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What Would You Have Done?


cmzirkelbach

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cmzirkelbach Newbie

My family was on vacation (in Canada) at a hotel with a continental breakfast (breads, muffins and cereal, Oh my!). We were sitting outside of the main dining room eating when a mother walked out of the dining room with a child, complaining about how she is fed up with her other daughter crying at every meal and refusing to eat anything. The mother and that child were pretty thin. A few minutes later, the crying daughter, who was also very thin, walked out with another adult who was quizzing her about whether she ate anything.

My husband and I looked at each other, and of course thought celiac, but how do you approach a total stranger under these circumstances? But, why else would a child cry at every meal, unless eating caused pain?

It was too late to stop them, and we looked for them on the grounds and could not find them. We ended up writing a letter and leaving it at the front desk as we were checking out that morning. The woman on duty at the time has a friend with celiac, and thought she knew the family we were concerned about and said she would deliver it.

As this happened to anyone else?


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CarlaB Enthusiast

No, but you did the right thing.

I mention it to anyone who tells me they or a relative/friend of theirs has been diagnosed with an autoimmune disease. This happened recently when the plumber (who is here a lot since we just renovated our bathroom) was here. His wife has been diagnosed with rheumatiod arthritis even though her tests for it come out negative. She goes days without eating as it causes pain. She's also very fatigued. He was thrilled to hear about celiac in hopes that it may answer some of her health problems.

Considering that 1:4900 are diagnoses and 1:133 have it, we do need to get the word out. There are countless numbers of people suffering needlessly. Also, it will become and easier disease to live with when 1% of the population is diagnosed with it!!!

Michi8 Contributor

I have one of those thin kids who cries or whines at (almost) every meal, and it's not because eating causes pain (he's old enough to tell us if something is painful or uncomfortable for him.) He is an extremely fussy eater, and we suspect that he's got a very sensitive palate, especially to bitter tastes (eg veggies) and mushy textures (eg mashed potatoes.) It goes along with his sensitivity to touch, smell, sound and sight. Unfortunately, his food fusiness sometimes becomes more pronounced when he's eating away from home, and has a limited selection of foods (like with a continental breakfast...BTDT.) My son could have celiac, but there is nothing about his growth and health that indicate it directly at this point in time.

It is an embarrassing situation for parents, and I would be absolutely mortified and angry if a stranger approached me to give me suggestions about what could be causing the crying. Personally, I would trust that the parents of the child are well aware of the issue, and could very well be looking into diagnosis with their doctor already.

Michelle

tarnalberry Community Regular

Not only are there a lot of other things that can cause pain during meal time than celiac, there are a lot of other things that can cause crying at meal time besides pain. I think you jumped to one to many conclusions there. Yes, celiac is a possibility, but one of many, and - I would venture - not even the most likely on the list. I don't think there's a good way to bring it up in that situation, I'm afraid.

eKatherine Apprentice
I have one of those thin kids who cries or whines at (almost) every meal, and it's not because eating causes pain (he's old enough to tell us if something is painful or uncomfortable for him.) He is an extremely fussy eater, and we suspect that he's got a very sensitive palate, especially to bitter tastes (eg veggies) and mushy textures (eg mashed potatoes.) It goes along with his sensitivity to touch, smell, sound and sight. Unfortunately, his food fusiness sometimes becomes more pronounced when he's eating away from home, and has a limited selection of foods (like with a continental breakfast...BTDT.) My son could have celiac, but there is nothing about his growth and health that indicate it directly at this point in time.

It is an embarrassing situation for parents, and I would be absolutely mortified and angry if a stranger approached me to give me suggestions about what could be causing the crying. Personally, I would trust that the parents of the child are well aware of the issue, and could very well be looking into diagnosis with their doctor already.

Michelle

Why does the child cry or whine? Do you pester him to eat things that bother him?

Michi8 Contributor
Why does the child cry or whine? Do you pester him to eat things that bother him?

I'm sorry, what are you accusing me of? You think I "pester" my children into eating?

You've hit a real hot button here. I am extremely sensitive to my children's needs, have been since their birth. I work very hard to be in tune with their individual personalities and health issues. I, myself, have had multiple food allergies since childhood and so am very sensitive to their food reactions.

I am not looking for a diagnosis, and don't appreciate anyone sticking their nose in to examine what it "appears" I might be doing wrong. MYOB.

Michelle

eKatherine Apprentice
I'm sorry, what are you accusing me of? You think I "pester" my children into eating?

You've hit a real hot button here. I am extremely sensitive to my children's needs, have been since their birth. I work very hard to be in tune with their individual personalities and health issues. I, myself, have had multiple food allergies since childhood and so am very sensitive to their food reactions.

I am not looking for a diagnosis, and don't appreciate anyone sticking their nose in to examine what it "appears" I might be doing wrong. MYOB.

Michelle

I'm sorry if you were offended, but you brought up the topic. I was unaware it was off-limits.


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ravenwoodglass Mentor
I have one of those thin kids who cries or whines at (almost) every meal, and it's not because eating causes pain (he's old enough to tell us if something is painful or uncomfortable for him.) He is an extremely fussy eater, and we suspect that he's got a very sensitive palate, especially to bitter tastes (eg veggies) and mushy textures (eg mashed potatoes.) It goes along with his sensitivity to touch, smell, sound and sight. Unfortunately, his food fusiness sometimes becomes more pronounced when he's eating away from home, and has a limited selection of foods (like with a continental breakfast...BTDT.) My son could have celiac, but there is nothing about his growth and health that indicate it directly at this point in time.

Michelle

This is just a suggestion but you may want to consider the possibility of celiac. This is the same sort of thing that I used to see in my DS, (who also has Aspergers at a very high functioning level) and to some lesser extent in his sister. His taste buds and senses of touch and feeling were on hyperdrive. We didn't think much of it because I am the same way. It wasn't until after he was diagnosed and went gluten-free that we realized all the things that were being impacted. He did have growth problems but his sister who is also celiac grew normally and had a good weight until her teens.

Michi8 Contributor
I'm sorry if you were offended, but you brought up the topic. I was unaware it was off-limits.

If you had read my original post thoroughly, you would have seen that I used my son's fussiness as an example to say that if someone had approached me to tell me what they thought about his fussing, I would have been moritified and angry. Nowhere in that post did I ask for help.

Michelle

eKatherine Apprentice
If you had read my original post thoroughly, you would have seen that I used my son's fussiness as an example to say that if someone had approached me to tell me what they thought about his fussing, I would have been moritified and angry. Nowhere in that post did I ask for help.

Michelle

Given the extent of undiagnosed celiac in the general public, I think it is highly unlikely that these people have considered it and legitimately ruled it out.

Michi8 Contributor
This is just a suggestion but you may want to consider the possibility of celiac. This is the same sort of thing that I used to see in my DS, (who also has Aspergers at a very high functioning level) and to some lesser extent in his sister. His taste buds and senses of touch and feeling were on hyperdrive. We didn't think much of it because I am the same way. It wasn't until after he was diagnosed and went gluten-free that we realized all the things that were being impacted. He did have growth problems but his sister who is also celiac grew normally and had a good weight until her teens.

Sigh. Again, I didn't ask for help. Trust me, I'm as in tune with my kids as possible, without being neurotic about it. My son does not have Aspergers. We have been to a psychologist to work through some of his sensitivies (which are similar to my sensitivies, BTW) and to help him develop skills to deal with stuff out of his control (eg at school.) We deal with his food issues as gently as possible, balancing it with everyone else's food issues. My son is brilliant in art and math. We are contemplating doing an educational assessment when he is a bit older. He is inquisitive, observant and healthy.

I am looking into celiac for myself right now (negative panel, bone density test today, skin patch testing in two weeks, edoscopy in Nov, colonoscopy in March.) I will be looking into it with the kids after that, because all three kids have different health issues that could be realted to celiac: 1st son has chronic constipation (being treated, and had negative celiac panel BTW), 2nd son is thin, but has no other health signs other than hayfever, daughter has head to toe eczema, allergies, and the start of asthma. The diagnosis of celiac will have to come with time. No other extended family members are willing to test, so I am the pioneer here.

Michelle

Given the extent of undiagnosed celiac in the general public, I think it is highly unlikely that these people have considered it and legitimately ruled it out.

But I believe it is inappropriate to approach a stranger in that situation. Being a thin, fussy eater does not necessarily mean celiac.

Michelle

ravenwoodglass Mentor
Sigh. Again, I didn't ask for help. Trust me, I'm as in tune with my kids as possible, without being neurotic about it. My son does not have Aspergers. We have been to a psychologist to work through some of his sensitivies (which are similar to my sensitivies, BTW) and to help him develop skills to deal with stuff out of his control (eg at school.) We deal with his food issues as gently as possible, balancing it with everyone else's food issues. My son is brilliant in art and math. We are contemplating doing an educational assessment when he is a bit older. He is inquisitive, observant and healthy.

Michelle

I was not implying he does have aspergers only you and your doctors could tell about that. Aspergers by the way does not mean lower intelligence or functioning on an educational level, in fact it is usually the opposite. My DS is a honor student who just won a full scholarship to a very good school and is also very talented in art, science, philosopy, and mathmatics and mechanics. His Aspergers effected his social understanding.

I am sorry if you were offended, this is a message board with a lot of people at various stages of knowledge and understanding about celiac disease. It is natural for people to comment on the things other people state. The whole purpose of boards like this one is to learn from each other and that takes communication.

I hope you find answers soon to your problems.

tarnalberry Community Regular

This is one of the reasons - besides the fact that there isn't necessarily a good reason to think that celiac is the most likely culprit - that there is no way to bring it up to strangers in public. It's a hot button issue, and there really isn't a polite way of bringing it up. But, please keep in mind, as celiacs, we tend to see celiac in everything, even when it's not there. It really isn't the cause behind everything.

CarlaB Enthusiast

It depends on the situation, of course, and would need to be brought up delicately, that's for sure. If someone approached me because I had a fussy, skinny child who refused to eat because it seemed to hurt, and said, "You know, I was like that as a child and I have this disease, I was just wondering if it's after any certain food that your child gets tummy aches. If it is, she may have what I do ..." That's not accusatory in any way and it would have saved me years of health problems if someone had said that to my mom.

Some parents are working on what the issue is, some parents are not. Mine did not do a thing to see what was wrong with me and would just tell people I was a baby and had a low-threshold of pain. Even when I was in my room with bad diarrhea (I had my own bathroom in my room ;) ), they would basically ignore me as if I were making it up and would act like I was putting them out if I needed anything.

I would be more concerned that a child go till they're 43, like I did, than that I unitentionally hurt someone's feelings. Of course, no one's feelings should be hurt if the topic is brought up delicately like I mentioned. Unless someone is oversensitive, then it's their problem in my opinion.

This is one of the reasons - besides the fact that there isn't necessarily a good reason to think that celiac is the most likely culprit - that there is no way to bring it up to strangers in public. It's a hot button issue, and there really isn't a polite way of bringing it up. But, please keep in mind, as celiacs, we tend to see celiac in everything, even when it's not there. It really isn't the cause behind everything.

True, but it might enlighten them to the idea that it's a food allergy causing the problem.

Michi8 Contributor
I was not implying he does have aspergers only you and your doctors could tell about that. Aspergers by the way does not mean lower intelligence or functioning on an educational level, in fact it is usually the opposite. My DS is a honor student who just won a full scholarship to a very good school and is also very talented in art, science, philosopy, and mathmatics and mechanics. His Aspergers effected his social understanding.

I am sorry if you were offended, this is a message board with a lot of people at various stages of knowledge and understanding about celiac disease. It is natural for people to comment on the things other people state. The whole purpose of boards like this one is to learn from each other and that takes communication.

I hope you find answers soon to your problems.

I appreciate the knowledge that other have on this board...its the reason I came here while I'm sorting through my own health issues.

Aspergers has touched a number of families I know personally, and it was top of mind for me (along with OCD) when my son started showing his sensitivies. But he isn't exhibiting the social issues that coincide with the disorder, and that has been confirmed by doctors and our psychologist. In both mine and my husbands families we have many family members who have the same brilliance...some in math & arts, and some more in languages...and along with the brilliance comes certain personality traits that we're seeing in my son as well. :)

Michelle

Michi8 Contributor
It depends on the situation, of course, and would need to be brought up delicately, that's for sure. If someone approached me because I had a fussy, skinny child who refused to eat because it seemed to hurt, and said, "You know, I was like that as a child and I have this disease, I was just wondering if it's after any certain food that your child gets tummy aches. If it is, she may have what I do ..." That's not accusatory in any way and it would have saved me years of health problems if someone had said that to my mom.

Some parents are working on what the issue is, some parents are not. Mine did not do a thing to see what was wrong with me and would just tell people I was a baby and had a low-threshold of pain. Even when I was in my room with bad diarrhea (I had my own bathroom in my room ;) ), they would basically ignore me as if I were making it up and would act like I was putting them out if I needed anything.

I would be more concerned that a child go till they're 43, like I did, than that I unitentionally hurt someone's feelings. Of course, no one's feelings should be hurt if the topic is brought up delicately like I mentioned. Unless someone is oversensitive, then it's their problem in my opinion.

True, but it might enlighten them to the idea that it's a food allergy causing the problem.

I don't think the subject should be brought up at all. I view it as any other parenting issue. I do not want it pointed out and questioned by strangers in public. If my kids were crying and creating a scene in public (for example, having a tantrum a the grocery store,) I just want to minimize it and remove them from the situation as quickly as possible. The last thing I would want is someone who doesn't know the whole story giving their opinion of how I should handle it. Same goes for opinions about health issues.

Michelle

GFBetsy Rookie

I don't know. I once spoke to a lady in the fabric store. She was standing in line behind me, and was accompanied by her 2 sons. I could tell that one was older than the other, but only because he was marginally taller. He looked like a walking skeleton. You could see all the bones in his elbow, his cheekbones stuck out and you could see his jaw-bone, and his knuckles were very obvious because his fingers were SOOO skinny. The thing that made it stick out so far (to me, anyway) was that his little brother was so . . . healthy looking, for lack of a better word. He had a little baby fat left (he was about 7 or 8), and just looked well nourished.

I stood there in line for a minute wondering if I should say anything, and finally decided that I would berate myself forever if I didn't say SOMETHING. So I said : "I was just noticing how skinny your son is." She threw her hands up in the air (near her face) and got this look on her face like "Here come the allegations of child abuse". She said (without even drawing a breath): "He eats like a horse and he doesn't gain weight and the doctors don't know why." I said: "There's this disease that runs in my family called celiac . . ." and went on to explain some of the symptoms (especially the difficulty in gaining weight). We talked about it for several minutes (those fabric store lines move very slowly) and I wrote it down for her so she could talk to her doctor about it if she wanted to. She told me that no doctor had ever talked to her about celiac being a possible explanation of her son's weight pronblems.

I have no idea if she ever did anything about our conversation. She may not have. She may just have become aware of the term "celiac", and perhaps someday she'll read a newspaper article about it and say to herself "That's the disease that pushy lady in the fabric store was talking about . . . hmmm, maybe I should ask my doctor about this after all." But at least I know that I didn't leave that child to starve to death because I was too afraid to bring up a touchy subject with a stranger. He may not have celiac at all, but I couldn't just walk away without suggesting it as a possibility.

My great-aunt died from complications of celiac in the 20's or 30's when she was just 5 or 6 years old. My great-grandfather insisted on an autopsy, because there was no reason for her to starve to death the way she did. The doctor told my GGPa that it was celiac and that it was genetic, so his decendants needed to watch out for it. Because of that, my family has known about this disease for a lot longer than most people have. We didn't know about the "non-classic" symptoms, so a lot of my family members went undiagnosed until recently, but my grandad was always looking out for those "starving to death" signs of celiac. One Sunday 30 or 40 years ago, a member of his church brought a visiting grandson to church with her. He was incredibly skinny. My grandfather looked at him and told his grandmother that they ought to take him off of wheat. He explained what had happened to his sister and they decided to try it. The boy's grandmother later told my grandfather "You saved his life. He was starving to death." Nobody had been able to tell them what the problem was, except for my grandfather, because he was one of the few people who knew about the disease. The mom I talked to had never heard of celiac disease, in spite of the fact that he ate like a horse and never gained weight and she'd talked to doctors about it. I mentioned it because I knew about it. I hope it helped. But if it didn't, at least I tried.

Sorry for the length . . . I get carried away sometimes :)

Guest nini

I forget what the term is, but when you are focused on something, ie: Celiac, you tend to see it everywhere in everyone... it's just that our awareness is keyed in on Celiac.

I do think we have an obligation to make people more aware of Celiac, but we have to be so careful to do it in a way as to not offend.

Michelle, I too would be mortified, but just keep in mind that everyone here has Celiac on the brain and that is usually the first thing we think of. And, we also know that Celiac is genetic and runs in families and doesn't always manifest in gastrointestinal distress. So even though you don't think it's Celiac, it is something to consider. My daugher was an extremely picky eater before dx, and now, she tries just about anything. Just a thought.

Michi8 Contributor
I forget what the term is, but when you are focused on something, ie: Celiac, you tend to see it everywhere in everyone... it's just that our awareness is keyed in on Celiac.

I do think we have an obligation to make people more aware of Celiac, but we have to be so careful to do it in a way as to not offend.

Michelle, I too would be mortified, but just keep in mind that everyone here has Celiac on the brain and that is usually the first thing we think of. And, we also know that Celiac is genetic and runs in families and doesn't always manifest in gastrointestinal distress. So even though you don't think it's Celiac, it is something to consider. My daugher was an extremely picky eater before dx, and now, she tries just about anything. Just a thought.

Thanks, nini. I do suspect celiac is in my family. But I'm going through the process of diagnosis carefully. I don't want to put my kids through unnecessary invasive tests (or be given the Munchausen by proxy label!) We're dealing with their current symptoms and trying different things. When I go through my own tests, then I may have enough info to proceed through further tests with the kids. I also suspect my husband may have it, but he is a tough one to convince (and he doesn't want to give up beer! LOL!). Given his scandinavian heritage and symptoms in his whole family I bet the tests would be positive. I also have to work around DH's skepticism with putting our family on a gluten-free diet...it is a delicate balance with working through the process. One step at a time though...like I said, I'm the pioneer here.

I can understand the focus for people who have celiac, and the need to get the message out. I was made aware of it myself with a campaign that was televised in the mid-nineties in BC. Then my boss, who didn't have any of the "classic" symptoms, was diagnosed. I'm not diagnosed myself (yet) but even I'm spreading the message to others about getting tested.

It's hard to know when the message is welcome and when it isn't. It's not unlike spreading the message about any other health topic. For example, I'm a big believer in extended breastfeeding, natural birth, homebirth and attachment parenting. I like to encourage other parents to follow that path. But I am careful to limit my enthusiastic support/promotion to those who are receptive. It's a touchy subject, and I don't know others' history/experience. And I would never go up to a total stranger and tell them how they should be feeding/raising their kids.

Michelle

CarlaB Enthusiast

Michelle, I agree you can't tell others how to raise their kids even though you had a good experience with one method (I happen to agree with you). However, the difference is that celiac is on a lot of people's minds ... with the statistics that 1:4900 are diagnosed but 1:133 have it, the NIH is even taking it seriously now. I know it can be on your mind, like Nini said, but underdiagnosis is a very real problem. Anytime someone mentions IBS or some other disease that is commonly diagnosed instead of celiac, I bring it up. Of course, we're already talking about health. It would be nice if we had little pamphlets that said something about not taking offense, but the person who gave this to you thought you might benefit from knowing about this underdiagnosed disease ... I'm only half-joking.

Michi8 Contributor
Michelle, I agree you can't tell others how to raise their kids even though you had a good experience with one method (I happen to agree with you). However, the difference is that celiac is on a lot of people's minds ... with the statistics that 1:4900 are diagnosed but 1:133 have it, the NIH is even taking it seriously now. I know it can be on your mind, like Nini said, but underdiagnosis is a very real problem. Anytime someone mentions IBS or some other disease that is commonly diagnosed instead of celiac, I bring it up. Of course, we're already talking about health. It would be nice if we had little pamphlets that said something about not taking offense, but the person who gave this to you thought you might benefit from knowing about this underdiagnosed disease ... I'm only half-joking.

But there is difference when someone brings up a health topic that naturally flows into mentioning celiac. It is an entirely appropriate venue in which to bring it up. Approaching someone out of the blue, however, may not be appropriate.

Celiac is on the minds of a lot of people in the celiac community, and I agree that the word needs to be spread. But it may not be appropriate to approach people on an individual basis, given that you don't know a strangers' health history. This is where there needs to be a strong community-based campaign to raise awareness and, more importantly, education in the medical community to make clear that old perceptions of the disease are just plain wrong and that screening for the disease should become top of mind.

Michelle

cmzirkelbach Newbie

Interesting feedback...I agree it is a hard topic to bring up to strangers and I applaud GFBetsy.

From my own experience, my son was in SE preschool when he was four, one of the aides, who also worked as an EMT, pointed out to me on a Friday that my son seemed thirsty lately. I said, fine, just give him water to drink if he is thirsty.

A friend babysat him on Saturday night and talked about how thirsty he seemed when we met on Monday. Light finally dawns, we go to the hospital and it was diabetes.

When he went back to school, the aide told me she was concerned that it might be diabetes, but did not feel comfortable saying so to me. Ugh! And she saw me everyday when I dropped him off at school.

I would not want that to happen to anyone else. So, I may have jumped to conclusions, but I responded to the mother complaining loud enough for the whole room to hear about the daughter's crying, fussing and not eating at every meal, and she seemed to be at her wit's end; I did not hear or see the child during the meal time. Plus, she and her two daughters were very underweight. Not enough for a diagnosis, but those are clues. And, we all know how underdiagnosed celiac is, that public awareness is low, and even people/parents/family involved in diagnosis can remain in denial. And, many food intolerances are not yet recognized by the medical community.

I would have loved to have had the opportunity to strike up a conversation with the mother, but we were checking out that morning. Clearly, I did not feel comfortable chasing her down and bringing up the idea of food intolerances to her either, but I still feel I did a real disservice to the daughter, who was maybe 5,6?, as leaving some info at the desk was a shot in the dark.

Michi8 Contributor
Interesting feedback...I agree it is a hard topic to bring up to strangers and I applaud GFBetsy.

From my own experience, my son was in SE preschool when he was four, one of the aides, who also worked as an EMT, pointed out to me on a Friday that my son seemed thirsty lately. I said, fine, just give him water to drink if he is thirsty.

A friend babysat him on Saturday night and talked about how thirsty he seemed when we met on Monday. Light finally dawns, we go to the hospital and it was diabetes.

When he went back to school, the aide told me she was concerned that it might be diabetes, but did not feel comfortable saying so to me. Ugh! And she saw me everyday when I dropped him off at school.

I would not want that to happen to anyone else. So, I may have jumped to conclusions, but I responded to the mother complaining loud enough for the whole room to hear about the daughter's crying, fussing and not eating at every meal, and she seemed to be at her wit's end; I did not hear or see the child during the meal time. Plus, she and her two daughters were very underweight. Not enough for a diagnosis, but those are clues. And, we all know how underdiagnosed celiac is, that public awareness is low, and even people/parents/family involved in diagnosis can remain in denial. And, many food intolerances are not yet recognized by the medical community.

I would have loved to have had the opportunity to strike up a conversation with the mother, but we were checking out that morning. Clearly, I did not feel comfortable chasing her down and bringing up the idea of food intolerances to her either, but I still feel I did a real disservice to the daughter, who was maybe 5,6?, as leaving some info at the desk was a shot in the dark.

I would fully expect a caregiver to report any issues going on with my child...they are an important ally in ensuring healthy emotional and physical development. They are in a good position to do this as they see your child for a good amount of time outside of your presence, and know enough about the child's typical behaviour to know if something's not right. It is too bad the aide didn't mention suspecting diabetes, as it would have given you a heads up for going to the doctor sooner.

The mother of the fussy girl, however, sounded like she was creating a bit of a scene. Perhaps she wanted all who may have witnessed her daughters' actions to know that she was embarrased about what happened in public. Being at one's wit's end isn't necessarily an immediate cry for help, but an outward expression of frustration. Personally, I find it more helpful to simply have others commisserate, rather than offer their opinion on how to solve the issue, or to tell me that I've handled something poorly. I especially appreciate the times when I'm told I've done a good job of keeping my cool in a stressful parenting situation.

Michelle

eKatherine Apprentice
The mother of the fussy girl, however, sounded like she was creating a bit of a scene. Perhaps she wanted all who may have witnessed her daughters' actions to know that she was embarrased about what happened in public. Being at one's wit's end isn't necessarily an immediate cry for help, but an outward expression of frustration. Personally, I find it more helpful to simply have others commisserate, rather than offer their opinion on how to solve the issue, or to tell me that I've handled something poorly. I especially appreciate the times when I'm told I've done a good job of keeping my cool in a stressful parenting situation.

Michelle

Well, if it were the case that I thought the mother was putting on a scene for the purpose of embarrassing the daughter (for doing something that nobody else actually noticed) I would hardly commiserate with her. I do not consider public humiliation to be an effective child-rearing technique. That's just bad behavior on the mother's part, on par with a 2 year old having a tantrum, or maybe worse, as we adults are supposed to be in control of our behavior. I might take it as a call for input - it was her choice to create a public scene where none existed. But generally speaking, I would be embarrassed for the child and simply ignore this display, as paying attention will perpetuate the issue.

gfp Enthusiast

Intervening with someones kids is always risky ... but where do you draw the line?

I was queing for a phone card in a tobacconists a week or so ago and some very heavility pregant woman pushes through the long queue ... saying she's pregnant and can't queue (fair enough) and then buys 2 packets of cigarettes?????

Sure I'll let her through if she wants to buy stamps or a phone card at midnight but I felt a bit put out she was buying cigarettes!!!!!!

A long time ago (back when I lived in England briefly) I was at a supermarket and watched a mother packing her car with the baby in the trolley and the trolley on a step. Nothing was more certain than the trolley was going to slide off the step... and as I packed my car I watched the trolley fall off the step and mananged to catch the baby.

I would hazard a guess that had I offered my advice the mother would have told me to mind my own business but it was SO obvious this was going to happen. She didn't exactly thank me either.... though I guess that was mainly shock!

Perhaps the mother learned her lesson? Perhaps the week later she repeated it and the baby got brain damage?

Who knows?????

The problem is we are all genetically predesposed to caring for babies... if anything I am the person least disposed this way I know, I really detest being around babies but I still don't want to see them come to harm.

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
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    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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