Horrible Reaction & Thanksgiving Is Coming

[seaking]

I have been gluten free since july and I've done pretty good, I've had a few "mild" reactions, mainly from cross contaminations. I usually react within a few hours, and I get the stomach cramps, headache exhastion dh and all that but only the fatigue has lasted more than a few hours. So on sat night I was feeling tired & iratable, crampy ect, just thought it was PMS, but then I woke up at 2 am with dh, kept me up ALL night, all day sun I just fasted, but I still had dh, and then I got horrible headache and body aches, worse than I've ever had with the flu, and I was just shaking & crying. I finally took a couple benedryl & slept in the afternoon, then I ate before bed & I was up all night again. Mon I wasn't nearly as bad, just so tired and still crampy ect.

Anyway, I'm pretty sure it was a gluten reaction, I had some chili at wendy's that night which is usually fine, I eat it alot, but it tasted a little different, I think some "Helpful" person contaminated it.

I'm supposed to be going to my mother's for thanksgiving, & they're not too supportive, even though I have a Bro in law who is gluten-free too. I was really worried about getting another reaction like that, I can't take it, it was aweful, & I'm a single mom I can't afford to be that sick! I know I can bring my own gluten free stuff, that's not a problem, but my mom grinds her own wheat and makes home made wheat rolls right before dinner. I KNOW that's going to contaminate EVERYTHING in the house. I tried to talk to her but she didn't believe me that the reaction was that bad or that I could be so sensitive, she tends to think I'm a hypocondriac, or just generally mentally ill, she says the celiacs she knows don't have problems that extreme & aren't that sensitve, so I must have had a stomach bug instead, and besides, a gluten reaction would just be stomach stuff not the headache and joint aches, so that proves it wasn't gluten.... and she's a NURSE I'm so frustrated I'd like to hit her over the head with my gluten free cook books! I thought about just not going to thanksgiving, but it's hard enough being the first holidays since my dx and divorce, I just don't know what to do. I wanted to have it at my house & just have her bring the rolls from her house, but she won't hear of it, I even have a bigger house! any suggestions, or moral support? does anyone else get reactions that bad? did I just have a flu? I don't really think so but I've been wrong before.

Thanks

[gfgypsyqueen]

Hi Seaking,

I have terrible reactions too. I am very sensitive and so is my kid. It's a entire body reaction and it SUCKS! The residual reaction stuff lasts the week. My "mild" reactions involve terrible mood swings which last for days. So much fun!! I get contact reactions too. The full reaction has me dizzy, vommiting, passing out, along with the standard bowel and mood problems.

I have to say that having mom as a nurse is a double strike against you... She is medically based and this disease has a huge misunderstandings in the medical community. Family is notoriously hard on newly diagnosed Celiacs. She is either going to agree to listen to you and understand the problems, or she will take years to see changes in you and what a reaction really does to you. I would be very doubtful that you can change her mind in a few weeks before turkey day.

I know it is not what you want to do, but I would find other plans for turkey day. I would be so sick. Go to a dear friends house, have a few friends over for a quiet turkey day, or leave town. If you will be in town, stop by in the morning, say hello, be polite, wish everyone a happy turkey day and then leave long before the wheat and the rolls become an issue. Better yet, plan a short trip to someplace relaxing and tropical! Find a great deal online. Go alone or bring a friend. No turkey day issues and you have a great excuse not to be at moms.

Then start working on mom about xmas. Be factual and brief. Not open for discussion or argument. Do you have an official diagnosis of Celiacs? If not, get one. See Entero Labs. The people that argue about Celiacs cannot argue about a diagnosis. What the lab lied? There is no room for debate. You have an official diagnosis. This is your diet. This is how it works. These are the problems areas. This is what happens for a reaction. This is how long it takes for you to get over the reaction. You are single now and you cannot afford constant reactions or you will get fired. (I get massive brain fog, depression, and memory problems.)

FYI: My family has taken years to sort of grasp the idea of this diet and the other food allergies in the house. I answer questions but I don't preach about how many symptoms each of them have. I point out the changes in the Celiac child and how much better she is doing on gluten-free diet. The basic rule is they obey the house rules or they do not get the kids unsupervised. I don't make a fuss about it, I don't discuss the infraction. The kids are just not available for a visit unless I am available. Eventually they start to have an interest in the Celiac and food allergies. Eventually they come around and pay attention. But they always know that when we come over, no nuts at all and I will be bringing my own food. None bake that much so I don't have to worry about flour everywhere.

