New Food Allergies And Family Doesn't Understand

[GlutenFreeManna]

I am so frustrated right now, I just need to get all my thoughts down and figure out if I'm somehow being unreasonable. Bare with me this might be long....

Recently I developed a severe allergy to milk. When I say severe I mean I accidently ate something with a little butter on it and my lips tingled and my tongue started to swell up. I immediately spit it out and took some Benedryl and was able to avoid going to the ER. This is all very new to me. I've been allergic to shellfish for decades (since I was a teen). I've been allergic to pork and mushrooms for almost 5 years. Pork and shellfish cause my throat to close up. Mushrooms make my lips tingle and my skin breaks out in hives. I learned to live without those foods. However, those are not as hard to avoid as dairy. I tested with goat cheese and found I also react to that. I'm devastated at having to cut out cheese again, but I'm convinced it's neccessary and I'm starting to get as strict about dairy free as I am about gluten free.

I went to my doctor when the reaction to dairy started. She is testing me for other auto-immune diseases and I'm waiting for an appointment with an allergist to find out what else I might be allergic to. My mom told me I had a dairy allergy when I was a baby but I "out-grew" it and she didn't keep me dairy free. I'm really upset that I never knew this before.

Now here's where the frustrating part comes in--my family is not at all understanding why I don't want to travel across the country to visit them for Easter. I have not said I won't go yet, but I am still undergoing testing for things and I have some other new symptoms besides the food allergies. I was freaked out by the new dairy reactions and feel like I need my diet to be stable and predictable for a while. I've gone back to a mostly whole food diet and I'm not eating out at a resturant again until I get this all sorted. I have traveled to see family once while gluten free and they accomodated me well (let me cook my food in foil, use my own pans, ate out at places with a gluten-free menu, etc). However, I feel like this is different now. Until I can figure out what is causing these new symptoms I don't want to take any risks.

My family is acting like these new food allergies and other symptoms are in my head and I'm being a big baby about it. There are neices and nephews (newly born to 2 years old) that I have not seen that are going to be at Easter Dinner. My family thinks I should put aside my food issues and just come to dinner to meet them. They are trying to make me feel guilty and saying I must not care to see them. Like I'm using these food issues as an excuse to not see them. I have told them several times they are welcome to come see me anytime--they can stay with my husband and I in our guest room and I would cook for them. They respond that they can't travel with the kids as easily as I can (being childless). However they have traveled several times in the past year to different places (often to see the grandparents) so traveling with kids must not be THAT hard. I have told them maybe we will get there to see them again when I get my food issues and health under better control. One family I am talking about we visited six months ago. The other one I visited a little over a year ago last. Both made us feel guilty when we didn't come for Thanksgiving and Christmas (I was in the hospital with pnuemonia in November and didn't feel up to traveling). One has two kids the other has only 1 so it's not as if they have very large families. They both also have two income households, live in low cost of living areas and make decent money. My husband and I live in a high cost of living area on one income because I have not been well enough to work for 3 years now. We do okay but can't afford anything extra (no cable tv, drive old cars, etc). When I tell them we can't afford to visit very often, I feel as if they are judging me and saying I should be working (one family member said I should get a job again). It's very difficult for us to afford to travel and now that I have new health issues it has become harder.

I'm so frustrated at not being able to travel and see family but I'm also really hurt by their response. I love to travel and I love my family but I don't want to die because I trusted a restuarant not to put cheese on my salad. I'm hoping I can get an epipen when I finally meet with the allergist as this seems like it's a dangerous allergy. Until then I just don't want to take chances. My family thinks I'm being over dramatic about it. Am I really being unreasonable?

[hnybny91]

I am so sorry you are going through all of this with your various food allergies. You need to do what is right for YOU hun. Do not let anyone make you feel guilty for taking care of YOURSELF in the way that YOU see fit, even if they would not do the same if it were them.

[eatmeat4good]

With friends (family) like that, who needs enemies?

