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

Non-Supportive Family?


Tamesis

Recommended Posts

Tamesis Rookie

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. :(


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

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.

GFSAHmom Rookie

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!!

Marilyn R Community Regular

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.

Tamesis Rookie

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!

Cara in Boston Enthusiast

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.

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. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    2. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

    4. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,098
    • Most Online (within 30 mins)
      7,748

    BothySmithy
    Newest Member
    BothySmithy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.