In the end, your health and your safety are your first priority. Take care of your self. Mom will eventually come around or you will find a better network of friends and support than family. Either way it will work out.

[JEM123]

I have been gluten free since july and I've done pretty good, I've had a few "mild" reactions, mainly from cross contaminations. I usually react within a few hours, and I get the stomach cramps, headache exhastion dh and all that but only the fatigue has lasted more than a few hours. So on sat night I was feeling tired & iratable, crampy ect, just thought it was PMS, but then I woke up at 2 am with dh, kept me up ALL night, all day sun I just fasted, but I still had dh, and then I got horrible headache and body aches, worse than I've ever had with the flu, and I was just shaking & crying. I finally took a couple benedryl & slept in the afternoon, then I ate before bed & I was up all night again. Mon I wasn't nearly as bad, just so tired and still crampy ect.

Anyway, I'm pretty sure it was a gluten reaction, I had some chili at wendy's that night which is usually fine, I eat it alot, but it tasted a little different, I think some "Helpful" person contaminated it.

I'm supposed to be going to my mother's for thanksgiving, & they're not too supportive, even though I have a Bro in law who is gluten-free too. I was really worried about getting another reaction like that, I can't take it, it was aweful, & I'm a single mom I can't afford to be that sick! I know I can bring my own gluten free stuff, that's not a problem, but my mom grinds her own wheat and makes home made wheat rolls right before dinner. I KNOW that's going to contaminate EVERYTHING in the house. I tried to talk to her but she didn't believe me that the reaction was that bad or that I could be so sensitive, she tends to think I'm a hypocondriac, or just generally mentally ill, she says the celiacs she knows don't have problems that extreme & aren't that sensitve, so I must have had a stomach bug instead, and besides, a gluten reaction would just be stomach stuff not the headache and joint aches, so that proves it wasn't gluten.... and she's a NURSE I'm so frustrated I'd like to hit her over the head with my gluten free cook books! I thought about just not going to thanksgiving, but it's hard enough being the first holidays since my dx and divorce, I just don't know what to do. I wanted to have it at my house & just have her bring the rolls from her house, but she won't hear of it, I even have a bigger house! any suggestions, or moral support? does anyone else get reactions that bad? did I just have a flu? I don't really think so but I've been wrong before.

Thanks

Hi,

I am also VERY sensitive to gluten and react horribly! My first signs are bone and muscle pain immediatley after coming in contact with gluten. I also get really bad brain fog and GI issues. These symptoms can last up to 7 days. I never eat gluten on purpose so when I do react it's from CC issues.

I agree with the previous poster...find somewhere else to go for Thanksgiving! When I first went gluten-free I would visit my mom's house and leave there glutened even if I had brought my own food. One day I put two and two together and even though she did not handle fluor or bake while I was there she would usually do it first thing in the morning before I got to her home. She even cleaned everything thoroughly before I got there.

I spoke to her about this and one Sunday she did not do any baking. Well lo and behold I was absolutely fine that day! She never bakes or uses flour when she knows that I am going to visit her. If the people in your life refuse to understand your disease then you need to hold your ground and take control of your life. This is about you...nobody else!

Good luck!

[seaking]

Thanks alot for the input, I'm glad I'm not alone in that reaction! I do have a diagnosis, I was a "silent" celiac for 17 years, with migraines, mood problems, hormone problems, fertility problems, weight problems, joint pain, and fatigue. I never had much in the way of gi problems beyond reflux & what could be atributed to having my galbladder out & not eating right. I was having trouble with my reflux & food getting stuck in my throat so my gp sent me for an egd to get my throat streached & make sure there was no tumor or anything & it came back with celiac disease. I continued in denial until I saw the gastro and got a positive blood test. So there's really no doubt about it. I was really shocked by the dx, it didn't help that my husband left the same week! But I've tried hard to be good at the diet, and for the most part I feel 1000x better & I've lost 50 lbs. I'm just really irratable with everything this week. I will try to find somewhere else to go, or maybe just not eat when I'm at my mom's I'm afraid anything I bring will be contaminated by the flour in the air. It's hard enough to not be able to eat all of my favorite gluteny foods anyway, but to go without and still get sick, it's like taking a recovering alchololic to a bar, making her watch everyone else drink without touching a drop and then she still gets stuck with the hangover & the dui in the morning, how fair is that?!! and yes I know lifes not fair, I'm just being GRUMPY today, Thanks

[Rya]

Wow can I relate. I am supposed to visit my father for Thanksgiving. His girlfriend is a former nurse and less than helpful. I even caught her trying to sneak gluten into my meals when I visited last, maybe to see if I would react? I think I started my gluten-free adventure more paranoid than most only because I'm majoring in nutrition and we have privvy to some personal horror stories from our clinical dietitian professors. However, even I did not suspect that touching a cookie and washing my hands and washing every single surface in sight (then of course chewing on my finger later) would gluten me. And I am supposed to be the expert counseling everyone soon. Wow?

Back to you, though. It is a hard thing to stand up for yourself and say this is what everyone in my life has to do for me and there are no two ways around it. However, I read in my medical nutrition therapy book (it probably has a good deal of truth to it but may not be applicable to every single Celiac, so take it as you will) that if you bounce on and off the diet for several years it becomes ineffective. NOW, I can't imagine that as many people that say they have glutened themselves that this happens quickly. It seems that it would take several years. Don't let this scare you, but it is good motivation to try to get your environment in control (easier said than done I know) so that within a year you can be gluten free. I have access to more experts, books, and research on this subject than most, and I have screwed it up time after time these last 6 months. But it's a learning process. And it is hard to tell your family even when they think that you are being bogus (my boyfriend is the only one that believes me only because he sees my stomach bloat time after time). Trust me, no amount of information from you will convince them. Seems to be how families work. So, either arrive early and take complete and utter control of the house - meaning no wheat rolls, mom, sorry, but i have these great gluten free rolls, try one?; or pack your own little dinner in your own little container with your own little utensils and don't let anyone touch it - in fact, leave it in the car until you are ready to eat; or don't attend.

As hard as it is and as much as the hypochondriac remarks suck, you are the most important one in this and you can't let them decide your health for you. Good luck!

[Joni63]

Thanks alot for the input, I'm glad I'm not alone in that reaction! I do have a diagnosis, I was a "silent" celiac for 17 years, with migraines, mood problems, hormone problems, fertility problems, weight problems, joint pain, and fatigue. I never had much in the way of gi problems beyond reflux & what could be atributed to having my galbladder out & not eating right. I was having trouble with my reflux & food getting stuck in my throat so my gp sent me for an egd to get my throat streached & make sure there was no tumor or anything & it came back with celiac disease. I continued in denial until I saw the gastro and got a positive blood test.

I'm sorry your having problems with your mother. I don't think some people can understand how serious the reactions can be. I also think you should find another place to go on Thanksgiving under the circumstances. It's not worth getting sick for days for one holiday.

I hope you find a solution to your situation that makes you happy. Maybe in time your mom will understand more about your symptoms and what you need. Good luck to you.

I also wanted to tell you that when I read your description of celiac, your symptoms sound very close to mine. I also had trouble with food getting stuck in my throat and swallowing. I've not had those symptoms since going gluten free, but didn't really think about them as being celiac ralated. Sometimes it would cause me to have panic attacks. My other symptoms were also vague and 'silent' for many years. I didn't realize so many of the ailments I had were related to celiac until I went gluten free. Very strange when I think about it.

[JNBunnie1]

I also wanted to tell you that when I read your description of celiac, your symptoms sound very close to mine. I also had trouble with food getting stuck in my throat and swallowing.

You know the scene in Finding Nemo where Marlin and Dory won't let themselves get swallowed by the gull and the gull has a fit? Maybe it was your bodies telling you 'bad food! bad food!' Just a lighthearted thought.

You can share my mom! Do you live in Ct?

[Joni63]

You know the scene in Finding Nemo where Marlin and Dory won't let themselves get swallowed by the gull and the gull has a fit? Maybe it was your bodies telling you 'bad food! bad food!' Just a lighthearted thought.

LOL! Yes, bad, bad food!