guppymom

My husband and I are very different in many many ways...we have butted heads over so many issues so often, some major and some minor. I used to expend soooo much energy and work my brain and whole life into a frenzy over these things that out of survival I had to learn to let go. I can't force him to do or to be anything, as i know you know, and I give my thoughts and feelings in a non-threatening way and leave it go. I just let it go. I often wonder if i will feel compassion for him if he continues in ways that I feel will bring him certain heartache, but i have decided to wait and cross that bridge when it happens. He isn't, of course, abusing any substance or into anything immoral, in which case it would be a different story...then it would be the line in the sand or i'm gone. But he has relationship issues and does not deal with them wisely and is causing damage that he does not see and refuses to believe in. I feel sorrow watching this, but other than offer gentle guidance, because he becomes very pigheaded if he feels manipulated, I cannot live his life for him. I cannot make his choices for him, and I will not carry the full burden of the sorrow that he will feel later. But I really do understand what you are struggling with, as I feel a certain amount of resentment that the pain will be mine also, something that i did not do and was not responsible for. I just have to let it go as best I can and hope and pray for the best, or the strength to deal with the situation that may present itself later.

Not much help at all. I'm sorry. I sympathize though. Have a hug and a squeeze and know that we're all here for you.

Teresa

I have found that steak or ribs or roast make me feel quite ill, same with my daughter. Not sure why, so i find the posts re: those interesting. I do get sick everytime i have rootbeer, regardless of the brand. maybe the caramel color? I usually know within 1/2 hour if I'm in trouble, sometimes within minutes. Then all I do is hunker down and pray for it to be quick.

I hope you're able to find out what it was, and when you do, PLEASE let us know.

wow

too wierd.

Yesterday I was fighting vertigo all day. I hadn't eaten much because i hadn't felt hungry at all, but I was falling over and trying to correct myself when I felt like falling over but wasn't actually moving at all. It was very strange and I came onto the board today to ask this very question...

so no answers from me, but I 2nd the question.

Teresa

Wow, are we all having a time? I was asked to make dinner for an elderly, ill couple tonight, so I whipped a frozen veggie lasagne into the oven...one that we used to love, even though it made us sick. sigh. So it's cooking and it's all smelling so wonderful and I take it to their home, and THEY AREN'T HOME! They ditched me. So home it came and husband is going to eat it tonight. At the same table as the rest of us. Wanna bet there'll be drool over the top of it?

Remember my post about my daughter going to this day camp thing and how cool it was 'cause they were going to make food for her especially? ha. "it's too expensive to make non-gluten food, so we're having subs, she can eat the stuff on it and just leave the bread."

argh

I didn't even bother to explain about the condiments and the meats and etc etc etc.

i'm just sending food with her that she can eat. But good gosh. I thought we'd made some progress.

I do understand that my myriad of symptoms did seem a bit unreal. I didn't blame my doctor for harboring some suspicion that I was hypochondriac. But I sat there and told him that, right up front when I saw the eyes roll, and told him that I honestly was ill and didn't know why. I had already been eliminating groups of foods/additives from my diet in an effort to be well, and he was aware of that. I was battling so many infections that we could not get cleared up, or once they were a new one would spring up immediately somewhere else. It was so scary! I also have a lifelong issue with anxiety, which i read is often part/parcel with celiac, so I feel pretty sure that is where his "oh you read about it" comment came from. But he's never treated me for anxiety since I already have a great program from Dr Weekes that I follow. He was willing to do the blood test since my daughter tested positive, but decided to send me for a colonoscopy since I was going to need one at 40 anyway(he IS concerned since my mom died of intestinal cancer). ? I wasn't even at 39 yet then, so I asked if he didn't mean an endoscopy, and he didn't see much reason for that, but I could talk to the gastro about it and let him decided which he would do, or I could also go back on gluten to get the positive result from the blood test. That's when I just knew that he didn't understand and wasn't feeling much inclined to understand, or trust my considerations of what was going on.

So honestly, the bottom line is, in this country at least, it seems to me, that this disease is just not being taught about enough! How do we change that? How can we nudge the medical community to seek more information? How do we help school nurses look and listen for clues? What is the best approach to take, one that will meet with positive results(although i am sure minute at the beginning) rather than appearing to head bash and turn them away from what we are trying to say?

