Should I start saying I’m celiac?

[Ann.without.an.e]

I’ve never been tested for celiac but I’ve been gluten free for at least 12 years. I don’t eat out often but when I do I’m careful because gluten makes me sick. I know a lot of people who are gluten free here and there (until something is tempting and they cave). This is not my lifestyle, I’m 100% gluten free all the time unless it is an accident on someone else’s part. I’ve noticed a few places will now ask “are you celiac, allergic, or just a choice?” I’ll usually just say “intolerant” and for some reason that is interpreted as “a choice”.  About 3 weeks ago I went out with DD and we ordered fries and answered the question with intolerant and I guess they interpreted that as “no need to use the dedicated fryer”.  I was only halfway through my meal when my stomach started cramping and I realized what had happened when we got to the bottom of the basket and there were all sorts of chicken tender breading bits. I rarely get contaminated but I have almost debilitating joint pain for 2-3 weeks afterward when I do. 
I hate to lie or somehow upset those who have diagnosed celiac disease. But in this circumstance can I just say I’m allergic or celiac? A friend says I cannot, that it would be wrong. What does the hive think? 
 

ETA - to answer the question that I know will be asked - I should have been tested before I went GF but I didn’t know that and I’m not going to eat gluten for two weeks in order to be tested.

Edited October 25, 2022 by Ann.without.an.e

[Grace Hopper]

For dining out purposes, I think it’s fine to tell them you need celiac-level gf food prep. 
 

[Jean in Newcastle]

Your symptoms fit with "non-celiac gluten intolerance" at the very least.  I would just say "celiac".  They are not actually asking for your medical diagnosis.  They are asking about how careful they need to be to avoid those cramps etc. 

[KatieJ]

Hmm..I understand your dilemma. My son is in the same place. He says it’s just easier snd safer to say I am celiac. 

[Arcadia]

I think people associate intolerant with sensitive which somehow becomes mild contamination is okay. I would say allergic. My husband was allergic to shrimps but now can take one or two. It is still safer to say allergic than risk it when dining. My in-laws are the kind who thinks food allergies are nothing unless someone lands in ER so intolerant is something that they would not comprehend.

[Katy]

For the purposes you mean, say Celiac. But you can also just get the genetic test. If you have the genes and have symptoms you don’t need the biopsy anymore. At least according to Dr Will B….. I can’t remember his long last name (Buscuwich maybe?) but he wrote The Fiber Fueled books and he’s a gastroenterologist or some subspecialty of that I think. 

[Indigo Blue]

Ann, I’m in the exact same situation. I don’t get sick or get cramps. I get those horrible ulcers in my mouth, and they are most definitely caused by gluten. I’m not even sure what my intolerance level is or if I need to be tested. Like you, I don’t want to be tested because I don’t want to eat gluten to find out. I just stay gluten free as a celiac would, and I have no problems. 

[vonfirmath]

15 minutes ago, Arcadia said:

I think people associate intolerant with sensitive which somehow becomes mild contamination is okay. I would say allergic. My husband was allergic to shrimps but now can take one or two. It is still safer to say allergic than risk it when dining. My in-laws are the kind who thinks food allergies are nothing unless someone lands in ER so intolerant is something that they would not comprehend.

Yes my daughter is intolerant to dairy (which does mean sometimes mild contamination is ok. -- but breading at the bottom is not what I would consider MILD contamination!) (Baked in dairy does not seem to affect her at all -- so in things like cake, bread, etc) We do say dairy allergic at restaurants. If they accidentally put cheese on her burger, we want a new burger NOT for them to peel the cheese off and deliver the rest of the burger!

 

Edited October 25, 2022 by vonfirmath

[Indigo Blue]

As far as eating out, I just try to stay with the places that do a better job, like Chic Fil A. IHOP has gf pancakes, but they make them right on the griddle with gluten pancakes. Honestly, I just rarely eat out. It’s just easier. The knowledge level and protocol is so different from place to place. 
 

I have been asked before: celiac, sensitivity, allergy, or intolerance? Knowledgeable person trying to be careful, but I, too, am kinda not sure how to answer that. My answer may end up getting me glutened. 🤷‍♀️

[Spryte]

I would just say “celiac” because it conveys the level of caution needed in your food prep. Alternatively, you could simply say that you cannot be exposed to even trace amounts (if that’s true).

