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Everyone Eats While I Watch: Your Honesty Needed, Please

Lynayah

By Lynayah
in Coping with Celiac Disease

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Lynayah Enthusiast
Lynayah
Posted

I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

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Jestgar Rising Star
Jestgar
Posted

Don't go. It will be a wonderful Father-Daughter thing, and it would ultimately be spoiled by them realizing the full impact of what they had done to you. There's no 'bigger person' involved here, it's you appreciating that your husband wants to do something special for his daughter.

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Roda Rising Star
Roda
Posted

I don't think you are being selfish just the opposite. This is an opportunity for him and your daughter to have a nice outing the two of them. Maybe after that you and her can do something special. I wouldn't want to sit there and not be able to safely eat anything either. Sure you could bring something to eat, but if you really don't want to go I don't see what the problem is.

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luvs2eat Collaborator
luvs2eat
Posted

I think there's selfishness going on... but it's not yours! Why would your husband choose a restaurant knowing that you'd be able to eat nothing and then call you selfish for not wanting to go and drink only water? I think you're telling him to go w/o guilt and have a great time w/ your daughter is very selfless rather than selfish!!

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

I can't believe this place can't fix a gluten free meal. If you haven't called the place you need to give them a call. I just had dinner at an Italian place whose speciality is of course pasta. My meal was gluten free.

I think one could go both ways on this. It would be nice as a father-daughter night out. I could go, not eat and enjoy myself but not everyone could do this. I'd be taking photos the whole time to document the dinner. If both of them want you to go I suggest you go or it will be remembered by your daughter as the night Mom refused to go to dinner with me.

I do vote your husband as being rather selfish on this matter.

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RoseTapper Newbie
RoseTapper
Posted

Do you want the honest truth? I would be extremely hurt if my husband and daughter chose a special restaurant knowing full well that I couldn't eat there safely. If they really want to eat at that particular restaurant, I agree with the others that they should go alone and spend time together. It would be hurtful and degrading to require you to sit there and "suck it up" while they got to thoroughly enjoy themselves.

You say very positive things about your husband, but I think he needs to empathize more with your condition. I honestly don't think he'd feel comfortable if the situation were reversed. Personally, I know my husband and daughter would NEVER choose a restaurant where all three of us couldn't eat, but that doesn't mean that they don't enjoy going to restaurants without me so that they can enjoy pizza or Japanese food. In fact, they're so worried about my feelings being hurt, they usually don't even tell me when they've gone out together to enjoy these types of meals. They have pizza delivered only on evenings when I'm working late so that I don't have to smell it (it was my favorite food before being diagnosed, and the gluten-free pizza shops are located too far away for delivery).

In this instance, I believe your husband is being selfish....but you may not wish to mention this particular opinion to him because this might cause an even bigger tiff. I believe, though, that he needs to be a LOT more understanding of your illness. It IS a disease that not only affects us physically--it affects us socially and emotionally. Perhaps an experiment is in order! Of course, he'll have to be willing to play along....but if you were to meet up with him at his all-time favorite restaurant when he was especially hungry and then explained to him that the rules would be that you would eat a meal in front of him without his ordering anything and without your sharing even a morsel of what you were eating--how do you think he'd feel? You and I know exactly how he'd feel, because we've had to do this very same thing time and time again. I guess you could call this tough love, but he might "get" it.

Good luck!

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tictax707 Apprentice
tictax707
Posted

I agree with the general consensus so far as well. Just recently I have decided to quit going places where I can't eat and watching people eat just to be social. It sucks. I don't think you are being selfish at all, and I am sorry that your family chose a restaurant you can't eat at, and still expect you to go! That seems a bit unreasonable really. If they really want you to go, then it needs to be someplace that you can eat. If they really like the restaurant and really want to go (which I can also understand), then they just need to respect your wishes to bow out this time.

But on the other hand, are you SURE you can't eat there? Have you called and talked to the chef or the manager? There may still be hope. Maybe you could get a salad with oil and vinegar or something...?

I wish you the best in sorting this out. I'd be interested to know how this story ends!

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K8ling Enthusiast
K8ling
Posted

Don't go. You'll end up depressed and resentful, they'll feel bad and it will ruin an otherwise special night. I definitely agree with the "Father Daughter" thing. Hopefully they'll jump on board!! Good luck :)

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afreeclimber74 Rookie
afreeclimber74
Posted

I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

It sounds like your family wants to spend time with you.

Don't bow out because you think you'd be doing them a favor. If hubby is upset about your intended absence, then why would you think you're doing the right thing?

Bring some food in your purse and order an empty plate.

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gary'sgirl Explorer
gary'sgirl
Posted

Oh! It makes me so sad to think of all the extra difficulties that we have to go through with this disease. It not only affects our physical life and social life, but it also affects our emotional life and our relationships.

Lynayah,I definitely don't think you are being selfish and if your husband could really understand where you are coming from I don't think he would ask you to go somewhere that you can't eat with your family. I just don't think that people who don't experience this exact thing can completely understand. It is selfish in a way, but I don't think that he can understand that completely. Of course our loved ones can come very close to understanding, but I truly believe that unless you have walked in someones shoes you can't completely understand where they are coming from.

I have been hurt by my friends and family and their apparent lack of understanding, but one day I realized that no one that doesn't have this disease, or something just like it, will ever be able to completely understand, and may at times inadvertently hurt or disappoint us. But, although I wish I had someone to talk with that would truly get where I'm coming from (that's what you all are there for - right? ;) ), I'm thankful that the ones I care for don't have to go through this - it's really hard and I don't wish it on anyone. I am sure you have already been to this point, but I thought I would just share it anyway.

All that to say, I don't think that you are being selfish at all and I don't think that your husband is meaning to be either - I think that someday he will realize, one way or another, that asking you to do that is not just a decision of being mature, but it is actually a very emotionally hard thing to do. It is something that in one way or another we are bombarded with everyday - even when it gets easier - it's a life change that doesn't mesh with what most people live.

I hope you figure out what will work for you guys. :)

~Sarah

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mushroom Proficient
mushroom
Posted

I'm so sorry about this situation. It is like your husband and your daughter are on one side of the valley, you on the other, and there is this wide river that divides you. I agree that it would be a wonderful father/daughter opportunity (I never had any one-on-one time with either of my parents), and it would be painful for you to have to sit there watching them eat a wonderful meal and enjoying themselves. Do not try and swim the river - sunbathe on the other bank and meet up with them later.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I would call the restaurant and ask to speak with the chef, they may need to call you back. They should be able to feed you something, a plain steak and baked potato or a salad and some steamed unseasoned veggies etc. If not then make a few calls to the better restaurants in the area and see if another might accomodate you.

My DD is getting married in the fall and when we discussed the reception dinner she just told me to bring my own food as the restaurant was doing something that would not accomodate me. Indeed their menus posted on line sure wouldn't. However I took it on myself to contact the person in charge at the restaurant. It turns out they do have the capacity to do gluten free food and I will be having plain turkey breast and steamed veggies. If I hadn't taken it on myself to contact I would be sitting and watching everyone else eat. Your family wants to spend time with you but also wants you to be safe and there should be a way to do so.

The alternative of bringing a little something in your purse, salad dressing for the salad or a salad from home etc might be something to do also but I think a couple phone calls might bring sucess with a nice restaurant.

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NorthernElf Enthusiast
NorthernElf
Posted

Tough one - I either wouldn't go or I would pack my own food & go...and, yes, eat my own food at the restaurant and have a glass of wine or something (I have done this lots before).

I thought I could do this last Christmas - my brother took DH, myself, and my kids out to a pizza place. It offered nothing but pizza. I was choked that he would do that - we were on holiday and there were lots of restaurants we could go to but he had to take us to this one because it was "neat". So I bucked up, brought my lunch kit and we went. Basically, I just go pissed off. Everyone had pizza (smelled real good) and ice cream and I sat there with my wine and didn't even touch my food.

