hafadai43

Thank you so much! I will contact her

I know exactly how you feel. I have headaches all the time too, although I have celiac disease and have been gluten-free since 2003. I'm only 22 and have felt like a total guinea pig the past few months as the doctors do test after test on me to eliminate certain things. So much of my money is being wasted on these tests and procedures that don't turn up anything. I have constant bloating and most of the time irregular bowel movements. I don't have any gluten contamination, so that's not it. First my family Dr. said it's not IBS because the bloating does not go away after a BM. Then the gastroenterologist that did my colonoscopy said that's not necessarily true. I just could have not totally emptied my colon. So....what in the world am I supposed to think and believe from these people? I suggested allergen testing for at least soy, dairy, corn...the common stuff....but my family Dr. said the tests "are expensive and inconclusive". She suggested an "elimination diet" instead. Well...I've tried it and I can't tell a difference no matter what I eliminate...I could be so messed up inside that taking it out for a little while wouldn't help. Who knows. So like you, I have felt like I'm on a wild goose chase with Dr.'s that may not really be listening to me.

I'm so sorry you are struggling...hang in there and try to keep hope that you will figure it out. I know it's tough....but we've gotta hang onto something don't we?

I have been gluten free for four and a half years. I have been careful! My symptoms (mostly bloating that NEVER goes away and irregular bm's, almost constant fatigue and feelings of weakness) have not been relieved. Needless to say it's really frustrating me. I have been getting test after test and procedure after procedure done searching for answers. I have been tested for deficiencies and malnutrition and now I'm on TONS of iron each day among all the other vitamins I already took daily without fail. I have had an ultrasound done to look for tumors or cysts--they only found a very small uterine fibroid, nothing to worry about. I've had my bone density checked, I got tested for gluten contamination--negative, I had a colonoscopy (I am only 22) and they found not much of anything, nothing to explain my symptoms. I'm going to suggest to my doctor, for the second time, that I have allergen testing. I tried to do a food diary for over a month and could find no real pattern or specific food that caused my symptoms. I tried cutting out dairy, then soy....not much of a difference. I have had so many blood tests it's ridiculous...no answers!

My real question is....could it possibly be refractory sprue? I know it's rare and I could be way off....but has anyone else been diagnosed with it? If so...how did you feel? What were your symptoms? I am in need of some real direction and I have been doing research like crazy trying to find some answers of my own to bring with me to the Dr. when I go back on the 12th.... Can anyone help me?

I had an absolutely delicious salad dressing at a restaurant recently....it had balsamic vinegar. I read it's made from grapes....so it's gluen free right? I just want to be sure so I don't keep eating it and for some reason it's not gluten free.

I have been taking the same type of Calcium supplement for a long time. It's also got added vit. D...it's the Spring Valley brand at wal-mart. Well, recent health issues has finally made something click in my head and I checked the ingredients of my supplements. Well...it's got maltodextrin. I've heard different things on maltodextrin as far as whether it's allowed or not. Does anyone know for sure? I want to find out so I know whether I need to find a different brand or not. If this has been contaminating me everyday twice a day...it would explain a lot. But if not, then I'll have to keep searching. Can anyone tell me whether maltodextrin is gluten-free or not?

I go to the doctor this Wednesday to get a bone density scan and to check up with my doctor on everything (recent blood tests, adding phosphorus and LOTS of iron in supplument form, etc.). I will be talking to her more about the bloating. I will bring up some of the suggestions all of you gave me, so thank you! I'm going to ask to be tested for at least dairy, corn, and soy allergies. It stinks when you take such good care of yourself and you still feel like poo. I think God gives Celiac Disease to all the strong people It takes a lot of patience and strength and will to get through every day life at times.