You might check online before heading to restaurants, some places are much more celiac knowledgeable than others, and there are some good resources for recommendations.

There are very few restaurants that work for me, personally. I’ve been glutened way too many times! Ouch, misery.

[Danae]

If you don’t want to just say celiac how about “It is similar to celiac.  Even a tiny amount will make me very sick.” 

[Scarlett]

I would definitely say you are celiac.  But I agree with getting the genetic test just to have that.

This reminds me of how some in the medical field correct me when I say I am allergic to narcotics and opioids.  Apparently to them I am not allergic since I don’t have an anaphylactic reaction…..I am like ok, well I have violent projectile vomiting and diarrhea so call it what you want but don’t give it to me. , 

[Melissa Louise]

I mean, no?

Because you don't know you are celiac.

I don't understand the question.

Go get tested. Yes, you will need to gluten yourself.

Oh well. It will end, and then you will know if you have celiac, which is a medical condition, or not.

[Melissa Louise]

But if you are going to self-diagnose, then start doing celiac level research when you go out to eat.

Very few places actually truly understand celiac.

I mean, my actually diagnosed son doesn't eat out...that's how serious his medical condition is.

[Kassia]

I would just say you are in the hope that they would be more careful and you avoid unnecessary physical pain/upset.  Just seems the easiest way to get the point across that you can't tolerate gluten.

[KungFuPanda]

You KNOW gluten makes you sick. You say what you need to to get the wait staff to feed you safely. Ignore the advice of black and white thinkers. I get the appeal, but it’s a lazy and overly simple way to navigate life. 

I don’t have experience with celiac so I’m not clear WHY you would need to get the test. You know what makes you sick and you avoid it. How’s a formal diagnosis going to improve your health? 

[teachermom2834]

My friend who has celiac gets mad that people say they have it but then eat gluten or accept fries made in the common fryer or whatever is actually not okay. That makes her life as a celiac harder. But you are being a good celiac whether you are official or not. So I think you can say you are celiac and behave as a celiac and do no harm to the celiac community. You just can’t say you are a celiac and then cave and eat a breadstick or something because that makes people not take celiacs seriously. 
 

Or you can just clarify that you can’t have any gluten at all and act dead serious about it and perhaps that will get your point across? 

[73349]

"I need it celiac-safe" conveys accurately the level of attention they need to pay to not glutening you without making a not-technically-confirmed claim, if you prefer.

Edited October 25, 2022 by 73349

[ktgrok]

4 hours ago, Indigo Blue said:

Ann, I’m in the exact same situation. I don’t get sick or get cramps. I get those horrible ulcers in my mouth, and they are most definitely caused by gluten. I’m not even sure what my intolerance level is or if I need to be tested. Like you, I don’t want to be tested because I don’t want to eat gluten to find out. I just stay gluten free as a celiac would, and I have no problems. 

If you get the ulcers again you may be able to get them biopsied and get a diagnosis that way. At least, I know that the typical rash that goes with celiac disease can be biopsied, and they can diagnose based on that. 

[heartlikealion]

I can't understand why "intolerant" wasn't enough for them to be careful??? So my takeaway wouldn't be necessarily to lie so much as not dine there. 

[cintinative]

I have a Celiac kid, and I might make myself unpopular by this, but here goes (I have a passion about this from years of advocating for my son):

Don't say you are Celiac. You don't know that you are, and as noted by teachermom2834, if you decide to "cheat" now and then in restaurants, you diminish what Celiac means to others.  

Don't say you have an allergy.  A true allergy *could* cause anaphlacsis (it doesn't in all cases, of course, as there is a spectrum of immune response. ) I am thinking of the many moms on the food allergy college board that are literally scared out of their wits because their kids' college is not taking the food allergy seriously.  

It's okay to say I need Celiac level preparation and leave it at that. (ETA: if you truly can't verbally say that you need this, for example, if it is an online order, I don't think it is bad to say you are Celiac in this case). 

I have a friend who is "gluten intolerant" and told us about this restaurant being safe. It was fine for her--it caused my son to be sick for a week.  It's just not the same.  

As a side note, there is a higher risk of cancer and other problems if you have Celiac. It really makes sense to get tested. 

