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fripp017

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  1. I have always had dreams I could remember - some bad and some good, some very violent or disturbing. When I started having Celiac symptoms my dreams were usually worse. I definetly sleep better when I haven't had any gluten, but I still have dreams. I mostly did want to comment on the smoking part. I also quit smoking after being diagnosed and I had horrible dreams. I attributed them to the nicotine withdrawl since I did it cold turkey. I started up again due to stress, but I am quiting as soon as I run out :) So, maybe if you get all the nicotine out of your system and stay on the diet (read labels!! lol) then you will be able to sleep alittle better. Best of luck and hope your dreams get better!


  2. I am right there with you, only I have two children! My daughter is 26 months and my son is 4. They both had the endoscopy and biopsies taken in July. They both came back negative. I put them on the gluten-free diet and they are so much happier. My daughter sleeps better, she rarely has rashes anymore, and she is just better. My son is alittle bit harder because he has been eating gluten for longer and doesn't quite understand why he can't have certain foods. I have to tell him that the doctor says that he can't eat that food only "special" food, which is the gluten-free kind lol. My biggest worry too is school. He went to pre-school last year and is returning again this year. Only this year he is on the gluten-free diet with no diagnosis. I wish more doctors would study the research and be like Celiac-mommy's doctor and diagnos based on gluten-free diet results. It make alot more moms lives' easier.


  3. So, after being diagnosed with Celiac I noticed my children had similar symptoms. So, I had blood work done on them. The blood test had some higher levels of antibodies, so they were both refered to a pediatric GI specialist at Yale Hospital. I kinda thought that since they would be going to a specialist for children, at a well funded medical facility that the doctors would know more of what was going on with the whole gluten thing. When my children went to meet the doctor he said the anitbodies were "non-specific." However, these are the same blood results that got them the referal. Because I was Celiac, he chose to do endoscopies on both of them. When I met with the doctor the day of the edoscopy I asked him if he had read the book Healthier Without Wheat. He said no!! The doctor didn't even seem to have any concept of gluten intolerance or "non-Celiac" responses to gluten!! Shouldn't a doctor have to so research too!?! My 2-year-old daughter went in first. It was a heart wrenching experience to see her go under general anesthia, but I thought it would help her in the long run. When it was done, the doctor said her intestine looked okay and she didn't have Celiac (since he doesn't know of any other possibilities). Then went my 4-year-old son. The doctor said that his intestine looked "perfect" but he had a "non-specific" rash on his stomach. He even showed me the pictures. He also declared that my son did not have Celiac. I TOLD him that I was switching them onto the diet when I returned from the hospital. He gave me a confused look and continued to go over post-endoscopy instructions.

    My first complaint is - Why don't doctors keep up with research?? As soon as they are done training, they are done learning?? Don't lawyers have to learn new laws? Don't teachers have to teach new history and theories? Don't scientists have to learn new methods? UGH!! Do alittle more studying! I'm not saying that the research is where the answer right now, but at least know what is going on and have an opinion on it! My children actually started showing AMAZING improvements on the diet within the first week! I just wish they had a real diagnosis for school and outings. It's hard to explain to people why they can't eat that way for "no reason."

    My second complaint is - Why can't my son's stomach rash be Celiac Disease? In Crohn's, people have a "normal" area in which they have inflamation. I believe it is the colon and lower part of the large intestine. I have read that some people with Crohn's actually have inflamtion in their esophagus and stomach. Why isn't it a possibility that some people with Celiac's may have their stomach attacked instead or in conjuction with the intestine?


  4. I was diagnosed with Celiac Disease not too long ago. After I started getting better on the diet, I noticed that my daughter (21 months at the time) and my son (4-years-old) were displaying similar symptoms. They were tested with the blood panel and they showed no "evidence" of Celiac (according to the GI specialist), but they were refered to the specialist based on the results ...? Crazy doctors. Anyway, to get to my point ... both my son and daughter are scheduled to have their endoscopies Tuesday (July 14th). I am going out of my mind worrying if it is the right thing to do. There is so little ANYONE really understands about Celiac and human response to gluten. I just hope I am doing the right thing and that my children do not have a negative response to the anesthesia. My husband and I agreed upon the procedures being done so that we could tell are children why they weren't eating like the other kids, and have a valid medical reason. We felt it would be easier with the diagnosis. I had a teenage girl write back to one of my posts while I was debating on having the procedure done and this was the one post that probably helped me the most:

    [Hey there,

    I had an endoscopy at 1.5 and I turned out OK

    Granted, 18 years ago they didn't have all the fancy blood test, stool test etc. So I'm not really sure what my parents would have done if I was 1.5 and being diagnosed right now. Like everyone else said, its really up to you and your husband as the parents, everyone's family has different needs.