I wouldn't go.

I would also not discuss my allergies with them anymore, they are obviously not concerned about you.

I would say, I'm sorry I won't be able to be there.

Benjamin Franklin said, "Fish and relatives stink after 3 days."

In your case, it's before you even get there.

Take good care of yourself and if/when you go, take your own food like you did before.

If people don't have the issue, they cannot understand it.

Sorry you have this to deal with on top of your allergies.

[Salax]

I agree with the others. Take care of YOU. Family is family. They'll either get over it or they won't, but its on them how they deal with it. They can either be loving or not. How they feel and what they do are not your issues; those are theirs. You need to heal right now, maybe you need to take a break from them and focus on you.

[ravenwoodglass]

You must be so hurt and disappointed with the way things are going right now. Sometimes family just doesn't really understand and there isn't much you can do about it. Would it help if your husband stresses to them that right now, as much as you would like to go, you are just too sick? I know from my own experience how much it hurts to not be able to go places you would really like to go and then have people you care about resent you for it. It's hard but you have to do what is best for you right now. Hopefully by summer you will be feeling better and be able to visit.

(((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))

[GlutenFreeManna]

Thank you all. I knew this board would understand. I've spent the last few days crying off and on about the whole situation--not just the family thing but also mourning the loss of dairy. My husband knew I was feeling down and brought me home one of my favorite gluten-free products tonight to try to cheer me up--only to find out that it has milk in it! He apologized up and down--he has been trained to check for gluten, soy and my other allergies but the milk thing is new so he forgot.

[wheeleezdryver]

Nope, I don't think you are being unreasonable.

My situation is different than yours, but I can understand your frustration all too well. My husband has disability (see my sig), and a) my parents don't seem to understand that travelling, for him, is sometimes basicly impossible, and I needed to quit working in order to take care of him AND *MY* health--- if I knew I could both work outside the home AND care for him properly, I would!! (when I first quit a couple of years ago, my dad said to me, 'geez, I wish I could retire at 30!! (I have yet to figure out how becoming a caregiver 24/7 with no vacatons is in any way similar to retirement!) Every health issue I have, (incl gluten intol) has come up since I quit working, probably I am QUITE sure due to the stress I was under when I WAS working... and I am only 34.

anywho, I can definately understand your frustration with non- understanding family members...

[GlutenFreeManna]

Nope, I don't think you are being unreasonable.

My situation is different than yours, but I can understand your frustration all too well. My husband has disability (see my sig), and a) my parents don't seem to understand that travelling, for him, is sometimes basicly impossible, and I needed to quit working in order to take care of him AND *MY* health--- if I knew I could both work outside the home AND care for him properly, I would!! (when I first quit a couple of years ago, my dad said to me, 'geez, I wish I could retire at 30!! (I have yet to figure out how becoming a caregiver 24/7 with no vacatons is in any way similar to retirement!) Every health issue I have, (incl gluten intol) has come up since I quit working, probably I am QUITE sure due to the stress I was under when I WAS working... and I am only 34.

anywho, I can definately understand your frustration with non- understanding family members...

Bless you for being a caretaker. I am only 31 and my husband has been a caretaker to me for the past 3 years while working full time. A little over a year ago (before I started gluten free) I was almost bed bound with pain, the doctor had revoked my driving priviledges and I was having unexplained seizures (as well as a whole lot of other symptoms). I have improved SO MUCH since then it's amazing, but I'm not sure if I will be able to go back to work or school (I was in grad school until my memory started to decline to the point where I could not read). And these new symptoms have me concerned I may have something other than celiac. Anyway, I appreciate your post and that you can relate. It's so hard when others don't understand and crushing when family tries to make you feel like you're a jerk because your body is failing you at a young age.

[GFinDC]

Shoot, tell them you have an important horse race to go at the track and lots of money riding on it. Then tell them you lost it all at the races and need them to send you money to buy GFCFSF food. Or you'll come and move in with them and your husband too. But you are too sick to baby sit but can watch their TV all day.