This is a spin-off but I have noticed a huge trend of people going gluten free without testing first and I just don't get it. Even the best level of prevention doesn't mean we never get glutened accidentally.  People accidentally use a cosmetic with gluten without knowing it.  If a person has Celiac, it makes sense to monitor his/her body's immune response periodically (my son is monitored annually) to see how the body is doing and to put us on alert for hidden sources of gluten. Because, again, cancer risk and all that.

ETA: I was super grumpy when I wrote this because of another issue, and since it has been quoted multiple times there is really no way to fix the tone now.  But anyway, I apologize for it being so grumpy. 

Edited October 26, 2022 by cintinative

[heartlikealion]

1 minute ago, cintinative said:

I have a Celiac kid, and I might make myself unpopular by this, but here goes (I have a passion about this from years of advocating for my son):

The labeling should be not based on what is easiest for you but what is best for the continued welfare of others with diagnoses. 

Don't say you are Celiac. You don't know that you are, and as noted by teachermom2834, if you decide to "cheat" now and then in restaurants, you diminish what Celiac means to others.  

Don't say you have an allergy.  A true allergy would potentially cause anaphylacsis. (sp?).  Again, if they accidentally give you some wheat, you will not have that type of reaction, and they may think that it is okay to give others wheat because you were okay. 
 

It's okay to say I need Celiac level preparation and leave it at that.

I have a friend who is "gluten intolerant" and told us about this restaurant being safe. It was fine for her--it caused my son to be sick for a week.  It's just not the same.  

As a side note, there is a higher risk of cancer and other problems if you have Celiac. It really makes sense to get tested. 

This is a spin-off but I have noticed a huge trend of people going gluten free without testing first and I just don't get it. Even the best level of prevention doesn't mean we never get glutened accidentally.  People accidentally use a cosmetic with gluten without knowing it.  If a person has Celiac, it makes sense to monitor his/her body's immune response periodically (my son is monitored annually) to see how the body is doing and to put us on alert for hidden sources of gluten. Because, again, cancer risk and all that.

False. Not all allergies cause this level of reaction. But you can have an allergy, anyway. 

[cintinative]

44 minutes ago, heartlikealion said:

False. Not all allergies cause this level of reaction. But you can have an allergy, anyway. 

Revised language in my OP to address this.

Edited October 25, 2022 by cintinative

[mathnerd]

12 minutes ago, cintinative said:

Don't say you have an allergy.  A true allergy would potentially cause anaphylacsis. (sp?). 

Not true. My family member has stomach cramps and pains and is curled over in pain for 3-4 days until things correct themselves. Not everyone with an allergy needs to go into anaphylactic response.

[heartlikealion]

Just now, cintinative said:

hence the language "would potentially cause"

If someone with Celiac eats wheat, they don't stop breathing. If someone with a serious wheat allergy eats wheat, they might. My point is, we don't want to belittle the food allergy folks' challenges.

I have food allergies. Some can cause anaphylacsis and some don't. I still don't think that someone who doesn't have an allergy should say that they do.

Sorry, I must have misunderstood. I thought in general (not just referring to celiac) you were saying people can't refer to less severe allergies as allergies. People in my family have allergies but not what we consider life threatening. I wouldn't omit the word "allergy" from their vocabulary based on severity. I can understand if you're saying don't use the word allergy with celiac as it's apparently not synonymous with allergy. I had to google it to see if there was an overlap with the terms (I honestly didn't know). 

[Clarita]

1 hour ago, KungFuPanda said:

I don’t have experience with celiac so I’m not clear WHY you would need to get the test. You know what makes you sick and you avoid it. How’s a formal diagnosis going to improve your health? 

A formal diagnosis can improve your health/life. Depending on how bad it got before you diagnosed or started being aware of it your intestine can be in a bad state. At that point other foods also begin to cause issues not just gluten ones. In that case you can actually work to gain foods back into your diet by healing your intestines. Also you can get drugs that help you deal with small doses of gluten (in case you are the type that can't even be in a room where someone is eating bread, or minor contamination causes you illness) so can visit restaurants again or even be in one.   

 

[heartlikealion]

6 minutes ago, mathnerd said:

Not true. My family member has stomach cramps and pains and is curled over in pain for 3-4 days until things correct themselves. Not everyone with an allergy needs to go into anaphylactic response.

