Has Anyone Else Gone Crazy Over This?

[LuvMoosic4life]

I just need to get some thoughts off my chest with people who understand....family just doesnt, especially with self diagnosis...

I find myself thinking about gluten intolerance way too much, and my mind goes in circles. Sometimes I wonder if maybe it is all in my head. I read the symptoms of celiacs on here and although I've been through my share of being sick, I havent had it half as bad as some people. I'm the type of person that will keep pushing themselves and put a mask on pain. I've become very good at taking pain since I was younger. The past few years have been a roller coaster ride for me. As i sit here I often wonder if I have taken the gluten thing too far, if maybe I have become OCD because it seems my friends have all backed away from me ( but then this could all be in my head, a tendancy I have in all parts of life).

I started out just by avoiding bread, pasta and obvuios gluten things, I even found that white bread didnt bother me as much as wheat....but that was before I knew about gluten. I did feel a great amount better gluten-light, but I was still getting gas problems and bloating, just not as bad. When I learned more about what gluten actually is, I decided to just drop it altogether, read every label, and strictly go gluten-free, avoid CC and all......the results were amazing, and since then I dont want to even touch the evil substance.

I keep wondering when I am going to get sick again, but then realize (knock on wood) that it has been a record for me, that since going gluten-free I havent gotten sick in 4 months. back in my gluten days, before I started the whole gluten-free thing, it just expected to crash and burn every couple of months (usually with a sinus infection or some other viral or bacterial infection that left me bed ridden, along with horrible D and gas). I almost at times wanted to get sick because I felt so run down, and being sick would mean I would have an excuse to lay around and do nothing, relax, and eat nothing but chicken soup, gingerale and applesauce. isnt this horrible? I mean there were times where I would be puking and going D at the same time!!!! but its true... I would get sick, recover, get better and then the cycle would start all over again, only my getting sick seemed to start happening more frequently, like down to once a month and more intense each time.

My main accute problem on gluten is just REALLY bad gas and bloating, to the point of sometimes having to lay down in pain, not wanting to go out anywhere.....then D, which has been a common occurance for me my whole life. I thought having D 2 or 3 times a week was normal.....then I got to college and realized my thoughts and daily activities were all revolved around my digestive system and my gas problem. I would make plans ahead of time according to when I knew I would be really bloated with gas ( a lot of my problems were 10 times worse befoe my period). I would avoid eating before going out or certain events, only to have my symptoms sneak up on me after having a beer or eating at a resturant with friends, I wondered how every other person could just go out and not have to worry about gas, bloating,D, C and cramps, it made me so angry, and it wasnt something I could just openly talk about b/c it is commonly an embarrassing topic.........and then I wondered if maybe everyone is like this and is just hiding it really well like me?? it couldnt be....

It took me 7 years of this constant battle to have it sink into my head that what I was going through was not normal. When I learned about celiac disease I wanted to get tested, but my current stautus with my insurance and not having a doc at the time didnt allow me, so I started the gluten-free diet alone. I felt as if it was the greatest thing ever to come my way, like by eating gluten-free foods I was curing myself, clensing my body with positive and light, I just felt so great, it had to be too good to be true....and then I found out the down side : people not being supportive, the lack of awareness about celiac. I also felt that in a way, I was meant to find out about this disease so that I could spread awareness to people ......but then I think WHY ME? my life always seems to be 10 times harder than everyone else, and then this came along.

A few months later, today. I am not feeling so great again. My digestive system feels out of wack and C is not my friend....but I'm still not anywhere near my old self..... I've had ups and downs since going gluten-free. I know it is the best thing for me, but then there are days where I wonder. Even though I had some pretty bad days when I was on gluten, there were days were I had no sypmtoms at all. There are also times where I challenged myself with gluten since going gluten-free and didn feel effects, but then there were times I got really sick....I just wish I knew people in person that have gone what I went through....the interent and this web site are great, but it would be nice to at least have a friend in real life to talk to and go out, do normal things without constant questions about what i can and cannot eat....this is really hard to go through when you are alone in the sense of the people surrounding you . I know I'm not alone inthe world with this.....but yeah....you get my point.....if you read this far

[jerseyangel]

back in my gluten days, before I started the whole gluten-free thing, it just expected to crash and burn every couple of months (usually with a sinus infection or some other viral or bacterial infection that left me bed ridden, along with horrible D and gas). I almost at times wanted to get sick because I felt so run down, and being sick would mean I would have an excuse to lay around and do nothing, relax, and eat nothing but chicken soup, gingerale and applesauce.

I'll tell you one thing, I could have written this myself! I completely understand what you're saying--but you said it yourself: you haven't been sick for 4 months! That's great and should tell you something.

After I was diagnosed my recovery was a bit of a roller coaster ride for the first 2 years. Even after 3+ years, I still have stomach problems from time to time, although I can always trace it back to some cross contamination.

Take care, try to relax--I know it's hard when you're waiting for the other shoe to drop.

Remember, we're here for you

[gfpaperdoll]

One suggestion, you could contact your local support group.

wishing you better heath...

[LuvMoosic4life]

One suggestion, you could contact your local support group.

wishing you better heath...

I think I might do that. it's just such a drive to get to where they meet. I wasnt sure if I need an official diagnosis to be involved...

[brizzo]

Msau22, read my "signature" at the bottom this page.....specifically the part about the "new test".

That's all you need........

As far as feeling "alone" in this ...you aren't....how many members are on this board?????... u see my point.

If you feel that people just "don't understand"...pardon my french .....**** em'!

It's like this........I can eat 100 lbs of chocolate in one sitting, and not gain a pound. Some people look at one drop of chocolate and gain 100lbs! It's just the way their chemistry is. If people hate me for this, then piss on them! LOL!!