OK, maybe that's a stretch. But they don't understand and won't until they get that it is a serious problem for you. Maybe staying away for now will get the message thru their heads that it is not a joke.

I gave up dairy many years ago, before I even knew I had celiac. But I didn't have an IgE reaction (allergy) to it. IgE reactions are mcuh more immediate and can be deadly. Maybe you could remind them of the peanut kids who could die with just a little exposure.

[Juliebove]

I too was allergic to dairy as a baby. I couldn't even have goat's milk. Then for some reason my mom insisted that I drink milk. And she let me have cheese. Sometimes insisted that I eat ice cream even though I've always hated it. I grew up being sick to my stomach all the time! My mom would comment on it and laugh saying things like, "You are the urpiest kid I've ever known!"

Then when I was a teenager, my Dr. said he thought I was lactose intolerant and told me to stop drinknig milk. My stomach got a lot better. But it still wasn't always good. I still ate cheese and sometimes had milk cooked in things. When they came out with lactose free milk, I used that for cooking. But I never liked the taste of milk so didn't drink it.

Fast forward many years. Daughter was diagnosd with IgG food allergies, one of which was dairy. I mulled it over for a long time and decided to get myself tested. By then I had figured out on my own, due to severe reactions to egg after not eating any egg for a very long time that I could no longer have egg.

The Dr. said I was also allergic to dairy and almonds. Severe egg allergy. I gave those things up.

Some years later, daughter was retested. Outgrew some things and was now allergic to some others. Same thing happened for me. I am now allergic to oysters but no longer to dairy.

That Dr. told my daughter that she could have dairy twice a week but not on subsquent days. She told me I should probably never have it. However, I feel she was basing this on my severe reaction to egg. I think she thought dairy did the same to me. I tried some cheese cautiously and didn't react. So now I eat it. And occasionally butter. But no other form of dairy. And if I find those things give me problems again, I will give them up.

Daughter and I were tested for IgE allergies. None were found to foods. But the allergist did say that I have OAS to almonds and pistachios based on my reaction. Itchy throat, tingly lips.

My family doesn't understand either. They think we should make exceptions for things like family meals and birthday parties. They treat the allergies as they would a weight loss diet. Sure you can cheat on a weight loss diet. You won't lose weight but you won't get sick. But cheat and eat an allergen and you'll surely pay for it.

[GlutenFreeManna]

I gave up dairy many years ago, before I even knew I had celiac. But I didn't have an IgE reaction (allergy) to it. IgE reactions are mcuh more immediate and can be deadly. Maybe you could remind them of the peanut kids who could die with just a little exposure.

Sadly, one of these families even has a child with a nut allergy--they carry an epipen for her, don't allow nut products in their house and make people wash their hands when they come over. I'm hoping that I can get an epipen so they will take my allergies more seriously. They don't seem to believe that someone can develop an IgE reaction later in life. I would have trouble beleiving it myself if my body were not now doing it!

[jenngolightly]

Sadly, one of these families even has a child with a nut allergy--they carry an epipen for her, don't allow nut products in their house and make people wash their hands when they come over. I'm hoping that I can get an epipen so they will take my allergies more seriously. They don't seem to believe that someone can develop an IgE reaction later in life. I would have trouble beleiving it myself if my body were not now doing it!

Get an epipen!!! I developed food allergies in the past year and I'm over 40. My doctor immediately prescribed an epipen, even though my allergic reactions haven't been that bad. Since the allergy is new, you can't tell when the reaction will decide to accelerate, you know? I keep it with me in case I develop a reaction to something and things go terribly awry.

I can't eat a lot of foods now, but have found the delight of Lara bars - I can only eat one kind because of all my intolerances/allergies. I can eat the peanut butter cookie kind. It's such a great dessert when I'm feeling like I need something sweet. The pb lara bar only has peanuts and dates. I don't know what you can and can't eat, but they have lots of flavors, so you might find one you can eat.