Yes, that was the point I was trying to make. 
I don't know how to refer to my own issues so I just say, "lactose sensitive" as I know some dairy will mess me up badly. That's not technically an allergy, either. Others in my family have allergies, but not what are known to be life threatening. Ds had a back panel done and they said it was the worst they'd seen in years. He's allergic to all kinds of stuff. 

[cintinative]

26 minutes ago, mathnerd said:

Not true. My family member has stomach cramps and pains and is curled over in pain for 3-4 days until things correct themselves. Not everyone with an allergy needs to go into anaphylactic response.

 

 

18 minutes ago, heartlikealion said:

Yes, that was the point I was trying to make. 
I don't know how to refer to my own issues so I just say, "lactose sensitive" as I know some dairy will mess me up badly. That's not technically an allergy, either. Others in my family have allergies, but not what are known to be life threatening. Ds had a back panel done and they said it was the worst they'd seen in years. He's allergic to all kinds of stuff. 

Sorry, I didn't clarify it well and I also am very frustrated with dh right now, so that's probably contributing to a bad tone.  I will try to fix the post to clarify.  I do understand there is a spectrum.  In my corrected post I referred to the food allergy college moms group I follow. So many moms are so scared for their kids because the college is not taking their children's allergy seriously.  A few have already had kids in the ER this year because of exposure.  =(  Sorry for being grumpy.

Edited October 25, 2022 by cintinative

[katilac]

6 hours ago, Scarlett said:

This reminds me of how some in the medical field correct me when I say I am allergic to narcotics and opioids.  Apparently to them I am not allergic since I don’t have an anaphylactic reaction…..I am like ok, well I have violent projectile vomiting and diarrhea so call it what you want but don’t give it to me. , 

This is me with Augmentin (antibiotic). They didn't reference an anaphylactic reaction being needed, but just said that's not an allergy. But the problem is that there is a "which medications are you allergic to?" question on the forms, but there is not a "which medications cause projectile vomiting?" question. They might make a note, but it's not followed like that allergy checkmark is, that's for sure. 

3 hours ago, cintinative said:

I have a Celiac kid, and I might make myself unpopular by this, but here goes (I have a passion about this from years of advocating for my son):

The labeling should be not based on what is easiest for you but what is best for the continued welfare of others with diagnoses. 

Don't say you are Celiac. You don't know that you are, and as noted by teachermom2834, if you decide to "cheat" now and then in restaurants, you diminish what Celiac means to others.  

Don't say you have an allergy.  A true allergy *could* cause anaphlacsis (it doesn't in all cases, of course, as there is a spectrum of immune response. ) I am thinking of the many moms on the food allergy college board that are literally scared out of their wits because their kids' college is not taking the food allergy seriously.  

It's okay to say I need Celiac level preparation and leave it at that.

I have a friend who is "gluten intolerant" and told us about this restaurant being safe. It was fine for her--it caused my son to be sick for a week.  It's just not the same.  

As a side note, there is a higher risk of cancer and other problems if you have Celiac. It really makes sense to get tested. 

This is a spin-off but I have noticed a huge trend of people going gluten free without testing first and I just don't get it. Even the best level of prevention doesn't mean we never get glutened accidentally.  People accidentally use a cosmetic with gluten without knowing it.  If a person has Celiac, it makes sense to monitor his/her body's immune response periodically (my son is monitored annually) to see how the body is doing and to put us on alert for hidden sources of gluten. Because, again, cancer risk and all that.

"if you decide to "cheat" now and then in restaurants" To be fair, OP was very clear that she is 100% gluten free.

"It's okay to say I need Celiac level preparation" She is being asked to pick from three specific choices at some restaurants, and celiac-level preparation is not one of them. If you're somewhere where you can say that up front and have it accepted, that's a great option, but I'm guessing that restaurants that present those choices are just ticking A, B, or C. If you don't say celiac, there's a high likelihood you won't get celiac-level preparation. 

Taking a friend's recommendation for a restaurant is pretty unrelated, imo. You're saying intolerant is not the same as celiac, and I agree. But if that's so, and you know she's gluten-intolerant level, why would it mean anything to your son with celiac that she was fine eating there? Plus of course symptoms and responses vary. Two people can each have verified celiac disease, and they could have completely different reactions to eating the exact same meal, including no outward reaction at all. 

