends a very different message.

Good luck to you.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined