Looking For Some Others Who Understand What I'm Going Through... Any Support Please! :(

[Chibiehotaru]

Hello, group....

My name is Nora. I'm looking for others to connect with that can just listen and understand what I'm going through. I'd like to just share my story and hope I can find some sort of a kind ear because I feel extremely alone.

Last year about this time I began noticing I would become ill after eating lunch at work. It started off mild and not every day. I would wake up nauseated and sit on the toilet and some how my bowel movements became strange and unnormal and odd smelling. I didn't pay a whole lot of mind to what was going on. I had been a relatively healthy eater the year prior and I just convinced myself that my body just couldn't tolerate grease or preservatives anymore. One day at work my co-workers and I returned from lunch and I felt so sick by the time I began to call patients back. I sat in the restroom just sweating, shaking,vomiting and sitting on the toilet all at the same time. I was very weak by the time I got intonurgent care. The first doctor I saw thought I may have IBS. He gave me some medicine for bentyl and zofran and sent me home. I looked up IBS and it kinda sounded like what I had. I even went and saw my regular MD and he told me the same thing. I went through a series of blood and stool tests for parasites, etc... and nothing came back. He told me to eat plain things like toast, crackers, slices of cheese... and I followedhis advice only to just become more ill and lose more weight. After several visits with him he finally referred me to GI where I was tested for celiac and the doctor called me and told me I had high levels and I was testing positive for celiac. I made an appointment for endoscopy but it wasn't for 6 weeks away. I immediately began gluten free and had a little relief. I ate a big plate of chinese food the night before going in and I my stomach felt like I had eaten a box of lit sparklers. My biopsys came back negative and the GI told me to continue to eat gluten free. It has been 7 months and with the elimination of both dairy and caffeine I have felt much better. I still have occassional abdominal pain and partially digested stool here and there but I feel much better.

However, since going gluten free I have felt very isolated from family and friends and when I'm at a social event I feel embarrassed when I'm refusing food and people ask me silly questions.... "what's gluten?" "Maybe if you just eat a little at a time your body will get used to it again." Or "are you sure it's not just in your head?" I feel alone. I ask myself why me and why did my body just stop accepting foods I've eaten my whole life? I have a two and four-year-old and I'm afraid to let them drink off my cup or kiss me in fear of getting sick.

Yesterday at work I had a bad headache. I normally only take tylenol buy the only thing that was available was ibuprofen. In less than an hour I began to feel my stomach cramp and twist. My body began to shake and I felt as if my heart would pop out of my chest. To the toilet! I excused myself from my doctor and co workers. I cried while sitting on the toilet. I should've googled ibprofen and celiac disease... I didn't and I was paying for it. I sat there for a good amount of time... I took my bentyl and just waited for all the strange stool to come out. It was a long commute home and I tried to get ahold of my fiance but was unable to reach him. I called his brother and told him what had happened and that I needed him to call me back. Several hours passed and I was a little better. Feeling more weak.... and humiliated at this point. When him and the kids got home he just asked in a cold voice "well did you need to go to the hospital?" I told him no and he said he had received my message and I was hurt he didn't call or come home to check on me. He simply told me he was tired of me being sick. I told him I was tired of being sick!! We have had a good 5 year relationship. This has beenn hard on both of us. Reading labels, not going out to eat, I always tell him to be careful about cross-contaminating.

I feel like a burden to my fiance and co-workers. I try and just focus on my babies to keep me going. They need a mom and I need to be careful so I can be there for as long as possible. My spirit is broken and I feel very low.... anyone out there?

[ravenwoodglass]

Welcome. First off ((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))

I think there are many of us who have found the diagnosis and diet to be a bit isolating at first. So much of our socializing is around food and the fear of a reaction can keep us from joining in until we learn that we can keep ourselves safe. Many of us were also ill for an extended period of time before diagnosis and found that 'friends' and family can have a hard time understanding and coping with our illness and diagnosis. 

There are lifestyle changes we need to make that do affect our loved ones. It is hard for a significant other, for example, to understand why now they need to brush their teeth before they can kiss you. It takes some time to learn why we can't just go into a restaurant and order food the 'looks safe'. Why we are all of a sudden so obsessive about crumbs etc. 

There is much we can do to help ourselves be less isolated. Carry safe foods with you at all times. Snack bars, fruits, chocolate etc so that when they bring in donuts at work we have something yummy to pop in our mouths. Do an online search for gluten free restaurants in your area. I was surprised how many there were when I looked. Sometimes it is better to just eat before you go and reach for that snack bag and just enjoy the company when a group wants to go someplace there are no safe options.

It does take some time to heal and for those around us to get used to what we have to do to live safely. Do be sure to read the newbie 101 thread at the top of the coping section and ask any more questions you need to ask. 

I hope you are feeling better soon. Oh and don't forget to get your little ones screened and to tell your family they all should be tested whether they think they have symptoms or not. 

[cristiana]

Hi Nora

 

Welcome to the Forum.  Further to that great advice above, I just wanted to tell you so sorry you found out about Ibuprofen the hard way - I did too.  It took a few weeks for my stomach to stop feeling sore.  I don't say that to discourage you, I'm just saying in case it happens and you are concerned.

 

I have a couple of coeliac friends here in the UK who have had such an easy run with their celiac disease since diagnosis whereas I seem to have had one thing after another and it seems the doctors find my test results so fascinating I am always being sent for more!  So discouraging!

 

But this is such a good place to visit when you need that extra help, there are so many understanding people here who will know exactly what you are going through.  You will pick up friends here you can offload with and it will make such a difference being able to do that, with people who really understand.   For myself I try to visit here when I am feeling low, rather than offload on my poor husband all the time and it makes the world of a difference.  For our families I guess it is just as disappointing if we don't bounce back healthwise; if we can't eat with them at a restaurant at the drop of a hat.  But this website will really equip you to deal with these difficulties.  I have found it really inspiring to read people's stories and see how people get to grips with this thing.

 

Just try to take one day at a time at the moment.

 

xx

[hrenee101]

I'm sorry that you feel so alone. I know how you feel. My sister says she understands and then she says lets go out to eat, or we are in town and she gets hungry and just can't wait to get home. I sometimes feel like I'm a burden because she can go out and eat anywhere and I'm always scared to eat out. If i'm in town and she knows it I will get a text message to take her food to work. I don't mind taking my sister food but when she ask me to go get food for her knowing that I can't eat anything from where she wants food just irritates me that she thinks that's ok or to assume that if we are out together that we are automatically going out for lunch or dinner. We have to keep taking it one day at a time

[icelandgirl]

You've come to the right place! ((((Hugs))))!

I know the isolated feeling that you talk about and the frustration as well. These things will get better. As cristiana said, coming on here to vent is a great stress relief and takes some of the pressure off your SO. It's a huge change for everyone. And the stress of someone being sick is a test for a relationship to be sure. Keep doing on here and letting it out, you will soon see that you are not alone.

Also...I agree with bring food with you to the occasions where others will be eating and you can't partake on what they are having. Tell people that even the tiniest amount of gluten makes you incredibly sick so no thank you. And then eat what you brought and enjoy the company.

Also, try to do something good for you to relieve stress. A nice long walk, a hot Epsom salt bath...something that feels good to you. Take care of you so that you can take care of your littles.

I hope that coming on here has helped and encouraged you.

[1desperateladysaved]

I began my trek about 3 years ago in much the same way as you.  It is so overwhelming emotionally, physically, and spiritually.  My family did not understand, thought I made things up, or maybe I wanted to be super-health-lady.  time went by and they watched what happened to me.  Whereas my body had displayed mostly inward symptoms, as I recovered my family  began to notice outward symptoms.  I had rashes and sometimes (since it varied) they could notice I was swollen up.  One leg was often much larger around then the other.  My young ones noticed my face turned bright red if I ate the wrong thing.  .  I recall thinking that sometimes I had to let my family think ill of me; I just kept trying to do what was right in caring for them as best I could and for my own health.  Things aren't perfect, but things are so much better.  Sometimes, my family outthinks me in caring for me.  If things are not good now, please hang in there.  I hope you can get some down time as the body really works hard to recover.

[Jonesy3449]

Hi. As you see you are not alone at all. This is my first day on the forum but I share a lot of your frustration. I had had gut problems my entire life and my wife convinced me to get it checked out. Luckily my doc caugh on quick and my wife has been cool about it and is a lot of help. I have ran into a lot of problems at work though.

I am a firefighter and we have most of our meals together and alternate who cooks. Going to work and trying to explain what gluten is, what gluten is in, and why I can't have it was an enormous challenge. Cross contamination has been my biggest obstacle and I am at the point where I am bringing all my own food from home and keeping it in multiple layers of isolation just so my gut box doesn't try and explode when I'm in the back of the ambulance.

I didn't really understand it when my doctor said that having celiac and being gluten free isn't just a diet change. It's a lifestyle change. As much as you want to pull your hair out and are determined to live in a bubble, just remember that there is hope. Hope might be in the form of gluten-free Bob's red mill chocolate cake mix or a home made hard cider, but it is there.