If I truly needed celiac-level preparation, I would not hesitate to say celiac. I agree that it's ideal to have the test, but I can also see why someone doesn't want to go through weeks of pain and misery to get it when they know what works. And, of course, sometimes you're at a point of life that just doesn't allow for that. 

[Jean in Newcastle]

Technically I can only say that I have been diagnosed with “non celiac gluten intolerance “. But that ignores the fact that I was already off gluten when I was tested. It also ignores the fact that my daughter has biopsy diagnosed celiac (and there can be a genetic component). It also ignores the fact that I get sick for WEEKS when I’m glutened.
 

So I am extremely offended at someone telling me that I can’t protect my health because I might “ruin things for ‘real’ celiacs “. You bet your sweet bippy that I tell people that I have celiac. It’s none of their business to question my “celiac credentials  “. And I am doing it for the same reason that a regularly diagnosed celiac person would - to keep myself safe.  I get no weird kicks from making my life so much more difficult by avoiding every speck of gluten. 

[Clarita]

5 hours ago, katilac said:

This is me with Augmentin (antibiotic). They didn't reference an anaphylactic reaction being needed, but just said that's not an allergy. But the problem is that there is a "which medications are you allergic to?" question on the forms, but there is not a "which medications cause projectile vomiting?" question. They might make a note, but it's not followed like that allergy checkmark is, that's for sure. 

I asked my OBGYN what to put down because Vicodin makes me suicidal. She said just put you are allergic. So I'm blaming her if someone complains.

[Jenny in Florida]

16 hours ago, 73349 said:

"I need it celiac-safe" conveys accurately the level of attention they need to pay to not glutening you without making a not-technically-confirmed claim, if you prefer.

So, the problem with this approach is that I think a lot of restaurants essentially have a box to check for the options they quote. There's no box for, "Well, I'm not diagnosed celiac but if you gluten me I will be in debilitating pain for a week or two." It's a multiple-choice question, not a fill-in-the-blank.

For the record, I have a similar problem. I have not been diagnosed with anything specific, but after more than two years of pain and cramping and digestive unpleasantness that made it difficult for me to do anything (including work) that kept me away from a bathroom, I quit eating gluten and discovered it made a world of difference. I have spoken to my doctors about it, all of whom encouraged me to stick with what's working. I have some other autoimmune issues (including both Graves and Hashimoto's), so it makes some sense that I would have this kind of intolerance, too.

When faced with the "celiac, allergy, intolerance or preference" question, I usually hedge a bit but go with the middle ground of "like an allergy." 

I hate saying it, because it does feel disrespectful to people who have life-threatening allergies, but it's the best compromise I've found that allows me to function in the world.

[73349]

The restaurant staff are really asking for information about what they should do, not for the customer's diagnosis. If you need it celiac-safe--regardless of whether you have a diagnosis--you might as well say so, because it's what they need to know.

That said, I very, very rarely trust a mixed-kitchen restaurant, so it's not a frequent question either for my celiac child or for me (likely celiac).

I can't speak for others, but I didn't get tested because my doctor turned me down when DS was diagnosed: the US standard at the time was not to test 1st-degree relatives unless they had symptoms, and I didn't realize I was having symptoms because they'd been my normal for decades. Now the standard has changed, but I am definitely not bringing wheat in my house & risking glutening DS (and bringing back my symptoms) for a month before a blood test and then continuing until I could get a biopsy scheduled, possibly several more weeks. I might as well just eat like DS, which includes assuming all restaurants are unable to serve us unless we have confirmation that they're 100% gf or we have multiple symptomatic celiac witnesses affirming they've eaten there multiple times without a reaction. That means we eat out about once a month and often drive to another town for it.

Edited October 26, 2022 by 73349

[Jean in Newcastle]

1 hour ago, 73349 said:

The restaurant staff are really asking for information about what they should do, not for the customer's diagnosis. If you need it celiac-safe--regardless of whether you have a diagnosis--you might as well say so, because it's what they need to know.

That said, I very, very rarely trust a mixed-kitchen restaurant, so it's not a frequent question either for my celiac child or for me (likely celiac).