I won't do that again - told hubby that too. He said it was mostly for the kids (he doesn't like to eat out much, and no it wasn't a kids restaurant). I said I didn't care - I wouldn't take a vegetarian to a bbq steak house that didn't have any vegetarian options, so I won't go to a place that doesn't have any gluten-free ones either (potentially, even if it's just a salad).

Maybe suggest your DH go with your daughter, spend some time together. If he says you're being selfish, look him in the eye and say really ? I am ?

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Northern Celiac Newbie
Northern Celiac
Posted

No you are not being selfish. Either you look after yourself or you don't

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weluvgators Explorer
weluvgators
Posted

I think you are doing a fantastic job of honoring your needs. And, realistically, I understand how hard it can be for others to understand our needs. It wasn't all that long ago that I had no idea about most of the stuff that I now understand about gluten, gluten intolerance, celiac and cross contamination! I think about the craziest, most mundane, yet incredibly critical details now ALL the time. And I have definitely learned from past mistakes! :rolleyes:

I have tried similar scenarios in several different ways, but most importantly I tried to do what *I* wanted to do. I have gone to social functions and eaten nothing. I had my own food in the car, and I ate both before and after the function. My lesson learned there was NOT to talk with the big gluten eaters closely - one of them got my when she was talking closely to me while eating chex mix & pretzels. Not everyone is super sensitive to airborne exposure, but *I* am - so now I try to respect and plan for that better.

I have contacted restaurants before hand to decide if there is any way that they can feed me something safely. That has always worked out well. Sometimes, working out well is having a complete understanding that there truly is *nothing* that they can safely prepare for me. But if it is a "nice" restaurant, I would expect that the kitchen has a true appreciation for feeding people. I have been pleasantly surprised by some of my experiences and interactions with kitchen staff and managers. A GOOD kitchen staff can pretty easily wrap their head around cross contamination and understand if they can safely feed you. Being able to identify and explain your needs for being fed safely is very helpful. I have helped kitchen staff in the past to figure out *how* to safely feed me.

And, whatever you decide you *want* to do, I hope that you will first and foremost enjoy yourself! I feel that you are not in any way being selfish to decline an invitation that may ultimately exclude you and leave you feeling uncomfortable.

So, how are you handling your food needs while on vacation? I typically make myself a really nice meal before these occasions where I want to socialize with others that will be eating. I have to laugh remembering one of the events that I went to and didn't eat at the party full of eating people, as there was one gentleman that just did not understand *why* I wasn't eating anything. But out of a crowd of 100 people, only one person seemed to be bothered by my not eating . . . and it wasn't me! :lol:

Good luck figuring this out - there really is not anything easy about learning to navigate the many, many details of living gluten free!

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ciavyn Contributor
ciavyn
Posted

Wow. This is a tough situation, but I wonder if perhaps your husband might be a bit frustrated? Seems odd to me that a good man who's a good husband and father would prepare you ALL this time in advance that, oh by the way, me and the darling daughter will be eating at this amazing restaurant for a super special time, but they can't accommodate you and we want you to go along and eat nothing. That to me sounds like a man who's frustrated that his wife can't join them, and might be passive aggressively lashing out in his frustration. And I'm not blaming him one iota. This whole thing stinks! :)

Let us know what you decide. I do agree that contacting the restaurant before you make your decision is worthwhile. If they can NOT accommodate you, I leave you with this thought. How would you like your daughter to view this situation? Would you want her to sit there, simply to please others and be miserable, when this is certainly not that important of an event (it's a meal, for pity's sake! We have several a day!) or would you want her to take care of herself and her emotional health first, and stand up for herself?

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Bev111 Newbie
Bev111
Posted

This has happened to me many times. Eat before you go and order a lovely salad. You would be very surprised at what a rest. can do for you. Isn't the point of going is to be with your loved ones? Let them enjoy the food and you can enjoy there company.