Do any of you belong to local support groups? I don't think there is one in my area...is that a possible avenue? Is there a national support group, other than this forum/site, where we could join together and put something together that might make a difference? I don't understand all the ins/outs of that, but there just might be something that we can do! Anyone have any ideas?

I'd love to see the day when my daughters can go back to summer camps or youth programs and not have to go through the huge deal of making prior arrangements for bringing/preparing/storing their own food because the dieticians and medical personnel will know what celiac is. Not that we mind that, just like we've talked about before, people don't understand and so it becomes SUCH A HUGE ISSUE!!!

Good news is, there's a day-long fun thing that the older girl is going to this saturday, and the leaders remembered enough to ask me what she can/can't have and they will make sure that a few of the salads are gluten-free for her! WOW. And I, in my great gratitude, offered to make one to send along for the group to eat. I guess that's a start.

Teresa

So, it seems to me that maybe there can be a way to encourage our physician's(those that are still speaking to theirs)to consider celiac disease as more of a front-line answer rather than a last resort. My own doc did say to me, "oh, so this is something you read about somewhere and now you think you have it?"...but my daughter'd ped was wonderful. He always is. He listens to people, he blows the clock, takes his time, and follows instinct also. He has NEVER sent me out of his room hopeless. He is a gold standard also, as I suspect you are Sara. I appreciate this man and am eternally grateful to him. As for my own doctor, I am trying to switch to an internist in the clinic who is of the same ilk as the ped. That I can't help. I don't trust him with my best interests anymore. I was so sick all last fall, not just gastro stuff, my whole immune system was crashing and he got to where he would just roll his eyes when he saw who was in his office again. He is not the general doctor public, I know that.

And a good friend of mine, that one that i think is celiac, she's a PA. But celiac is NOT something that she considers a viable diagnosis. She is much more oriented towards treat the symptom.

My question then, for all of you medically involved celiacs, what can we do? As a group, as individuals...knowing the profession and the possibilities for change, and taming our cynical, hurt and outraged selves, is there anything, anyway that we can take our hellish experiences and turn them for good? I really don't feel noble, so don't hiss at me, but if there is someone that I can help NOT lose years of living by raising awareness, then I want to do it. Talking about it to people I see suffering is not helping, they all turn to the medical profession for diagnosis.

Deb, I'm so sorry for your hurt. It is valid and I am sorry. You have suffered so much, and I appreciate your point of view as a spouse recovering from a disease you don't have yourself. It makes me sad I can't get my years back, but man, i'm so glad my daughter got diagnosed at 16, rather than 39, or 50, or 62...and my little one at 6, rather than 16.

Teresa

I was really worried about my youngest daughter(6) because her appetite is decreased and it didn't seem right to me...but she's is finally gaining weight! She is little, only 40 lbs, so we've always been of the mindset to keep quality foods going in to help her. The thing is, DUH, I think, is that now the food she's eating is actually doing something other than run right through. She's not as hungry because it fills her up, it fills the need. So, we have been adjusting our brains to deal with her new body needs. And my eldest daughter(17) has always been slim, not skinny but no wasted anything on her, and has always eaten like a horse. For the first time she is noticing a nice little soft pad on her body! She is also eating less, naturally, and we had to get used to her new way of being also.

We ran the gamut with doctors for my daughter...but she didn't fit the "profile" so celiac disease was not considered. we talked about crohn's and ulcers and all the rest but then her doc just pulled it out of the hat and we love him forever. I've had these symptoms since i was little(i'm 39 now and was diagnosed with an ulcer at 8)and everything but celiac disease was considered. My mom was on Medicare and sick for years and years, but alot of Medicare patients are like state assisted patients, they don't get the care they need. My mother's doctor(not speaking in generalities here) saw my mom as "old-lady-on-medicare-don't-waste-energy", and so she died.

And call it what you will, i do blame this doctor. My mother had to beg for a colonoscopy even though the danged tumour was big enough that you could feel it from the outside. Her oncologist wrote up the doctor since it was his firm belief that if it had been caught even 6 months prior we could have had a fighting chance. Instead, she died 6 weeks later.

Good point about the floss/toothepast/mouth rinse. It is all supposed to be "safe" if it's manufactured in the USA, but I checked with the company anyway...not bashing any labelling issues here! Just paranoid and trying to get all those poisons away from me.