It was really hard to give up a bunch of foods this year - I gave up sugar, corn, soy, dairy, all grains, and starchy veggies. But I feel great!!!!! I hope you find relief soon.

[GlutenFreeManna]

Get an epipen!!! I developed food allergies in the past year and I'm over 40. My doctor immediately prescribed an epipen, even though my allergic reactions haven't been that bad. Since the allergy is new, you can't tell when the reaction will decide to accelerate, you know? I keep it with me in case I develop a reaction to something and things go terribly awry.

I can't eat a lot of foods now, but have found the delight of Lara bars - I can only eat one kind because of all my intolerances/allergies. I can eat the peanut butter cookie kind. It's such a great dessert when I'm feeling like I need something sweet. The pb lara bar only has peanuts and dates. I don't know what you can and can't eat, but they have lots of flavors, so you might find one you can eat.

It was really hard to give up a bunch of foods this year - I gave up sugar, corn, soy, dairy, all grains, and starchy veggies. But I feel great!!!!! I hope you find relief soon.

I am waiting on an appointment with an allergist at the end of the month and hopefully I can get an epipen then. Did you regular dr prescribe it? Maybe I need to call my doctors office and ask for a prescription over the phone? I would feel better about traveling if I had one.

I love Lara Bars. They are one of the things I carry in my emergency food bag and for traveling. I haven't found any flavors I can't have yet. Unforotunately, since they all contain nuts I cannot take them when I visit family due to the child with a nut allergy. That's a whole other challenge to going there, most of my travel food involves nuts or nut butter. The nut allergic child is also allergic to sunflower seeds, sesame and eggs. All these are things which I eat on a regular basis from almond milk to peanut butter to sesame oil I can't take with me.

[Jungle]

Wow!

I can't imagine how hard it is even in your own home. To take your diet on the road and to a house that is nut-free is impossible.

I like the idea of having your husband call. What if he phoned them to let them know how worried he was about you. It might make more sense when he explains how worried he is that he might lose you to something as simple as a little milk put in some sauce. If he gives them more of a doom and gloom story of how it has been lately they might realize how serious you need to be about your diet. And how travel is not a smart option right now. He may even suggest that a visit from them might cheer you up as you are finding this new change so hard. Have him paint a dramatic picture for them under the guise of him asking for help supporting you.

If they still don't get it and are otherwise smart people, they don't care about you and don't deserve your effort.

I hope that you have a network of people that can and do support you.

[Juliebove]

Sadly, one of these families even has a child with a nut allergy--they carry an epipen for her, don't allow nut products in their house and make people wash their hands when they come over. I'm hoping that I can get an epipen so they will take my allergies more seriously. They don't seem to believe that someone can develop an IgE reaction later in life. I would have trouble beleiving it myself if my body were not now doing it!

I know of adults who developed IgE allergies to nuts as adults.

Sadly I know people who do not believe in allergies at all. One family used to laugh at us for our allergies. They were our neighbors. We believe they too had allergies because they had "colds" that never went away.

[Juliebove]

Sadly, one of these families even has a child with a nut allergy--they carry an epipen for her, don't allow nut products in their house and make people wash their hands when they come over. I'm hoping that I can get an epipen so they will take my allergies more seriously. They don't seem to believe that someone can develop an IgE reaction later in life. I would have trouble beleiving it myself if my body were not now doing it!

I know of adults who developed IgE allergies to nuts as adults.

Sadly I know people who do not believe in allergies at all. One family used to laugh at us for our allergies. They were our neighbors. We believe they too had allergies because they had "colds" that never went away.

[GlutenFreeManna]

Wow!

I can't imagine how hard it is even in your own home. To take your diet on the road and to a house that is nut-free is impossible.