This morning I woke up and felt wonderful! I got up even though my son hadn't woken me up yet and I exercised. It felt great. I took all of my supplements, went shopping with my son, went to the park, and when I came home, still feeling pretty good, I laid my son down for a nap and began making my first meal of the day. (With my iron supplements, I have to wait at least an hour to eat). I had bean salad wraps consisting of corn tortillas, black beans, a red pepper, hellmann's mayo (it's gluten free! I called), lime juice and lettuce. It tasted wonderful and very soon after....DUM DUM DUUUMMMMM! (Doom-souding music there) I got bloated. There goes a good chunk of my good feeling. I know I shouldn't get so down about it...but it's incredibly frustrating. I have trained myself over the years to keep my stomach flexed at all times to make it much less noticeable...so I have great ab muscles...but sometimes I just want to let go and not look pregnant. I know you all can understand, and I am sorry you go through it as well.

So many uncertainties when dealing with one's gut. So many exceptions to every single rule. You try to deal, but can never live a "normal" life again. The difficult search to cure the bloating, upset stomach, etc. is well worth the effort if it helps us live a better life.

thanks everyone!

Although Hellman's Mayo has vinegar....I read in a gluten-free book that it is gluten-free. Does anyone know if this is true?

I got my results today from my lab work. Calcium is fine, but phosphorus and iron are low. This means I still need the bone density xray. My doc is putting me on supplements, so hopefully that will relieve my headaches, fatigue, and irritability. As far as my bloating and whatnot, I have spoken with my husband and laid down new rules to help keep the contamination at a minimum. I appreciate all of the support and suggestions you all have given me. Thank you!

Thank you all for the suggestions, I greatly appreciate them!

Your regular doctor can order the repeat Ttg tests for you, she should also be running a check of your B12, ferritin, iron, and folate at a minimum to check and see if your are absorbing nutrients yet.

Those are the lab results I am waiting on. I got them done last Wednesday, so hopefully they call me soon! They're also testing for Calcium intake. I am supposed to have a bone density xray in a couple weeks to check for bone loss.

Just to be safe, have you seen a gynecologist and had things checked out there? Bloat can be indicative of other things.

Well, I had an ultrasound done a couple weeks ago...ovarian cysts and cervical cancer run in my immediate family. But, they didn't find anything except for a small uterine fybroid, which my doctor said wouldn't be the source of my bloating. I was definitely glad to rule out that stuff, although it puts us not much closer to the answer. I'm glad I'm not a doctor...searches like this for the source of the problem and cause of symptoms for many people would drive my nuts!

My grandmother recently told me she read in the paper (she lives in Texas) that Kroger's Private Selection line of foods is supposed to start making health foods and gluten-free foods! This is so exciting. I hope that they will be totally gluten-free though, and not processed in a facility with wheat. We shall see! Just thought I would let everyone know. It might be awhile before the products come out, but keep your eyes open Kroger shoppers!

I live in Lebabon, Indiana...it's just about a half hour or so northwest of Indianapolis. I am looking for a great support group fairly close to home. If anyone lives near me or knows of any support groups that would be close, please let me know!!!

I know exactly how you feel! I am bloated all the time even though totally gluten-free, so I'm in the process of figuring it out with my doctor. On my really bad days I will be really faint and will start to black out EVERY single time I get up from a chair. When I'm having days like these I also feel a lot of pressure in my head and a horrible headache. Do you have any other symptoms that go along with the bloating and light-headedness?

are you having your Ttg levels tested on a regular basis. this would be a really good way to know whether or not you are getting cross contamination.

No, I don't have it checked regularly. I'm thinking I didn't go to a very good gastroenterologist to be diagnosed. Though I am thankful he figured out most of my problem. But I have been having problems ever since, and when I went back after six months, I told him I still have diarrhea and such, and he just said it was IBS and gave me some meds that he said to take 'as needed'. I haven't seen him since. He never said to come back regularly for any reasons. I know that some celiacs get check ups on things and I haven't. Now I've got a whirlwind of health problems (mostly general so it's difficult to know what is causing it) and I don't really know what to do. My life and finances (because of the expensive bills to come) are in the hands of my current family doctor. There is a good gastroenterologist at the same hospital she will send me to if I need to go, but right now she's just running so many tests. She hasn't suggested testing for other food allergies yet, so when they call with my recent lab results I think I'm going to suggest it myself. I think (and hope) that is all it is and it's nothing more serious.

