Oh, I'm New To This.

[aimeez]

I went to my doctor this morning thinking the results of my blood test for a full thyroid workup were going to reveal some lifelong joy of popping t3 supplement pills. My doctor, having a gluten intolerance herself, tested me for it as well. She said, "blahblahblah... good news and bad news. Your thyroid looks great, but you have a gluten allergy."

First of all, I've been rather lost as to whether there is a difference between a gluten allergy or an intolerance. Nothing I've read seems to be definitive. I know allergy and intolerance are different, but when it comes to gluten it seems it doesn't make much of a difference... again I say, based on what I've been able to find on the net. (I will use the word interchangeably throughout so if someone can correct me, please do. )

Additionally, I was completely unprepared for news like that. I was getting used to the idea of popping pills for the rest of my life, but now I cannot figure out which is worse. A lifetime of pill popping or a diet I have to rearrange my life around. I've read so much in the last 12 hours about gluten-free diets, recipes, and lives. I apologize if I'm rambling, but how the heck do I cope with this? I've read through a lot of the forum posts and topics and I'm completely at a loss.

I have a lot of symptoms that really don't seem to have anything to do with gluten intolerance/allergy at all. My sister was diagnosed with the same condition about 4 years ago and her symptoms are much, much different than mine. Although, I'm quite positive that as any other condition it can manifest in thousands, maybe millions of different ways. I, personally, have terrible skin (acne, uncontrollable oiliness, dryness, etc.), mood disorders, high stress, brittle nails, excess body fat that simply won't go away, lack of energy and pretty much every single symptom that could have been linked to hypothyroidism.

I'm done with my little story now... so if I'm in the wrong place, too wordy, or in some way offensive, please let me know. Any help or support I can get would just be splendid because I really just want to deal with this thing head on, and do it right. My sister almost entirely ignores her allergy and I would rather not deal with the possible, long-term consequences of that.

[mushroom]

I went to my doctor this morning thinking the results of my blood test for a full thyroid workup were going to reveal some lifelong joy of popping t3 supplement pills. My doctor, having a gluten intolerance herself, tested me for it as well. She said, "blahblahblah... good news and bad news. Your thyroid looks great, but you have a gluten allergy."

First of all, I've been rather lost as to whether there is a difference between a gluten allergy or an intolerance. Nothing I've read seems to be definitive. I know allergy and intolerance are different, but when it comes to gluten it seems it doesn't make much of a difference... again I say, based on what I've been able to find on the net. (I will use the word interchangeably throughout so if someone can correct me, please do. )

Additionally, I was completely unprepared for news like that. I was getting used to the idea of popping pills for the rest of my life, but now I cannot figure out which is worse. A lifetime of pill popping or a diet I have to rearrange my life around. I've read so much in the last 12 hours about gluten-free diets, recipes, and lives. I apologize if I'm rambling, but how the heck do I cope with this? I've read through a lot of the forum posts and topics and I'm completely at a loss.

I have a lot of symptoms that really don't seem to have anything to do with gluten intolerance/allergy at all. My sister was diagnosed with the same condition about 4 years ago and her symptoms are much, much different than mine. Although, I'm quite positive that as any other condition it can manifest in thousands, maybe millions of different ways. I, personally, have terrible skin (acne, uncontrollable oiliness, dryness, etc.), mood disorders, high stress, brittle nails, excess body fat that simply won't go away, lack of energy and pretty much every single symptom that could have been linked to hypothyroidism.

I'm done with my little story now... so if I'm in the wrong place, too wordy, or in some way offensive, please let me know. Any help or support I can get would just be splendid because I really just want to deal with this thing head on, and do it right. My sister almost entirely ignores her allergy and I would rather not deal with the possible, long-term consequences of that.

Hi Aimeez, and welcome to the forum. You will find a lot of "aimees" (the french kind) here on the forum. I like your attitude.

Obviously, one of the first things you have found out is that gluten intolerance of any kind presents itself in many different ways, which makes it difficult to diagnose. And you have also learned that whether it is celiac disease or gluten intolerance or wheat allergy, the treatment is pretty much the same--eat no gluten! While the wheat allergy people can eat rye and barley, the really big problem in foods today is wheat, and you are about to find out just how many places it can hide.