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kayo Explorer
kayo
Posted

It strikes me odd that he would emphasize that this place can't accommodate you. If it's a fine dining kind of place they can surely accommodate you.

I'd like to know how he knows they can't accommodate you. Did he call?

If your presence is so important he would have picked a place that works for all of you.

The fact that he wants you to sit there while they eat is creepy and come across as a punishment. I think he does not want you to be accommodated. He wants you to sit there and be denied. Cripes.

You are not being selfish, he is.

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eva-girl Newbie
eva-girl
Posted

i have alot of thoughts about this post:

1. how does your hubby KNOW this place can't accomodate your needs? did he call them? if not, call the restaurant and ask them. is it where you are all going on vacation or is it in your town? i'm a bit confused on that point. in any case, i'd call the restaurant and speak to the manager.

2. i'm pretty certain there is something else going on here. you say your husband is normally very supportive so maybe this isn't about the food? has there been tension between you two lately, or some strain that's been put on your marriage? in relationships we often push down what's really bothering us and make a big deal out of something else to deflect what's really bothering us.

3. i have never been to a restaurant (even pizza places) where i sat and ate nothing. at the very least you can get a salad and take your dressing with you, or get oil and lemon. you can enjoy a glass of wine and chat. or you can get dessert - lots of places have gluten-free dessert -poached pears, ice cream, etc. just ask a few questions and see.

4. to all the celiacs who constantly complain about how they have to watch everyone else eat and they can't eat anything and everyone is so mean, and their bosses offer them doughnuts and people don't ever bring gluten-free food to potlucks, and gluten is the devil, and everyone is celiac they just don't know it yet, etc. come on now: you just want to eat the cake, and the bread and the pizza, and you are taking that out on other people. let's be honest. if everyone were celiac there would be no wheat and no temptation, right? i feel you, believe me. but grow up aleady. i know diabetics who have to be so careful with insulin and diet (literally life and death mistakes - diabetic coma, anyone?) and they go out to eat, take precautions and don't sit and moan about how they can't eat this or that.

it is not everyone else's job to look out for us. we have to look out for us. but we can do it without being resentful and obnoxious. if you don't make your diet a huge problem (ie, complaining about everything, sulking etc)other people won;t see it as a problem either. nobody wants to have a party and then have the celiac show up and complain about how little there is to eat and how wheat is poison. i have read posts like this on this forum and i have to say i am shocked at the infantile rantings. simply bring a dish, thank your hostess for her hard work and have a good time.

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Looking for answers Contributor
Looking for answers
Posted

I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

You are definitely not being selfish, and I would have the same reaction. On the other hand, you obviously have a wonderful husband who truly enjoys your company and wants you to be there. Perhaps you guys could get you something beforehand and then you could enjoy tea or something.

Again, I totally agree with you, but I always play devil's advocate. From his end, he just wants your company and won't be able to enjoy the experience as much without you being there. There are worse things men can do :)

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Skylark Collaborator
Skylark
Posted

What do you mean by "special"? Is this somewhere with family significance, where you spent special occasions in the past? If so, I can see where there is some conflict and confusion.

If by "special" you mean expensive or exclusive as others have said it's unusual for a well-trained chef to be unable to make a gluten-free meal, even if it's as simple as salad, plain meat, and a baked potato. I've gotten some pretty spectacular gluten-free dishes at places where chefs really know their stuff, because they have a kitchen full of fresh, naturally gluten-free foods to work with.

