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

New To Celiac


followerofmyheart

Recommended Posts

followerofmyheart Newbie

We just found out last week that one of my daughters has Celiac. I am attempting to convery the importance of a glurten free diet to my extended family.

For example, my sisters reaction to my daughter was " You can still have Chicken fried steak you just have to take the breading off." :blink:

My mother was offended when I asked the exact ingredients in the potato salad she is bringing to 4th of July.

Both of these women are educated, smart women. But, they are not getting it. I have provided information etc.

How do you deal with ignorant family/friends ?


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



Celiac.com Sponsor (A8-M):



way of life Newbie
We just found out last week that one of my daughters has Celiac. I am attempting to convery the importance of a glurten free diet to my extended family.

For example, my sisters reaction to my daughter was " You can still have Chicken fried steak you just have to take the breading off." :blink:

My mother was offended when I asked the exact ingredients in the potato salad she is bringing to 4th of July.

Both of these women are educated, smart women. But, they are not getting it. I have provided information etc.

How do you deal with ignorant family/friends ?

My husband was recently diagnosed and it took 17 years to get the correct diagnoses I have been reading, researching and we have gone to a nutritionist as well. What I would say to family members is there is a genetic aspect involved so they may have it and not know it. We recently had a family function and I had to read labels of the foods that were prepared to make sure it was safe for my husband to eat. Nobody seemed to mind and they were all very curious considering it is genetic so maybe you can try that avenue. People tend to think you just can't eat bread and that is not the case it is so much more than that. If you haven't done so yet try to see a nutritionist that specializes in Celiac Disease. Best of Luck to you and your family.

Serversymptoms Contributor
We just found out last week that one of my daughters has Celiac. I am attempting to convery the importance of a glurten free diet to my extended family.

For example, my sisters reaction to my daughter was " You can still have Chicken fried steak you just have to take the breading off." :blink:

My mother was offended when I asked the exact ingredients in the potato salad she is bringing to 4th of July.

Both of these women are educated, smart women. But, they are not getting it. I have provided information etc.

How do you deal with ignorant family/friends ?

I think you should make sure your daughter only eat basic foods, or only what you will serve.

___________

I self diangnosed myself as celiac, and with my family and doctors thinking I don't have a health problems my other possible health problems are being ignored. I suspect that I also may have a thyroid problem, when I mention it to my mom ( oh yeah, I'm 17 years old) or any of my siblings they just justify it for something else. It's really annoying now because I'm starting to feel my health is just being neglected by family and the local hospital. Each day my health countinue to go on as the way it is ( being ignored, not having thyroid test etc... which it is logical) I feel the need more to go to a university further and further..... Graduate of 2010.

foodiegurl Collaborator

it is so frustrating, and unless someone has close experience with celiac, people just don't understand it, as i didn;t before i found out i had it.

another thing to worry about at cookouts and bbqs is that while something may be gluten-free, you have to worry about people putting utensils in those dishes that have been in gluteny foods or using their fingers if they have been tainted. so just be careful.

have a fun holiday!

maile Newbie
another thing to worry about at cookouts and bbqs is that while something may be gluten-free, you have to worry about people putting utensils in those dishes that have been in gluteny foods or using their fingers if they have been tainted. so just be careful.

have a fun holiday!

include the grill in this list too, if it's not wiped off properly before grilling gluten free food there could be cross contamination

Jestgar Rising Star
How do you deal with ignorant family/friends ?

You can look them in the eye and say " I watched my beautiful, beautiful child be sick for x years and couldn't do anything to help her. Now that I know what was making her so sick, I am prepared to do anything to protect her. I realize that it's unfair that her illness should impact you, but when we are together as a family, it does. We can work together at finding solutions that we all can live with, but for right now I am trusting you to take care of my baby the way I am, by keeping all traces of gluten away from her and her food."

Takala Enthusiast

I think it's my personality, but I don't have too much trouble as I just bring my own food and refuse politely to eat anybody else's, and my spouse will sometimes chirp up with "it's a food allergy." Now he knows and I know that it's not quite the same, but if I have to scare people into thinking I might have something like a blatant allergic reaction, so be it.

If they are better listeners I just tell them I need to avoid gluten because I have a bad neurological reaction, and that word usually intimidates people, that and "ataxia."

Now, if somebody said to me the chicken fried steak comment, I would say, "yes, you are on the right track, no more "regular" breading, when I cook now I would use a gluten free rice flour mixture which has no wheat in it at all instead of regular flour, to make something like that. Did you know one can also make great gravy without any wheat? " That way I would be validating their attempt to be "helpful" and sort of clarifying the situation. I don't expect people to know this so it's up to me to help them understand. I might not actually use a rice flour in the mix, but again, people's eyes may glaze over if I use words like "amaranth" so it's the KISS rule. Keep It Short & Simple.

In general, mothers are just going to be more resistant to anything and if that was her typical reaction I would just make sure the child knows not to eat strange food even if it's coming from a relative. Most of my family has allergies to something, so this sort of sloppy defiance and mock annoyance coming from a family member would not go over well with anyone.

Besides they could get the potato salad correct, and then bring it in some sort of old tupperware, or worse yet somebody dips a contaminated spoon in it, and it's all over.

Perhaps offering a suggestion as to which mayonnaise product would be acceptable is a start, as it is pretty easy to make a gluten free potato salad. One of the most popular brands already has a gluten free tag on it, Best Foods Real Mayo, it doesn't have to be another crisis. :blink: (MIL joke.)

Your house, your rules, you can ban gluten if you want or set down rules that need to be followed.


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



Celiac.com Sponsor (A8-M):



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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.