Same with the celiac issue. U Be U!!!!! It's who your best at.

[YoloGx]

I agree, the social part can be really hard. It really teaches you who your friends are (and the ones who are not)!).But even that in a way is good to really know since it could save you years of time.

Recently for instance I was going to date this guy and he freaked when he found out how severe my "allergies" could be since it might impact some or his personal habits. Some men feel it blunts their style. Like the previous guy said, f**** them! It saved me time from getting involved with someone who was basically selfish under his sophisticated hip exterior.

The main thing is it is so very worth it to be healthy rather than ill and out of it all the time.

Bea

[frec]

It takes a while for celiac intestinal damage to heal. You probably are also still dealing with some nutritional issues--you, uh, lost food for a long time, and it is difficult to find a balanced diet for a while.

(You also might consider whether dairy is a problem--people who are gluten intolerant often can't tolerate dairy or soy--yeah, happy advice there.) Remember, you were sick for seven years--give yourself a chance.

Are you taking any vitamin D3? It's a common deficiency, especially with gluten intolerance, and it helps with mood, immune system, calcium absorption--all kinds of important things.

The only celiac I know here in town is ten years old (!) so I know what you mean about wanting someone to talk to. Thank goodness for this forum.

[pele]

You are not alone. I could have written most of what you say. We are surrounded by people with "indigestion" who take OTC meds and avoid things like raw onion or apples because it upsets them. It took me forever to figure out my digestion was not normal. Commonplace, maybe, since there are so many gluten intolerant gluten eaters out there, but not normal.

I could go off on a long rant about why I think people eat wheat despite mounting evidence that it poisons a lot of folks, but I will save that for a rainy day.

[rrgf]

I know exactly how you feel. It is so frustrating when you feel as though no one understands you, or you feel like people think you are going crazy/ want attention for always talking about what you can and cant eat. My dad constantly comes home with pizza and other foods i cant at for dinner and is shocked when i say "dad i cant eat that". its frustrating that he wont just google this condition and get a grasp on what i can eat, or at-least listen when i constantly ramble about my recent doctors advice.

I think that even though you may not have had the proper testing, you have celiacs! I honestly have cried thinking about some of the things i will never be able to eat again. However, its probably the best thing to happen to me. I now WANT to cook, which has never been the case. I am interested in finding new gluten free delicious foods.

One thing I would recommend is buying Shauna James Ahearns book "Gluten Free Girl". This book is incredible and just like you knew she had celiacs before her test results came in. I got the book for like $8.00 used on amazon, so i would say grab a copy.

As for your symptoms even when you are eating gluten free....you may still be ingesting some gluten and not now it. I have only been on the diet for about a month and I can instantly tell when i ate gluten and didnt realize it. I get tired and a migraine, so you may want to look at that. I'm sure you've explored this website, and probably more thoroughly than me since you have been gluten conscious for 4 months, but check out the safe and unsafe lists provided. I just printed them out and plan on bringing them everywhere so i know exactly what i can and cant eat.

Well good luck with your celiac discovery and i wish you good health. Even if celiacs isnt the case a gluten free diet is still good for you, so while you wait for an opportunity to get tested, hang in there.

[LuvMoosic4life]

thanks everyone

It takes a while for celiac intestinal damage to heal.

If this is true, does anyone think that damage would still show up in a biopsy after 4 months gluten-free? I know there is the factor that damage could be anywhere in the intestine, and not where they take the sample.....but I am also in the dilema to get tested. I am seeing a g.i doc in a few weeks, which I dunno if it is really worth it, but I do have other problems (probably related to celiac) that I think I should see a g.i for anyways, testing or no testing.. plus there is a history of digestive cancers in myf amily.

[cindy lou]

I feel as if I just met myself reading all of your posts! I am still roller-coastering. I wonder if it ends, but I *think* I see light at the end of the tunnel- for now- and I'm hoping that it is not an oncoming train You are not alone- I keep telling other people that yet not seeking support myself. Reading these posts is very therapeutic- look at it this way, we save on psychologists and gluten allergy/intolerance can be treated with food, real food, not surgery or some pill.... for all of that I am very thankful. You have friends here, you are certainly NOT alone. In fact, reading your post throughout this thread I thought I was reading my own thoughts!

Oh, and brizzo- your chocolate comment is great. Love it!

[slmprofesseur]

I could have written your original post- years of digestive troubles. I too did self diagnosis...

I just went back to work and there is gluten everywhere!!! I went to a staff meeting today and there was doughnuts, yogurt (not Gluten-free) and fruit. I will not succumb to the gluten invasion in the teachers lounge this year! Some colleagues don't talk to me, but I am glad I didn't waste time with them.

Unfortunately, I don't have contact with my family. They thought it was all in my head. They said I didn't eat enough. (I should preface this with the fact that I am the only one with allergies- they took me to a seafood restaurant with a diagnosed anaphalactic (sp?) shellfish allergy. I don't expect them to understand and I realize its their way or the highway.

This site has been great! Hang in there, eventually you'll meet people who are real friends that do care.

Just as Cindi Lou said you don't need a pill or expensive monthly medications.

[GFinDC]

Well, I have sure been there with the long nights in pain, on the floor, the bed or anywhere. I used to lay in bed all night rolling from side to side. It seemed to me like it was never going to end really. But it did, when I went gluten-free. I am 9 months into the diet and still learning things to avoid, and sometimes learning the hard way. My latest lesson is no Rice Dream milk, and no yeast. Yeast bothers me.

What the hey, it is much better to have an idea what the problem is and have a way to do something about it also. Certainly less frustrating than being sick all the time with no idea why or what to do. And I am slowly learning to cook real food, that doesn't smell of microwaves even!