It seems like alot of us were diagnosed last fall...I know that for the most part i'm now finally okay with the potty, but it did take about 3 months before everything calmed down so that I can go out on a shopping trip without planning ahead for potty stopping spots. And I have also learned the other things I can't handle. I was disheartened to read, at first, about the other trigger foods living along with the celiac disease. But, taking a practical view has helped me alot. I wouldn't stick a grenade in my shoe before I put it on, etc. I know that seems like it's pretty far-fetched, but it is as practical as that for me. Food is tougher because it is so emotional for us, it's survival, but there are alot of things available that weren't even a few years ago. I can find most creature comforts if I search around long enough(okay, not all the same, but close enough that i can delude myself enough to get through the rough spot!)

This board helps me stay sane. I'm sorry if I've ever come across as bashing doctors, it certainly wasn't about that. Unfortunately it is true that there are alot of doctors who still think celiac disease is only thin people, scandinavian people, short people...they are learning and that is great.

I haven't read anyone forcing or trying to intimidate anyone else either.

I guess I feel that if we have been through the first rough time of diagnosis and have found certain spots not to walk on because they fell through for us, then we should be able to share that experience so that the people following along don't step on the false spot...they can get further ahead faster and not waste the same time that we did. If that's being a pushy quack or a doctor basher, then I guess that is what it is.

And yes, if you feel things are out of line, you should be reporting those things to the moderator.

My daughter was diagnosed by blood test. She had barium scans and all of that, but not an endo, he didn't feel it was necessary since she was positive on the serum test. The latest newsletter article actually mentioned that in that doctor's findings the blood test usually only comes back positive AFTER major damage has been being done in the intestines.

I belong to a huge health system here in NW washington, and their big thing right now is endo endo endo. They are waaaaaay behind in knowledge as far as celiac disease is concerned. It was just a few months ago that they were still running on the idea that all people with celiac disease were emaciated and wasted. I've found doctors to be very cavalier about it.

So, it really is, i think in most cases, up to us to do what we know we need to do.

I found out that dairy and soy are total issues for me. I kind of knew about the dairy, but the soy was a new one for me. I can't handle any butter, no puddings, even the safe ones, no peanut butter either, although peanuts are okay. I totally agree with keeping a food diary. There were alot of "safe" foods listed by the doctor that diagnosed us, but we found them to not be safe for us at all, major reactions. And definitely watch the vitamins or any other supplements you are taking, they have been my downfall more than any other thing. Spices are often coated with flour to prevent them from caking, so we've had to make lots of phone calls to companies. Also, watch for "natural flavors" "natural colors".

I kind of started this out by eating nothing but cheese puffs(from the health store) and water, so it was pretty easy for me to start nailing the culprits as they came back into my diet.

OH! And something that I've noticed, for myself, is that the bean flours keep me in the bathroom ALOT. I've tried working them in gradually, but it doesn't help. So, I've put the beans away, just can't handle them.

"I let them know that Celiacs who keep ingesting gluten have a 40% or more higher chance of getting cancer in the bowel, and that Celiacs that cheat by eating one meal with gluten once a year increase their death rate 6 times! One meal a year eating pizza is not worth increasing your death rate 6 times. Once that sinks in, people are usually more understanding."

Very well put. I started out telling people about that and have forgotten how effective it is. I'm going to start doing that again.

Teresa

I just want to caution you about viewing endoscopy as the definitive means of diagnosing celiac disease. The latest newsletter contains a very detailed and informative article concerning this very matter. It blows holes in pretty much all of current traditional medicine's thinking as far as what will accurately diagnosis celiac disease.

I have had, for years, localized abdominal pain, in about the same area that you described. I always mentioned it and asked about it when I went in for my exams and there was never an answer. I'm sure that we've all experienced that blank look doctors offer when they have absolutely no idea what you are talking about and blow it off with an off-hand answer. I was told it was muscular, or maybe just something I ate(duh), take pepto-bismal, do more crunches, that kind of answer. I absolutely could not have anyone touch my abdomen without getting sick to my stomache and feeling dizzy.

It's almost completely gone now.

Every day I see more improvement in my health, and every day I feel I take another step towards better living.