    I know from a child's prospective, I am glad my parents got a definite diagnosis while I was young. I hear all the time about how horrible it must be to have never tried pizza or cake or bread, but I feel like those who have experienced all those foods for a long time have a much harder time dealing with getting rid of them. If the endoscopy did give you a definite result of celiac, she would be learning from a young age what foods she can and cannot eat, and like you said, would know that those food would make her sick, not just that you did not want her to eat them. I knew by the time kindergarden rolled around that I needed to double check all foods with an adult that knew about my food problems and could rattle off "I have celiac disease, I can eat wheat, oats, barely or rye" to anyone that would listen to me.

    I also know that if I didn't have that definite diagnosis, when middle school and high school rolled around, I probably would have started eating gluten on my own, knowing that I didn't "officially" have celiac. Since that's when kids start eating out with friends and being in more social settings, I struggled just because I don't remember being sick or all of the tests and hospital visits. The disease didn't seem like it was a real problem that I had, because I had never really experienced the effects of it. If that makes sense...

    It was the reminder from my parents that this was a real, diagnosed condition as well as the consequences I felt the few times I did cheat that helped me stick to the diet. If I am honest with myself I know I would have rebelled and cheated way more often if I did not know for certain that I had it.

    <3 Taylor

    Celiac since 1990]

    Hope this helps and wish me luck on Tuesday ... :unsure:


  5. I think your question is such a big issue for patients and doctors. The disease has only recently started becoming more recognized, but doctors still know very little about it and why the body has such a response. In my experience, I HAD to know. It just bothered me that I suffered for so long and I trusted doctors so much that I couldn't understand why the doctor was just as clueless as I was. In any case, doctors still have alot to learn and alot more to study before we can get past the "gold standard" test of endoscopy. (By the way, I hate that phrase now.) There is a great book I just found that helps put some insight into our bodies and wheat and why some people stay on the gluten-free diet when they aren't "diagnosed" with Celiac Disease. The book is called 'Heathier Without Wheat" by DR. Stephen Wangen. My children are going through the testing right now and I have found this book very helpful since they don't have the "obvious" blood results for Celiac Diease.


  6. LOL! Yes, there is ALOT of hidden gluten! Some research and lots of label reading. The one thing I dread the most now that I am on the gluten-free diet is grocery shopping. It used to just be in and out, but now I spend most of my time checking the labels. Hints that I can give you - stay away from foods/products with: monosodium glutamate (flavor for chips, bbq sauce, snacks), modified food starch (corn, rice and potato are acceptable), and malt (often hidden in cereal that seems to be gluten-free but add malt for flavoring).

    Best of Luck!


  7. Hi. From my experience, you will initially loose some of the wieght when your body starts to heal. It starts absorbing the right foods, you feel better and you can be more active. It only took me about 3 days to start getting up and moving around more. I had sevre abdoinal pain as my main symptom, on top of the extreme tiredness. I spent alot of my sick days in bed. So, by the end of the first week I felt great. I was up, doing chores and getting some moderate excerise in. But, once your body fully heals and you start replacing the "normal" foods with gluten-free foods you tend to absorb alot more fat. Gluten-free foods tend to have more fat in them to replace the flavor in "regular" food. So, if you start feeling better and you want to loose weight, I would suggest eating less of the gluten-fee carbs (especialy the gluten-free bread) and start a regular exercise regimen. I know where you are coming from, but unfortunetly I had much more weight gain than you. I started at 130lbs. I'm 5'2" and I now weigh 155lbs. When I was diagnosed I weighed 165lbs. I have lost some, but it has been a couple of months and I seem to have stopped loosing weight. I take it one day at a time. Just don't over do it, you are still healing. Don't push it, just do what you can and feel good knowing that you are doing your best.


  8. Hi. My children are in the process of being diagnosed as well. Doctors are still getting used to the idea of Celiac Disease. They aren't really sure how to test for it, how to know anyone has it for sure until they are very, very sick. So, I would keep trying. If you want to switch her onto the diet to test it, I think it would be less overwhelming than you think. When I switched to the gluten-free diet myself, I started noticing a difference in about 3 days. By the end of the week it seemed like I was a totally different person. There are all sorts of recipes online and many more foods available in stores today. They make gluten free snacks and foods to replace some of your regular meals. For example, most grocery stores carry brown rice pasta, mixes for cookies, pancakes, etc. I don't know if I helped, but my only real advice is, if you want a diagnosis then you have to keep going until you get the doctor that takes the time to explain the test results to you and to listen to you. If you just want to help her get better, then switch her to the diet.