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ravenwoodglass Mentor
ravenwoodglass
Posted

4. to all the celiacs who constantly complain about how they have to watch everyone else eat and they can't eat anything and everyone is so mean, and their bosses offer them doughnuts and people don't ever bring gluten-free food to potlucks, and gluten is the devil, and everyone is celiac they just don't know it yet, etc. come on now: you just want to eat the cake, and the bread and the pizza, and you are taking that out on other people. let's be honest. if everyone were celiac there would be no wheat and no temptation, right? i feel you, believe me. but grow up aleady. i know diabetics who have to be so careful with insulin and diet (literally life and death mistakes - diabetic coma, anyone?) and they go out to eat, take precautions and don't sit and moan about how they can't eat this or that.

it is not everyone else's job to look out for us. we have to look out for us. but we can do it without being resentful and obnoxious. if you don't make your diet a huge problem (ie, complaining about everything, sulking etc)other people won;t see it as a problem either. nobody wants to have a party and then have the celiac show up and complain about how little there is to eat and how wheat is poison. i have read posts like this on this forum and i have to say i am shocked at the infantile rantings. simply bring a dish, thank your hostess for her hard work and have a good time.

I find this rather harsh. This gluten-free lifestyle can be frustrating and difficult especially in the beginning. This is the one place many of us have to vent out frustrations safely. And sometimes we need to do so. Not everyone who vents their frustrations complains about everything, sulks, complain to hostesses, makes our family miserable or think that everyone on the planet is an undiagnosed celiac. There are also some of us who have extremely severe glutening symptoms and will suffer for weeks. The comparison of a diabetic needing to eat but doing so safely is not a fair comparison. Most diabetics are clear on what they can eat and don't need to fear that someone has 'dusted' their food with sugar. Sometimes we need to be able to vent to those that do understand but that doesn't mean we spend all our time making those around us miserable.

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weluvgators Explorer
weluvgators
Posted

Sometimes we need to be able to vent to those that do understand but that doesn't mean we spend all our time making those around us miserable.

Yes, Yes, YES! I look to support groups to help me work through the issues *before* I am in a situation and sometimes to help me develop my Lessons Learned! :rolleyes:

And when I first went gluten free I was just so grateful that *I* didn't have to figure out that cross contamination thing. Well, life has a funny way of teaching me, I guess!! But I have been blessed, and I am forever grateful for my daughter who has helped me navigate this as well as we have.

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rdunbar Explorer
rdunbar
Posted

No you are not being selfish. Either you look after yourself or you don't

this

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eva-girl Newbie
eva-girl
Posted

ravenwoodglass -

my point is that some -SOME- celiacs i have met in RL or have met through chatboards let celiac disease control their lives, to the point where they think everyone is against them or they have no control over what happens to them. that is a sad and lonely place to be.

in the beginning, yes, it IS overwhelming and scary, and i remember being really frustrated and freaked out, lost about 20 pounds (that i didn't need to lose) and cried...alot. but after a while you take a breath, see a nutritionist, read some books, and figure it out through trial and error. for example, i endlessly tried recreating bread (my fave food) but it just reminded me of how much i miss wheat bread. and that made me depressed and angry and snappy, and when i saw people eating warm buttered bread in restaurants i wanted to scream. eventually i saw the corellation and stopped trying to recreate a french loaf, and put my time into other things, and i felt much better. when i see/hear veteran celiacs complain about how mean/thoughtless their boss is by offering them a doughnut, for example, which i have read at least twice on this board, i think maybe it's about more than just the food. maybe some people feel out of control about othere aspects of their lives, or they have always felt like the blacksheep of their family, and the celiac diet makes them feel even worse. food tends to push buttons for alot of people, celiac or not, and i think it bears looking at. i so seldom hear anyone on this coping board talk about stress relief: yoga, meditation, therapy, kickboxing, whatever. i like to journal and sometimes my entries are just lists of food i miss, but it helps me enormously.

this is a difficult disease, but being furious at everyone around you won't help. obviously this is the place to vent, but i just think some people are so negative about everything, all the time; their every post is filled with anger, which can't be healthy. just offering a different perspective, or maybe i just believe in a little toughlove.

in any case this will be my last post so you can take this as you wish. good luck, all.

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      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
    5. Fluka66
      - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this...
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    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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