I don't drink cows milk, i drink soy milk. Cows milk upsets my stomach to no end. But cheese doesn't make my stomach hurt, and I eat a lot of cheese. Is it possible that it is still bothering my gut, causing the bloating, but doesn't really hurt? I would hate to cut out cheese...It's one of my favorite things. I guess it could be useful to try to eliminate it for awhile. Are there any good cheese alternatives out there? I've looked at some dairy free cheese once but it had oats or something in it. In a perfect world it would be easy to find foods that don't kill us!

I have been gluten-free for four years but I still am very bloated ALL the time!!!! For a young woman who wants to look good, this can be devastating. I have trained myself over the years to keep my stomach constantly flexed. I work out and have nice muscles, but I still bloat. I have recently lost a bunch of weight even though I am not cheating on my diet. Although I am not underweight just yet, if it continues I will be very soon.

So my question, does anyone still bloat even after being on the gluten-free for awhile? My doctor doesn't think it is Irritable Bowel Syndrome since the bloating is not relieved after a bowel movement. We are in the process of trying to figure out my general symptoms such as bloating, constant fatigue, weight loss, etc. Many tests have been done, but no significant results just yet. Has anyone else experienced this? Could it be celiac?

Hello! I know it's too late to be involved in the Pitch in, since it was two months ago, but I am hoping you will read this! I was diagnosed with Celiac Disease four years ago and have never been to a support group. I live in Lebanon, IN and am looking for a good support group to finally be involved in. I am finally trying to take complete control of my life now that I am married and have a little one to care for and am still have many health problems. It is difficult to take care of them and our house and work three 12 hour shifts a week while feeling terrible. Perhaps having a support group will help me getting more ideas and information to make my life a little better. So please, if you read this, send me an e-mail if you know of a good support group around Indianapolis or even closer to Lebanon (north-west of Indy). I would greatly appreciate it!

Thank you!

Rachel

My email: hafadai43@yahoo.com

Nice to meet another Celiac named Rachel! As far as I know, I do ok with corn. However, I have been gluten-free for four years after I was diagnosed with Celiac, and to this day I still have symptoms as well. How bad they are comes and goes. Right now I am in a really bad spot. I am in the process of all sorts of tests because I feel so sick and tired that it's difficult to function. I am considering some allergen testing. My sister-in-law (another Rachel) just got some done. She has terrible acid reflux but was still having lots of problems even on her meds. She found out she was allergic to tomatoes and cantelope (a member of the ragweed family) but she is not allergic to ragweed. Strange huh? After eliminating these things, she feels much better. Perhaps you should consider allergen testing. I'm sure they can test for a corn allergy, among many other common food allergies. You might be surprised at the results. A couple of my cousins are allergic to crazy things like corn, eggs, and many other things you would never think about.

I want you to know you're not alone. I understand how frustrating it is to go through life feeling like poo even though you're trying so hard to take good care of yourself. It is good you're doing your own research, you're taking control of your life. Kudos to you! I am sorry you have been having problems, but you will get it all figured out if you keep researching and confide in a good doctor to help you on the search. Good luck!

Rachel

Thank you so much for the replies. I plan to make some changes to help cut down on my exposure, and it shouldn't inconvenience my family too much. I already have my own toaster and a designated pan for my husband's baked food and pretty much everything else we cook is gluten-free. So I will just try feeding my son more gluten free food rather than "death" cereals and crackers. Now I am just wondering whether the minimal exposure I have had would be enough to cause the symptoms I have been having lately. I will definitely talk to my doctor about it when they call with my latest lab results. Perhaps it would change the direction of our quest for answers.

I am very pleased with my family physician so far. She genuinely seems concerned for my health and wants to get to the bottom of what is going on currently. She is familiar with celiac disease (my last family doctor was not, which is why I spent five years very sick while he dismissed my symptoms) and seems dedicated to making me feel better. She is taking in all the possiblities. So if anyone who reads this lives near Lebanon, Indiana and is not happy with their current Dr....check out Dr. Czeskis and the Medical Office Building at Witham Hospital. She's wonderful.