Like I've posted somewhere else, I absolutely refuse to partake in a gluten challenge, but may do genetic testing when feasible. I had an endoscopy done a few years ago and got hold of that report...it was for stomache pain, and they whirled around and didn't find anything obvious to their eyes so they labeled it reflux and slammed me on Zantac. What the report actually said was that the villi were blunted, but there were no obvious lesions.

Not everyone's villi will be blunted, it will depend at what point and in what specific area damage may be occurring.

Good luck!

Teresa

A few nights ago my husband made one of those comments, those "i can't believe that just a little bit like that would hurt" comments. And after I had bragged about how good he's been. Must have had his radar one. Anyway,he said that it was never bad like that before, how come all of a sudden, and i reminded him about how much pain i had been in constantly. He did remember after that brief reminder, and then i asked him if it took someone with a flower allergy putting their whole face in a bunch of flowers to trigger a reaction, or if all it took was one pollen particle to begin the process...he agreed that for a person with a sensitivity, it only took a microscopic item to cause a problem. I rested my case AFTER I pointed out that this is not an allergy, but that the reaction is actually my body attacking itself when it senses the gluten protein, no matter how small the amount.

It reminds me of trying to accurately describe labor to someone who's never experienced it(sorry, guys, it's just such a vivid female thing).

And I do find that I have to force a tough shell or I want to cry alot. People can be really thoughtless and lacking in compassion.

Absolutely! I felt that someone was dragging me back into a pit of complete pain and misery. I just sat and cried and felt so trapped! If I'd been thinking clearly I probably would have reached that conclusion faster on my own, but man! The panic!!!

No kidding! The fewer doctors and appointments needed, YAHOO!

Has anyone here used the kid-friendly books that are available? I've seen a few advertised on the site, written for children and aimed at helping them cope with it all, but before I make the leap I am wondering if they are good ones.

I ordered some goodies from the gluten-free mall, and they came today! TOO COOL! We're excited. There's a yellow cake mix, my almost 17 yr old's favorite(i want to be able to make one for her bday), and these great cookies... from Enjoy Life. Great! No gluten, wheat, eggs, dairy, soy, nuts of any kind, casein, corn, potato or yeast. Kind of makes you wonder what IS in them! Applesauce, sorghum flour, apple/grape/pear juice, vanilla, xantham gum and safflower oil...oh yeah, it also says rosemary extract and natural dextrin. Anyway, I had one and no heartburn, no reflux! I think it's because there's no soy, no eggs and no dairy.

My friend has chronic cholitis. She refuses surgery so she's in pain pretty constantly. I've dropped a few hints about trying to eliminate gluten to see if it would help, but nothing yet. At least the acupuncture seems to offer her some relief.

We take weekly sacrament, bread and water. I spoke with my Bishop and he was very understanding. We aren't the first celiacs in our congregation, so I owe alot of thanks to those who were here before, and laid all the ground work for us. I bake our own little loaf of gluten-free bread, and the priests break and bless it with the rest of the congregations bread. Ours is kept seperate in little cups so we don't have to deal with contamination, which would probably not affect my girls but would have me over the cliff. They make a note of where we are sitting and make sure that our bread is on the correct tray. The rest of the congregation knows that it is for us and so far we haven't had anyone accidentally take ours.

Our diagnosis came through my eldest daughter, who had intense stomache pain that kept going undiagnosed. I have had gi issues for years and years and finally got to the point where i couldn't go anywhere without knowing where the bathrooms were. Her doctor was really tired one day, put his head against the wall and said, "tell me all". Now, he had just diagnosed a celiac young man a few weeks before, so he was in the right frame of mind. My daughter never had the runs, has always been very thin although she eats everything in sight, but had extreme fatigue, headaches, joint pain(which she'd been in pt for). The serum test came back positive for her, so we talked more and he questioned me for some time about my lifelong symptoms. I'd been trying to be healthier, so I had really upped the whole grains, like the pyramid says to do, and had been getting sicker and sicker. We talked about my youngest daughter, who would display classic food allergy type reactions and become very hyper and irritable. We talked about my mom, who died from intestinal cancer 6 years ago and had gi problems for many many years and was misdiagnosed all over the place. He told me to start us all on a gluten-free diet immediately and if i felt better after a couple of weeks, to go back in and get tested from my own doctor. We have been, except for the occasional total accidents, gluten-free from that day, Oct 30th 2003. Of course I started to feel better almost instantly, and when I went in for my own test it of course came back negative. Well, it was low positive, which my doctor refused to acknowledge as positive. I don't fit the profile in the obvious respects. I am overweight, and that there is the first eliminator. He told me I could begin eating gluten foods again and then retake the test, and I cried. I talked to my gyn, who is a wonderful doctor, and she looked at me and said "you don't need his stupid test result to tell you what you already know". My health has improved a million percent. 5 months ago I honestly felt that I was dying and helpless. I am regaining health, and hope, and able to put into perspective all the questions. I have answers and know that I will gain more as time goes on. I have lost weight, and have not had one regret for missing gluten. Oh sure, like I've posted other places, I miss the ease of food prep. I miss Pizza Hut. But man. The pain. I don't miss the pain!!!!!