[Chibiehotaru]

Thank you to ALL who replied. It means so much to hear from others who have been in the same boat as myself. It has been 10 days since being glutened and I am finally feeling somewhat "normal" after the long week of stomach pain and odd restroom issues. I felt bummed out last week going throw the motions as my body tried to rid itself of that icky ibuprofen. I just decided to pick my head up and keep on moving forward with my gluten-free life. After 7 months gluten-free, I know it's possible to feel better as long as I'm ALWAYS careful. Even if I've bought that product before, I still check the label to make sure. Lol... and I joke to myself really if I was going to gluten myself why on a stupid ibuprofen and not on a good piece of pizza or slice of cake???      

[pone]

Hello, group....

My name is Nora. I'm looking for others to connect with that can just listen and understand what I'm going through. I'd like to just share my story and hope I can find some sort of a kind ear because I feel extremely alone.

Last year about this time I began noticing I would become ill after eating lunch at work. It started off mild and not every day. I would wake up nauseated and sit on the toilet and some how my bowel movements became strange and unnormal and odd smelling. I didn't pay a whole lot of mind to what was going on. I had been a relatively healthy eater the year prior and I just convinced myself that my body just couldn't tolerate grease or preservatives anymore. One day at work my co-workers and I returned from lunch and I felt so sick by the time I began to call patients back. I sat in the restroom just sweating, shaking,vomiting and sitting on the toilet all at the same time. I was very weak by the time I got intonurgent care. The first doctor I saw thought I may have IBS. He gave me some medicine for bentyl and zofran and sent me home. I looked up IBS and it kinda sounded like what I had. I even went and saw my regular MD and he told me the same thing. I went through a series of blood and stool tests for parasites, etc... and nothing came back. He told me to eat plain things like toast, crackers, slices of cheese... and I followedhis advice only to just become more ill and lose more weight. After several visits with him he finally referred me to GI where I was tested for celiac and the doctor called me and told me I had high levels and I was testing positive for celiac. I made an appointment for endoscopy but it wasn't for 6 weeks away. I immediately began gluten free and had a little relief. I ate a big plate of chinese food the night before going in and I my stomach felt like I had eaten a box of lit sparklers. My biopsys came back negative and the GI told me to continue to eat gluten free. It has been 7 months and with the elimination of both dairy and caffeine I have felt much better. I still have occassional abdominal pain and partially digested stool here and there but I feel much better.

However, since going gluten free I have felt very isolated from family and friends and when I'm at a social event I feel embarrassed when I'm refusing food and people ask me silly questions.... "what's gluten?" "Maybe if you just eat a little at a time your body will get used to it again." Or "are you sure it's not just in your head?" I feel alone. I ask myself why me and why did my body just stop accepting foods I've eaten my whole life? I have a two and four-year-old and I'm afraid to let them drink off my cup or kiss me in fear of getting sick.

Yesterday at work I had a bad headache. I normally only take tylenol buy the only thing that was available was ibuprofen. In less than an hour I began to feel my stomach cramp and twist. My body began to shake and I felt as if my heart would pop out of my chest. To the toilet! I excused myself from my doctor and co workers. I cried while sitting on the toilet. I should've googled ibprofen and celiac disease... I didn't and I was paying for it. I sat there for a good amount of time... I took my bentyl and just waited for all the strange stool to come out. It was a long commute home and I tried to get ahold of my fiance but was unable to reach him. I called his brother and told him what had happened and that I needed him to call me back. Several hours passed and I was a little better. Feeling more weak.... and humiliated at this point. When him and the kids got home he just asked in a cold voice "well did you need to go to the hospital?" I told him no and he said he had received my message and I was hurt he didn't call or come home to check on me. He simply told me he was tired of me being sick. I told him I was tired of being sick!! We have had a good 5 year relationship. This has beenn hard on both of us. Reading labels, not going out to eat, I always tell him to be careful about cross-contaminating.

I feel like a burden to my fiance and co-workers. I try and just focus on my babies to keep me going. They need a mom and I need to be careful so I can be there for as long as possible. My spirit is broken and I feel very low.... anyone out there?

 

I think it is awful to not have the support of your loved one when you are suffering from a disease.  If he is a "only the strong survive" type I guess that is food for thought.

 

If it makes you feel any better, I started out thinking I had celiac, and ended up finding it was a gluten intolerance but combined unfortunately with an extremely poor absorption of carbohydrate.  I have to avoid almost all starches (e.g., all grains, potatoes, yams, rice...the whole shebang) and I also have to avoid sucrose.   I do okay on simple fruits like berries that are mostly separate monosaccharides glucose and fructose, and I avoid fruits like bananas that have high sucrose content.

