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

Do You Correct Friends & Family...


JennyC

Recommended Posts

JennyC Enthusiast

I'm just curious whether others speak up when someone in their social circle calls celiac disease an allergy. I can see letting it slide if it was an acquaintance, but I'm wondering if I should have said something when my son's grandmother called my son's condition an allergy. I want to educate people, especially close friends and family, about the disease but my son's father's family does not seem too interested in learning. They put no forethought into their plans when they invite us over. They don't even to think about him enough to get chips he can eat. (How hard is that?) They have no idea about cross contamination. They just don't think, period. That is the way they are, as it has never been a problem for them. So would you correct your MIL?


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I wouldn't bother. Besides, if she thinks he has a wheat allergy, she might even be more careful than thinking it's celiac since wheat allergies have immediate reactions that can cause death!

People just don't care to know the details. If they're interested, they'll ask.

Just be sure you always bring food for him.

Aligray Apprentice

Honestly, I don't correct people. I have found that they respond better when i say allergy. I only say intolerance and go into details with friends and family and anyone interested.

Aligray Apprentice

One more thing,

I don't think it is that important to correct her/them. The most important thing is that they understand WHY there is such a need to not cross contaminate. I would concentrate on teaching them about what needs to be done and if they are just not going to do it then bring snacks and food with you for your son. This is a pain, i do realize, but you cant change people and your son is the priority here. My mother was very resistant at first but she eventually came around as she was able to see that I wasn't sick anymore and was feeling so much better. She now is EXTREMELY careful in the kitchen. So wiping out the ignorance is key here BUT start with the basics like what can/can't he eat, and why, and then about CC.

Good luck!

-Ali :)

gfpaperdoll Rookie

I do not correct people, basically most people do not really care what you are eating, including your family. As long as they can continue to eat what they want & remain ignorant, it seems to keep them happy. Of course I have had a life long battle with "food Allergies" so I would take my own food long before I knew anything about gluten...

blueeyedmanda Community Regular

I do not correct people. I figure if they think it is an allergy they take it more seriously. It is less stressful than having to explain it to them over and over again.

Guest j_mommy

With family I say " It's different from an allergy but you treat it like one". People I don't know well that ask, I don't correct them unless they really are interested in hearing about it!


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



Celiac.com Sponsor (A8-M):



EBsMom Apprentice

I think I'm the lone dissenter. I do correct people, if they're people I care enough about to feel that they really need to understand. I've had a couple of friends call it an "allergy." My response was "It's not an allergy. It's an autoimmune disease, and if it's not treated it can lead to diabetes, rheumatoid arthritis, thyroid dysfunction, anemia, osteoporosis and cancer." I guess I'm hoping to scare them into understanding, lol! But for people that don't really need to know....or obviously don't care to know....I don't correct them.

Maybe you could buy Dr. Peter Green's book on celiac disease and give it to them (beautifully wrapped) as a holiday gift! Let Dr. Green correct them! :-)

Rho

jerseyangel Proficient

I correct people. The amount of detail I go into depends on the person and the situation.

I just can't bring myself to agree with someone who refers to this as an allergy. :ph34r:

JennyC Enthusiast

I would not correct most people, but I figure his family should want to understand. :rolleyes: So, how do you guys tackle cross contamination with family? I usually make sure that the food itself is gluten free and hope for the best. My son is a picky eater, and I definitely don't push him to eat at other people's homes. I can be more direct with my family, but not my boyfriend's. It's ridiculous. My son's health is the priority. So what questions do you ask the cooks about their food preparation?

gfpaperdoll Rookie

Take Your OWN Food, I would not eat fruit that someone cut up on their chopping board...

AND, I would not waste my time asking questions, because they are not going to get it & really they do not care...

cyberprof Enthusiast

I am really lucky. My MIL, who can be a pain, was so sweet and actually ordered the GIG product binder for me as a gift. My mother got my son a gluten-free cookbook for kids.

My MIL is a good cook, so I like eating her food. But after I was off gluten for a few months, I started getting sick from hidden gluten -- in tupperware, CC, you all know what I mean.

So I started educating. I gave my MIL a couple packages of Pamela's and Bob's Red Mill baking mixes, which MIL now uses. She bought the soy sauce I use and she bought the squeeze bottles of mayo and mustard so she won't cook with something that has had a dirty knife in it. Really, I am so lucky.

But it's really hard to cook gluten-free in a gluten-containing kitchen, so in your case, JennyC (OP), I think there's no way to trust their food, unless you know it's a newly-opened, uncontaminated package of X from Kraft or Oscar Meyer or Doritos that you know for sure is gluten free. Good luck!

I would not correct most people, but I figure his family should want to understand. :rolleyes: So, how do you guys tackle cross contamination with family? I usually make sure that the food itself is gluten free and hope for the best. My son is a picky eater, and I definitely don't push him to eat at other people's homes. I can be more direct with my family, but not my boyfriend's. It's ridiculous. My son's health is the priority. So what questions do you ask the cooks about their food preparation?
tarnalberry Community Regular

I correct people, because it seems silly to me to leave people in ignorance. Unless it's a detailed discussion, I usually say, "It's not an allergy, but an autoimmune reaction in the gut. But you can deal with the diet kinda like an allergy." This is to convey that it's similar to an allergy in seriousness and that there is an immune response, but also convey that it's *auto*immune.

kbtoyssni Contributor

I typically don't correct them unless they ask for more information. The treatment is the same and very few people know about the difference between IgA, IgE and other reactions. I never knew there were reactions other than allergies before I got celiac, either. I don't find it very important to tell people the scientific details of what happens to my body. Issues like CC I feel are much more important to mention, and if you're only got time to tell them about one issue, I'd rather talk about CC.

Tim-n-VA Contributor

I don't see this as any different that any other correction you have the opportunity to make in a conversation. If someone mispronounces a word or uses poor grammar or gets a detail wrong, you have to make a judgement as to whether the error is important enough to the discussion to be worth the halt in the conversational flow. There are lots of factors that influence that decision. While there are people who korrect everything, I usually try to avoid them.

I sometimes use the word allergy myself when I think that will get the key point (I can't eat gluten) better than the more technically accurate but perhaps misunderstood autoimmune explanation.

stef-the-kicking-cuty Enthusiast

It depends on who it is I am talking to. With people, that I'm very close to like friends, family and students, I usually always correct them. If it is a stranger I will definitely correct them, when they approach me with that "Did you know, you could do 'x' to heal your allergy?" In that case I will definitely educate them, that what I have is no allergy and you can't cure it. Other than that it depends on the subject...

mamaw Community Regular

I do correct people but I don't dwell on it. I just say that an allergy is totalally different than celiac disease. Is they ask more ??'s then I go into detail but I've found family to be the least who ask ???'s as they think it may involve them in to having to do something special.... I have friends who are more involved than family.... The kids friends parents have our kids for sleepovers & they either ask or buy a gluten-free breakfast food or they have us bring it with them. Now the in-laws will not even buy a decent bag of chips for the kids so when they go there , they never stay long as there are no goodies for them to snack on....I have mentioned that the kids can have this or that product but they say oh we don't like that stuff..... I just want to hit them up along side the head....... as if it would hurt them to buy a $.99 bag of chips!!!!

I think by far family has to be the worse.....

mamaw

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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748

    Rusty49
    Newest Member
    Rusty49
    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

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.