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

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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,368
    • Most Online (within 30 mins)
      7,748

    Jdhunt
    Newest Member
    Jdhunt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...