Thanks again for your input! It definitely helps.

I was diagnosed with Celiac Disease four years ago and have been gluten-free since. In the last few months I have been losing weight, constipated with stomach pains, getting headaches, feeling tired and just all around terrible. My family doctor is in the midst of doing all sorts of tests to try and figure it out. I have had my thyroid tested, had an ultrasound and then more bloodwork. My thyroid is ok, and they found a small uterine fybroid, but it would not be the source of my symptoms. I haven't gotten the results of the latest bloodwork yet, which was testing for malnutrition and such. I am also scheduled for a bone density screening in a couple weeks. I am nervous with the uncertainty of it all and am sure I will keel over when I get all the medical bills. I feel the way I did before I was diagnosed, and it took a long time just to get it figured out. I am married and have a small child now, and although there is not much gluten in the house, I was wondering if it is a big deal that my husband and son eat foods with gluten in it. My son eats cheerios, crackers and things like that while my husband eats lots of sandwiches, pizza, and corndogs. I wash all the dishes thoroughly and wash my hands after handling their food, so is it a problem that it is even in the house? Could that be why I am feeling so sick again? I would feel terrible to deprive them of their favorite foods, so I will not unless I have to. I am tired of feeling sick even when I am taking very good care of myself. So do my husband and son have to go gluten-free too?

I drank Slim Fast for awhile after I was diagnosed because I started gaining weight. I did not really have any problems with them that I remember (it was awhile ago). I read the ingredients and didn't see anything in them that has gluten in it, that I am aware of. I say, if you don't see any gluten-filled ingredients in it, maybe try it and see how it makes you feel. Of course there is the chance that it does have gluten and you may not have a reaction...so its kind of catch 22. If you're really desperate to use that as a weight-loss system...perhaps try to contact the company and ask them if it has gluten in it or is processed in a gluten infested environment. You don't want any cross-contamination.

I know its tough to stay on track with the diet and trying to lose the weight you've gained. Especially if you got really thin before you were diagnosed. Believe me...that's what happened to me! I got as thin as I always wanted to be (although I was very unhealthy) and then went gluten free and gained it all back! And now I just had a baby not even four months ago...so part of me just wants to eats loads of gluten so I will lose weight! Sounds silly doesn't it? But I know that I need to be healthy before I look slimmer. So just try to stay on track...and lose weight the healthy way! You'll thank yourself in the end.

I am 5'1" and have always been petite...I lived with celiac disease for probably 5 years before I found out that I had it. A little while before I actually found out, I had gained weight and got to almost 120 lbs. Then, without slowing down on what I ate (which was a ton) I lost so much weight...I got down to 98 lbs. Even though I wanted to lose some of the weight...I was so unhealthy! I looked terrible. I was 17 at that time, so my mom finally got tired of dealing with our family doctor with no answers and no solutions and called around for a gastroenterologist. It was tough to find one that took patients under the age of 18. It took me a long time to gain the weight back. And even though I've been gluten free for more than 3 years now, I still eat a lot. I'm just always hungry! So that hasn't really changed. I'm at a healthy weight, and I just try to eat healthy so I don't become overweight. So yes...I ate all the time before I was gluten-free...but still eat a decent amount

I did have an endoscopy, but that was more than 3 years ago. I did feel sick a lot before I found out I had celiac disease...but we all know why. I felt tons better for awhile, but then the nausea would come back every now and then. But this time, its almost unbearable. I don't have many chances to actually rest, so I have to work through it. You have to eat to live, yet when I eat I feel so sick...it makes me not even want to eat. But I do, of course. I just need to keep an eye on everything...see if there's a pattern...keep the diary everyone has suggested...try to have less stress...and go to the doctor. Hopefully that will do it for me!

As for pregnancy and all that...I'm not breastfeeding (my son did not respond well to it...it seemed to really upset his stomach...but when we switched to Nestle Good Start formula he was a whole new baby!!!) and I take birth control every morning at 8. Besides being careful that way...we are careful other ways as well (I'm trying to keep this as G rated as possible!!) because we don't want any more children. So...I highly doubt that is it