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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,553
    • Most Online (within 30 mins)
      7,748

    Irene Maresca
    Newest Member
    Irene Maresca
    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

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.