I can't speak for others, but I didn't get tested because my doctor turned me down when DS was diagnosed: the US standard at the time was not to test 1st-degree relatives unless they had symptoms, and I didn't realize I was having symptoms because they'd been my normal for decades. Now the standard has changed, but I am definitely not bringing wheat in my house & risking glutening DS (and bringing back my symptoms) for a month before a blood test and then continuing until I could get a biopsy scheduled, possibly several more weeks. I might as well just eat like DS, which includes assuming all restaurants are unable to serve us unless we have confirmation that they're 100% gf or we have multiple symptomatic celiac witnesses affirming they've eaten there multiple times without a reaction. That means we eat out about once a month and often drive to another town for it.

I use a “crowd sourced” app called Find Me Gluten Free” to find safe restaurants. Of course dedicated gluten free restaurants are best but some other places have been ok for me. (I don’t know if that if it’s nationwide but I have used it in more than one state.). 

[Harriet Vane]

1 hour ago, 73349 said:

The restaurant staff are really asking for information about what they should do, not for the customer's diagnosis. If you need it celiac-safe--regardless of whether you have a diagnosis--you might as well say so, because it's what they need to know.

That said, I very, very rarely trust a mixed-kitchen restaurant, so it's not a frequent question either for my celiac child or for me (likely celiac).

I can't speak for others, but I didn't get tested because my doctor turned me down when DS was diagnosed: the US standard at the time was not to test 1st-degree relatives unless they had symptoms, and I didn't realize I was having symptoms because they'd been my normal for decades. Now the standard has changed, but I am definitely not bringing wheat in my house & risking glutening DS (and bringing back my symptoms) for a month before a blood test and then continuing until I could get a biopsy scheduled, possibly several more weeks. I might as well just eat like DS, which includes assuming all restaurants are unable to serve us unless we have confirmation that they're 100% gf or we have multiple symptomatic celiac witnesses affirming they've eaten there multiple times without a reaction. That means we eat out about once a month and often drive to another town for it.

Similar here, with some different nuances. I didn't get tested because I didn't have the same awful symptoms as my sister (who has celiac). The blood tests show that I do not have celiac, but those blood tests are notoriously unreliable (which is why a biopsy is recommended to confirm). However, giving up gluten had a MAJOR effect on my joint pain and swelling. HUGE. It also had a MAJOR effect on gassiness. It's a night and day difference, and I am not willing to eat gluten again all for the purpose of getting a biopsy. After figuring out how badly gluten was affecting me, I then tried dropping dairy, and the response was similarly dramatic. At this point, if I have an accidental exposure, I know it because of the pain and because my stomach is upset. My official diagnosis is non-celiac gluten intolerance and also lactose intolerance. However, it took years to figure it all out because like you, my "normal" was miserable and I didn't know it.

[Indigo Blue]

2 hours ago, 73349 said:

The restaurant staff are really asking for information about what they should do, not for the customer's diagnosis. If you need it celiac-safe--regardless of whether you have a diagnosis--you might as well say so, because it's what they need to know.

That said, I very, very rarely trust a mixed-kitchen restaurant, so it's not a frequent question either for my celiac child or for me (likely celiac).

I can't speak for others, but I didn't get tested because my doctor turned me down when DS was diagnosed: the US standard at the time was not to test 1st-degree relatives unless they had symptoms, and I didn't realize I was having symptoms because they'd been my normal for decades. Now the standard has changed, but I am definitely not bringing wheat in my house & risking glutening DS (and bringing back my symptoms) for a month before a blood test and then continuing until I could get a biopsy scheduled, possibly several more weeks. I might as well just eat like DS, which includes assuming all restaurants are unable to serve us unless we have confirmation that they're 100% gf or we have multiple symptomatic celiac witnesses affirming they've eaten there multiple times without a reaction. That means we eat out about once a month and often drive to another town for it.

I agree that you should say you need it to be celiac-safe if you know you need that level of carefulness. I’m perplexed about the testing…..silent celiac is a thing, and biopsies can easily miss a diagnosis if you don’t get the right section of intestines. If a doctor is going to try to rule it out, it just makes no sense to give a half-hearted attempt at it and call it good. Having diagnosed family members should be a good reason to be tested, IMO.