I have a good friend right now who is celiac, i'm sure of it. She is a Physician's Assistant, and refuses to entertain the idea. Okay. I see her being treated for IBS, acid reflux, fibromyalgia, joint pain, migraines, SADD, insomnia...I guess I just don't understand why it seems reasonable to take a pill for each individual issue, and have them not work, but not to just stop consuming gluten for a trial period. My husband says that they just don't hurt badly enough yet.

I wish my mum could've gotten a diagnosis. She died way too early for me.

No kidding. My youngest daughter, she's 6, was feeling pretty woosey tonight, saw an ad for good old traditional sugar cookies, and just got frustrated. Yep. I told her she's right, it's crummy, but even though ours are different, not the same, at least they don't make us sick anymore. Well, didn't quite cut it, so we just sat and talked about what we miss...deep dish pizza, Subway sandwiches, yellow cake(my older girl's fave treat)...and then we did start remembering how sick we always felt, awful, couldn't move, didn't want to do anything...it helped. And then we made chicken tacos with corn tortillas.

I had someone start a discussion with me about trying acupuncture. She has a condition that is also auto-immune, and she has seen great results in her health by doing this acupuncture. I just looked at her for a moment, trying to remember why this was not making sense to me, and then I reminded her that I have the key in my hands already...i don't eat gluten! It might be inconvenient, it might feel limiting sometimes, but I don't have to keep searching. I've got the answer, and I have to manage it. But the best part was the reminder to me that it works.

I can't believe I waited so long to join this forum. I too am finding that I cry much more easily and feel alot "woosier" than i used to, although I physically feel so much better. I also can't eat soy or dairy(except cheddar cheese) and beans have been making me feel so lousy, it was good to read that about the beans. I'm going to check mine also.

It is hard to go places now, to social gatherings. My daughter, who is 17, is getting quite a bit of flack from adult leaders who just don't get it. I've told them about celiac disease, told them that she cannot eat these things and that gluten is in so many things that she has to be very careful, but they still harass her if she isn't eating because she knows she'll be really ill if she does. She tries to remind them and they all do the "a little won't hurt" thing, but it does hurt. I accidentally took the wrong calcium pill a few weeks ago and thought I was going to die. I sat in the chair crying because it hurt so bad again and I couldn't understand why since I'd been so careful... I thought to look at the calcium pills and the 2nd ingredient was maltodextrin, which I seem to react quite violently to. Relief, but frustration.

Oh well.

Really, even though I'm whining, I do feel alot better. It was good to read on the site that there has been found a definitive link between celiac disease and depression. My anxiety is gone alot but the depression seems worse.

My daughters and I were all diagnosed last fall, and this is the one area that my eldest daughter and I still struggle. I get terribly tired, not sleepy so that it is debilitating, but tired. Before the diagnosis i'd get so sleepy that I absolutely could NOT stay awake. But I was hoping that the fatigue would ease a bit more.

I'm also finding it hard to kick a sugar habit that has crept up since then. It makes the fatigue worse, I know, and just generally makes one feel icky. So, that's my big battle now.

And the occasional "wahhhh" since eating is more complicated still. We're getting more used to the new menu, but I get tired of having to cook everything all the time! I miss opening a can or ordering take-out! Of course, it's all okay since I don't have to live in the bathrooms or groaning in the chair anymore!