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Non-Supportive Family?


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#1 Tamesis

 
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Posted 01 March 2012 - 03:17 PM

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. :(
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#2 kareng

 
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Posted 01 March 2012 - 03:36 PM

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.
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#3 GFSAHmom

 
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Posted 01 March 2012 - 05:52 PM

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!!
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2yr old son with Celiac (Diagnosed january 6 2012)
Blood work was >139 (normal <20)
Symptoms: Weightloss, tired, chronic constipation, white stool, NO appetite, failure to THRIVE.
Problems started 1 week before his 2nd Birthday when he first got sick with CROUP.
He is now on GLUTEN FREE diet and gaining weight, has energy, no constipation and THRIVING!

#4 Marilyn R

 
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Posted 01 March 2012 - 06:08 PM

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.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#5 Tamesis

 
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Posted 02 March 2012 - 12:31 AM

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!
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#6 Cara in Boston

 
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Posted 02 March 2012 - 07:42 AM

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.
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