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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

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

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    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

    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
×
×
  • 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.