It sounds like your diagnosis came out of the blue for you. For most of us here it is a total relief to learn that there is really a physical reason for our symptoms that have been variously described as stress, eating disorder, irritable bowel syndrome, fibromyalgia, psychiatric problems (head cases!), etc., etc., ad nauseum.

Yes, at first eating gluten free can seem pretty overwhelming, but there are 28,000 plus posters here who have learned to do it successfully, and you will too. There is no denying it will make some changes in your life, and you may rant and rave against it (that is a lot of what this place is about) but along with the negative ones there are so many positive ones. Think of your skin problems clearing up, your mood improving, your stress levels decreasing, nails getting stronger, and losing that weight that just won't seem to go away. Then add in an enormous burst of energy and well-being and clear-headedness, and you will find a new you emerging from out of that gluten load. Yes, your symptoms are totally different from mine but we all find ourselves feeling like new people when we abandon what has been harming us.

I have two sisters, one of whom is also an undiagnosed celiac, the other like yours who is symptomatic but entirely ignores the whole thing and says "I just get on with it." I hope what she is getting "on with" is not the RA or psoriasis I have, or other horrible side effects of ignoring gluten intolerance. As for the terms, those who have been diagnosed as "celiac" often seem to consider themselves different from we undiagnosed people and those who are gluten intolerant or have a wheat allergy. But in reality, our ships have all sunk and we are all sharing the same lifeboat, so in my mind at least it does not matter what you call it , we are all bobbing on the same ocean and our rescue boat is the gluten free diet.

You will find an enormous amount of help available here; I see you have been browsing around already. If there is any subject you are interested in, just google it and loads of information will come up. If you can't find an answer to your question, ask it in your own topic like you have here. There are people on the forum who can answer almost any question you might have. This is a fabulous resource and do make use of it.

Good luck on your gluten free journey.

[flourgirl]

Hi Aimeez! You're certainly not the first to be totally sandbagged by this sort of diagnosis. I got mine on a "post card" in the mail from my gastro. I had never heard the word before "Celiac"? What IS that? After the initial shock I went directly to the web....then to the bookstore. Later I learned that my doc was looking for cancer! In light of that, I was totally relieved. Then I had the rollercoaster ride of emotion.....finally settled into "I can do this because I have to do this". I was at the point of thinking that I was dying before diagnosis, and so happy to find I had something that I could control. I do wish I had gotten a diagnosis when I was young, my doctors knew there was something that was making my body attack itself.....but all I got was much head scratching! I could have avoided many years of ill health, and possibly long-term damage.

There are several good books out there as well as lots of great info. here! You'll find your way through trial and error...we all do. You'll make mistakes (again, we all do), but the great news is that you can look forward to much better health than before, avoid lots of possible health issues in the future. I'm willing to bet that issues will resolve that you thought were just "normal for you". Happens to many of us Good luck to you with the diet and with your health!

[Miss Abi]

Hiya. I am finding it difficult too...stumbled across this forum the other week and am finding it really useful, so hopefully you will too. It's such a relief to know I am not the only one! I find it hard at times to accept that this gluten-free diet is forever! That I can never have an amazing pizza again etc etc. I have never really had symptoms before so I feel like I am being punished... I know in the long run it's for the best and in a way I am lucky, but I don't feel that at the moment. My mum is coeliac but has no symptoms, so she carries on with a fairly normal diet and doesn't understand how I feel sometimes. She's even accused me of being a bit paranoid and obsessed. My brothers both suffer with wheat-based foods, such as bread, but refuse to have a blood test...and although one is a doctor, neither really understand what being a coeliac means. So at times I have felt alone. I have skin-type reactions eg. hives, bruised skin, insect-looking-bites, swollen skin, achy limbs etc. All tend to be on my left hand side (weird!). Occasionally I have a reaction but cannot work out why (because I am super careful). So it's just a case of riding it out. I am trying to see this as a learning process - work out what works, what I like, what the benefits of gluten-free are... I'll get there but it's taking ages and sometimes I get really down.