[Jean in Newcastle]

6 minutes ago, Indigo Blue said:

I agree that you should say you need it to be celiac-safe if you know you need that level of carefulness. I’m perplexed about the testing…..silent celiac is a thing, and biopsies can easily miss a diagnosis if you don’t get the right section of intestines. If a doctor is going to try to rule it out, it just makes no sense to give a half-hearted attempt at it and call it good. Having diagnosed family members should be a good reason to be tested, IMO.

There is an average 6 to 10 year delay to be diagnose accurately with celiac. Not everyone has the money, time or patience. Especially when their doctor is very sensibly telling them to listen to their symptoms and act accordingly. 

[Tap]

They aren't asking for a diagnosis, just level of care needed. Use celiac. It is simple and understood.

[Indigo Blue]

8 minutes ago, Jean in Newcastle said:

There is an average 6 to 10 year delay to be diagnose accurately with celiac. Not everyone has the money, time or patience. Especially when their doctor is very sensibly telling them to listen to their symptoms and act accordingly. 

I’ve known people whose doctor wasn’t very thorough in testing, resulting in delayed or non diagnosis. It happens. Not every doctor is sensible in their treatment/testing. I didn’t know it took that long to be diagnosed. I agree one should listen to their symptoms and act accordingly. I can see money being an obstacle. I would hope that I would have enough time or patience if I were that sick, and that my doctor would too. 
 

 

[heartlikealion]

Even if they are using a form, they are human. The server could make a note or say to the chef/kitchen staff “celiac safe.” 

Again, I wouldn’t really put much faith in a restaurant if a food issue is severe. 

Edited October 26, 2022 by heartlikealion

[Jean in Newcastle]

12 minutes ago, Indigo Blue said:

I’ve known people whose doctor wasn’t very thorough in testing, resulting in delayed or non diagnosis. It happens. Not every doctor is sensible in their treatment/testing. I didn’t know it took that long to be diagnosed. I agree one should listen to their symptoms and act accordingly. I can see money being an obstacle. I would hope that I would have enough time or patience if I were that sick, and that my doctor would too. 
 

 

My daughter (who had excellent doctors) took four years to be diagnosed. Not all people with celiac have strong gastrointestinal symptoms. My daughter’s symptoms were primarily cardiac. But once we exhausted lots of other avenues of testing we hit on celiac testing- which was positive. 
 

My own symptoms didn’t appear to be gastrointestinal BUT after being off of gluten to celiac levels for a couple of years, when I am glutened, my body reacts strongly with gastrointestinal symptoms. My body was just used to the abuse before. 

[73349]

1 hour ago, Jean in Newcastle said:

I use a “crowd sourced” app called Find Me Gluten Free” to find safe restaurants. Of course dedicated gluten free restaurants are best but some other places have been ok for me. (I don’t know if that if it’s nationwide but I have used it in more than one state.). 

I crowdsource using a local GF Facebook group, and that's how I know about the few places we trust. (The app was somewhat helpful before the pandemic but locally has had few inputs of recent experiences. An additional challenge with restaurants is that I don't want to eat meat/fish very often, and that's all many  restaurants offer as their GF option.) There's a place 5 minutes away that's safe, but the quality of the food varies. Another is 10 minutes away, but the food is no better than we can make pretty easily at home. Other options are 20-45 minutes away, and two of our favorites have closed in the last couple of years. I keep an eye on the group & do a search before trying anywhere new--it happens pretty often that someone raves about a good experience, and then a few weeks later, someone else reports having gotten sick before even getting home. This is an an area with a lot of restaurants, but the Venn diagram of "I trust them to feed DS" and "They have something on the menu I'd like to eat" has little overlap.

I'm going to make sure DS knows how to cook anything he wants for himself safely, because in a lot of the country, you just can't rely on restaurants very much. At least we have Wegmans to get ingredients from.

[Harriet Vane]

1 hour ago, Jean in Newcastle said:

There is an average 6 to 10 year delay to be diagnose accurately with celiac. Not everyone has the money, time or patience. Especially when their doctor is very sensibly telling them to listen to their symptoms and act accordingly. 

Yep. It took my sister seven years to get a definitive diagnosis. She lost her gallbladder along the way, which is quite common.