I like the idea of having your husband call. What if he phoned them to let them know how worried he was about you. It might make more sense when he explains how worried he is that he might lose you to something as simple as a little milk put in some sauce. If he gives them more of a doom and gloom story of how it has been lately they might realize how serious you need to be about your diet. And how travel is not a smart option right now. He may even suggest that a visit from them might cheer you up as you are finding this new change so hard. Have him paint a dramatic picture for them under the guise of him asking for help supporting you.

If they still don't get it and are otherwise smart people, they don't care about you and don't deserve your effort.

I hope that you have a network of people that can and do support you.

Thank you for seeing what I am facing. My husband has talked to some family members and it still seems to be going over their head that this is not just lactose intolerance like I had before when I visited them last. In fact, he had a very frustrating phone convo tonight with a family member (not the one with the nut allergic child) about how sick I have been. He kept trying to explain how travel was just not a good idea right now and they kept telling him about this new fad diet they are on that involves eating mostly whole wheat and barley grass supplements with fresh fruit and veggie smoothies and NO meat. My DH kept trying to explain to them that I can't eat wheat and barely due to celiac and if I were to cut out meat I would probably be anemic again. I'm on iron supplements as it is but I have noticed a big difference in how I feel when I eat red meat at least twice a week. Meat, veggies, rice and nuts are about all I eat now. Anyway, the relative just kept talking and talking about how red meat was bad for my cholesterol and that I also needed to cut out all sugar too, even after my hubby told them I'm anemic, my cholesterol is fine and I don't have blood sugar issues. He did talk to another family member after that conversation that was a little more understanding and recounted how they had food allergies as a child that they "outgrew". So at least one person is understanding the seriousness of this and okay with why we are not visiting. We're just hoping the ones that get it will spread the word ot the ones that don't, but it probably won't work like that. The barely grass drinking relatives will just go on being self absorbed and thinking that it's a personal slight against them that we don't visit more often.

[GlutenFreeManna]

I know of adults who developed IgE allergies to nuts as adults.

Sadly I know people who do not believe in allergies at all. One family used to laugh at us for our allergies. They were our neighbors. We believe they too had allergies because they had "colds" that never went away.

I have encountered the attitude that life-threatening allergies can't be real on other message boards. Usually when the topic of schools going nut free or designating nut-free zones comes up there are always a few parents arguing that their kids should be allowed to eat their peanut butter sandwiches at school because nut allergies are not relaly life threatening. I just shake my head at the ignorance. I have always believed life threatening alleries are real since I have had the shellfish allergy since I was a teenager at least (the first time I ever tried a piece of shrimp my throat closed up). I had also always heard that allergies can develop at anytime, but when it started happening to me again I was really shocked. I have enjoyed cheese all my life (except as an infant when my mom had me dairy free due to allergy). I think I was allergic all this time becaus ei also always had asthma, but something triggered the life threatening response to start. Maybe going gluten free or another auto-immunne disease is messing up my immune system. I don't know, but I hope I can get it all sorted out soon.

[eatmeat4good]

Call your Dr. and ask them to phone in a prescription for an Epipen since you will be travelling and have allergies. Mine did it without an appointment. Just ask, you might get it. Better safe than sorry. Can't imagine a reason a Dr. would say no. My allergies weren't even confirmed by testing. I just told the Dr. I had a new allergy and was worried. Good luck

[Takala]

Good thing it's late or my response would be less charitable towards your relatives. must.... not... unleash.... power.... of sarcasm.... yet.

No, dear, you are not being unreasonable. If they want to play Easter Resurrection By Epi - Pen, They're Going to Have to Invite Somebody Else This Year.

___________

I don't react to organic dairy. I'm convinced it is the antibiotic residue and God knows what other junque they make these poor cows put up with to lactate more, that is part of the problem, and that you and others may be getting over exposed to that. Because I've had tingles and itches before, very mild, a few times from eating some regular cheese and ice cream, but not since switching to the more expensive stuff. I'm NOT telling you to try this, only that my theory is that there is something in the milk besides milk we aren't getting the full story on.

