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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,680
    • Most Online (within 30 mins)
      7,748

    ashley94261
    Newest Member
    ashley94261
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.