Does anyone have any tips re coping with and accepting their diagnosis? Cheers

[aimeez]

Well, I've got to say that knowing that other people are just as completely overwhelmed as I am is great for me... not so much for the group of us as a whole. >.<

I am feeling a TON better about this today. I carried around a bag of beef jerky and I snacked on it, had some grilled chicken patties, and my last Chinese meal for a while.

I had actually just come off a really bad case of what I assume was food poisoning and I couldn't eat for 3 days without getting sick. After that illness, for my own purposes, I wanted to cut out breads just to see if the carbs were causing my weight gain and also do a little bit of detoxing... keep in mind this was BEFORE my diagnosis. lol I had nothing but salad, chicken, and jerky. My energy levels were absolutely SKY HIGH. I haven't had that much energy since middleschool, maybe elementary school, and I'm 21 now.

Earlier today, my sister and I went out for a kind of "Goodbye Chinese" meal because I love it so much, but I'm cutting it out of the diet (for now). After that meal, I felt TERRIBLE. All those symptoms I hated (gassiness, bloating, indigestion, headache, lethargy) hit me like a truck. That sounds like a really terrible thing, but it really helped me to realize that in just ONE meal... which is normally all I eat in a day... ONE meal made the difference. I'm still dealing with the symptoms now. This meal was at about 3pm... so 12 hours of nasty symptoms from just ONE meal. THAT is enough to make this gluten free diet all completely worth it.

It's still completely overwhelming at this point, but I'm so glad now that I KNOW just how much this diet is going to do for me and any other celiac who sticks to it. And, sadly, if I hadn't had that little bit of food poisoning and decided to detox. I definitely wouldn't be so motivated or excited to get started.

Maybe I can convince my sister to join me in this diet now that she knows just what can come of it. I think a lot of people just don't think that any of their symptoms can possibly be related. I know I didn't.

Thanks all of you for the support, and I'm really glad I found you guys. Any tip/input is welcome, and you can bet I'll be beeboppin around the forum quite a bit. *Support Group Hug*

[tarnalberry]

Welcome to the board.

I'm sorry your diagnosis came so suddenly and unexpectedly, but glad that you know what the problem is.

I know that it seems overwhelming, daunting, confusing as all heck, and probably more than a little aggravating right now, but the diet will get easier. Not in a week, and maybe not in a month, but with practice.

One of the reasons it's hard is just because wheat is a habit. It's a habit for our whole culture. It's not that wheat is a natural thing to eat (I'm not saying it isn't either, no discussion here about natural or not), it's just something we habitually do eat. Other cultures *don't* habitually eat wheat (because it doesn't grow well in the area. (Not that those cultures are not now getting more wheat... Thanks to global food trading...)

Anywho... Why does that matter? Because habits are choices! Ok, they become unconscious, 'second-nature', ingrained, unthinking choices, but we can get back to thinking about them! And, after thinking about them for a while, we can retrain our brain to *new* habits (like, not eating wheat, and checking labels). Heck, at this point, I have apparently trained my coworkers to be in the habit of checking food labels for me before offering me food.

This board is a great resource for those days when you feel "well, darnit! I haven't had chinese food in a month - I want some!" We won't tell you to not have Chinese food, we'll tell you to go to PF Changs and get gluten free chinese food, or give you a recipe to make your own gluten free chinese food at home.

It's also a great general resource for venting over "the stupid stuff". See someone eating something you used to love (oh... pain au chocolat... /sigh), and want to shed a tear, and then get angry or even more sad that you felt like or did cry over food? Well, we can all relate to some degree or another, and we're here to share that with you. Because it's *not* stupid. It's a grieving process. You're losing something that was a regular, integral part of your life. It's healthy to grieve it, and that grief goes in cycles.

But you will find, over time, the best way for you to do the gluten free diet. For some, it includes finding the right off-the-shelf store items, for some the right specialty gluten free items, for some just whole foods for the most part, and of course every combination and permutation in between. It takes some time to figure out what's right for you - and adjust to changing that when circumstances in life change and you need a different solution.

[steff38]

I am also new to this board/ celiac way of life. I feel that I can manage my food choice after learning what is good vs. bad. i had a great dinner at PF Changs (gluten free menu) and found a lot of gluten-free items at the store. It has only been 1 week for me, so there is still a lot to learn...any suggestions or help would be welcomed!!!!