[GlutenFreeManna]

Good thing it's late or my response would be less charitable towards your relatives. must.... not... unleash.... power.... of sarcasm.... yet.

No, dear, you are not being unreasonable. If they want to play Easter Resurrection By Epi - Pen, They're Going to Have to Invite Somebody Else This Year.

___________

I don't react to organic dairy. I'm convinced it is the antibiotic residue and God knows what other junque they make these poor cows put up with to lactate more, that is part of the problem, and that you and others may be getting over exposed to that. Because I've had tingles and itches before, very mild, a few times from eating some regular cheese and ice cream, but not since switching to the more expensive stuff. I'm NOT telling you to try this, only that my theory is that there is something in the milk besides milk we aren't getting the full story on.

Too Funny! I'm just about past the point of being charitable myself. We have told them firmly we are not coming this year and hopefully no one else will call trying to convince us. DH and I have many siblings and these are all siblings from both sides and our parents giving us grief. It hurts even more that they are not distant cousins or something.

About the milk, unfortuantely I had been using mostly organic dairy products when I started to react. The only thing that wasn't 100% organic was my yogurt because I was making it myself. In order to make yogurt it cannot be ultra pastuerized. I have never found an organic milk in my area that is oragnic and not ultra pasteurized (and I think buying raw milk is illegal here) so I can't make organic yogurt at home. I did use organic yogurt for my starters however (Stoneyfield Farms). I was eating a cup of Stoneyfield farms organic blueberry yogurt when I had my first bad reaction (tongue swelling, difficulty breathing). I suspected blueberries at first because I had eaten cheese earlier in that same day without any problem. I waited a week and then tested with some blueberries I had in my freezer and I didn't have a reaction. So I continued to avoid dairy until I accidently had some butter and my lips started to tingle and my tongue got puffy again. The butter was not organic--it was Land O Lakes, but I don't think that it matters. I tested a week later with some organic goat cheese and had the same reaction; so all dairy is out for me I'm afraid. I do agree with your theory in principle, however. Back when dairy just made my nose run a little bit and made my asthma act up, I did not have those symptoms nearly as often when I ate organic dairy or cultured dairy (yogurt, keifer, etc) so that's why I did orgainc as much as possible. Unfortuantely I couldn't afford to do organic butter (and a few other things) so maybe that little amount of non-organic stuff pushed my allergy over the edge.

[jenngolightly]

I am waiting on an appointment with an allergist at the end of the month and hopefully I can get an epipen then. Did you regular dr prescribe it? Maybe I need to call my doctors office and ask for a prescription over the phone? I would feel better about traveling if I had one.

I love Lara Bars. They are one of the things I carry in my emergency food bag and for traveling. I haven't found any flavors I can't have yet. Unforotunately, since they all contain nuts I cannot take them when I visit family due to the child with a nut allergy. That's a whole other challenge to going there, most of my travel food involves nuts or nut butter. The nut allergic child is also allergic to sunflower seeds, sesame and eggs. All these are things which I eat on a regular basis from almond milk to peanut butter to sesame oil I can't take with me.

Yes, my regular doc prescribed an epipen and an albuterol inhaler.

In addition to nuts, I'm allergic to many seeds, too. I'm thankful that I can still eat peanut butter - (peanuts are a legume). I can't even touch nuts because I'll break out into a rash and have a hard time breathing, so they can't be in my house. I have my own office and computer at work. I don't let anyone touch my keyboard without washing their hands first. I think we should all become neurotic when we have multiple food allergies. It's okay to be that way with your family and refuse to go. I'm not ready to travel yet. My work colleagues have gotten used to my food problems, but that's cuz I see them every day. I feel okay having guests come over (I don't make them wash their hands, but now that someone said that.... lol). But I don't know about traveling right now. I can't eat very many foods and I'm so scared that something will happen to me and I'll be sick the whole time... no fun for me or for them.

I'm anxious to see what you do.