 

You might want to read the book "Breaking the Vicious Cycle" which is the main popular book discussing the specific carbohydrate diet.  I think a lot of people with gluten intolerance resolve about 60% of their symptoms by coming off wheat and they never understand how to address the remaining 40% through detailed understanding of carbohydrates.

[BlessedMommy]

Hi Nora, welcome to the forum!

 

I understand completely the issue with small kids. My kids are 8, 5, and 2. The 2 year old will put her hands all over my face and even try to play with my teeth!

 

I found that the best way to save my sanity is to either limit their food choices or plan to feed them gluten at a time when I can plan one of their baths around it. When they've had a full bath and changed their clothes, I feel like they've been sufficiently de-glutenized.

[notme]

I ask myself why me and why did my body just stop accepting foods I've eaten my whole life?

 

((((((((((((hugs)))))))))))))  celiac is genetic, so, you were born this way.  it usually presents itself after something like a serious illness or pregnancy <that's when i started noticing symptoms after i gave birth to my son) or some sort of trigger.  but the symptoms are subtle and sneaky.  a little indigestion here, a headache there, etc.  until one day you feel like complete crap.  you have all my sympathy, my dear, i was misdiagnosed for too many years.  they didn't start paying attention (IBS as a diagnosis is a joke) until it almost killed me.   i tell you what:  if people had intestines that you could see (i know, gross lolz) it would be alot easier to convince them it's medically necessary for us to eat this way.  

 

on the up side, your babies are young!  you are diagnosed, therefore on your way to feeling better and having more energy to spend with your lil darlings    i raised 4 in a fog, lolz - i'm still sorting out things i have let go for years just for lack of energy to deal with them.  once your fiance gets used to the idea that this is forever, hopefully he will be helpful.  my husband is my biggest advocate (he's my hero) it makes him happy that i'm not sick all the time anymore.  

 

you've come to the right place - we've all been where you're at.  deep breaths and read the newbie thread.  any questions you have just use the search function or ask away.  good luck and feel better!  

[Jason-1]

Hey Nora,

Welcome to the forum!

Generally when going to a family or friend event, I tend to bring my own snacks. Even though everyone I know has learned on what gluten is...I just don't trust them to not cross contaminate and they understand that and try their best to cater to the needs of gluten free.

At home cooking, I would recommend getting a separate set of cooking tools you can dedicate to gluten free... just to take an extra step to prevent cross contamination.

Also you can check out Find Me Gluten Free, it's a website that finds gluten free restaurants...though I would always read the reviews because sometimes they might not be dedicated gluten free.

This is a great community for you to be in, very helpful and very kind!

[MycasMommy]

I have read your original post several times. It makes me really sad. Not that you are sick.  I mean, that part is really horrible.  The sad part is your husbands treatment of the things you're going through. How do you feel about counseling?  This is a big deal. Things are so much easier when your home team is rooting for you and watching out for you. You do it for them all of the time and it is so important that they are there for you through this. If you are thinking about this route, make sure you look through the references people have left about the counselors on the internet. Make sure you find someone who is of the right mind to help you guys.

 

   I just had a long conversation with my boyfriend again last night.  My teen will be tested soon but we are both pretty sure she has it. Without me even asking, he said that if she does, he is going to go whole hog and eat gluten free with both of us. He even said he would go grain free 100% (I cant eat grains either). I do not want him doing that because last time he tried, when it was just me sick, he lost all of his body fat and he has none to spare. He is adamant that we will find a way for it to work. We've decided that if her tests come back positive, we will go gluten free 100% and keep the other gluten free grains in the side cabinet where we currently keep his gluten stuff. THIS SUPPORT WAS GIVEN and not asked for.  You deserve this too. My boyfriend has seen, many many times, how very sick I get. He holds my head over the toilet and holds me when it hurts. He makes sure I know it is not my fault and that I was born this way. He can see it in my face when I feel like a burden over it and smooths the way for me.  He always checks to make sure I have taken all of my vitamins ( I always do but he asks anyway). When we do go somewhere, it is HE who asks our hosts about the menu and what to bring etc.  YOU deserve this. THIS makes things so much easier. You will BOTH be happier. You will start to recover. It is a team effort.

 

   Until that time.. if it ever comes, please come here. Everyone here understands how hard this is. Your quality of life matters. Even if your husband remains this way, come here and find help. I wish I could hug you up. You can do this, you WILL get better. The curve is steep but you are not alone.

 

 

ETA: If you had high levels but the biopsy was negative, I would suggest finding your OWN  GI, one that deals with Celiacs. It is worth the exorbitant out of pocket expense.