  9. My daughter is 2. Her results were as follows:

    Gliadin Ab IgG - 35 (suggested results should be less than 11)

    Gliadin Ab IgA - <3 (suggested results should be less than 11)

    Tissue Transglutaminase Ab IgA - <3 (suggested results should be less than 5)

    My son is 4. His results were as follows:

    Gliadin Ab IgG -20 ((suggested results should be less than 11))

    Gliadin Ab IgA - 5 (suggested results should be less than 11)

    Tissue Transglutaminase Ab IgA - <3 (suggested results should be less than 5)

    They were tested after I was diagnosed and I started seeing similar symptoms in them. My son complains of stomach aches alot, but I didn't know why. My daughter doesn't sleep through the night. She wakes up crying in pain. They both also have irregular stools and alot of gas.


  10. Both of my children had the Celiac blood test. The both had high levels of IGG but no real presence of the other antibodies. The GI specialist said that they are doing the full work-up because I have Celiac disease, but IGG antibodies are "non-specific" and could be an allergy to anything. I was just wondering and reaching out to the parents whose children have been diagnosed with gluten intolerance. What did their blood test results look like? I had some increased specific antibodies and some damage to my intestine, but if there is no damage to their intestines (even though they are still very young) then it seems as though the specialist is just going to pass it off as "something else" or "some other allergy". Please, if you are willing to give some insight on what I am missing or some blood test results, I think it would help me to talk to the doctor when I return. Why is it that I always seem to have to deal with the stubborn doctors!?!


  11. It's kinda wierd, but mine all started with a visit to my ob/gyn. I spent a month or two in and out of that office and then in and out of my doctors office until the celiac panel was done. I was diagnosed with (and prematurely treated for) :

    miscarraige

    menstrual cycle cramps

    uterine infection

    PID

    Diverticulitus (sp?)

    Irritable Bowel

    Depression

    yeast infections

    h. pylori

    thyroid disease

    and finally was sent to a GI for testing.

    Crazy doctors.


  12. Hi,

    I was just browsing through this post and the replies. I have Celiac Disease. My two children have been screened by blood tests and both have come back with positive results. I am in the process of getting them tested. My son is 4 and my daughter will be 2 in a week. I have looked online, aniticipating their results, and I have found a couple of cute and creative ways to id your children with medical issues. I read the post about the pretzel given to her by a stranger and that makes me mad and worried all at the same time. Do you have a medical id for your daughter? I know that when my children are diagnosed they will have one on them one way or another. I have found sites with medical id shoe tags, zipper tags, and kid sized bracelet and necklaces. That might be something to consider since you can't be sure that friendly park visitors won't be slipping your kids food. If your daughter had a medical id and someone doesn't ask you first about something, you have the right to enlighten him/her on the purpose of a medical id and the disease your daughter has. Just thought you might want to consider it as an option since you can't really control the cross contamination issue with food companies.


  13. That is kinda weird. I also smoke. I did notice that, but maybe not to the extent that you did. I quit for a week and I felt great, but I had a gluten-free lifestyle break down, so I started again. I felt much better when I quit though. I am going to try again. I did notice that once my body started healing smoking made me feel sick. That is why it was pretty easy for me to quit. You might want to consider why you smoke and if you want to continue. The is no ingredients label on cigarettes so you really don't know how it could actually be affecting your body and how your Celiac Disease might be responding to it. Just a thought.


  14. Warning : This may be a large post of venting, but I hope someone can relate to it.

    So, I found out I had Celiac Disease February 2009. It wasn't a big deal at first. I thought that all I needed to do was change my diet and life would go on... WRONG!!! I had my two children tested, just to be safe. I'm glad I did because the blood results show signs of Celiac and we will be seeing a pediatric GI specialist for them soon. I feel awful because I am the one whose genes made them sick. I can deal with it, but now my babies will never remember what birthday cake really tastes like, or get to eat the oreos they love so much. I feel horrible as the parent of sick children and as the person who made them sick.

    On top of that, I have been trying work off the weight I gained while I was trying to get diagnosed. I have barely lost anything!!! I had to work to lose weight before, but this is ridiculous!!! I am so frustrated! I just keep thinking about life before ... I had no idea how good I had it.

    Also, my husband is in the Navy. He is on a submarine and he has been in and out to sea this whole time. He found out the results of my childrens' tests via email. It's hard not to have someone there to support you through such a large change. People don't know what Celiac Disease is. It isn't well known and most people don't look at me and think, "wow she is sick." For my own family to invite me out to dinner and I have to remind them what I can't eat and why I don't eat out anymore. It's crazy. They act like it isn't a big deal and they often tell me just to have a little bit of "whatever" when they don't want to work around me and my illness. I have to remind them of the months I spent being ill and visiting the doctors. Not even my husband has been very kind about the situation. He hasn't been home long enough to see how hard it has been for me. I wish he was here, but I don't really know if he would help or make it worse. We are also looking at getting new orders and moving in a few months, on top of all the stress and change I already have been dealing with - by myself. He won't even be here for packing, cleaning, or any other prep that I will have to do.

    So, I saw my doctor today to get some paper work done and he asked me how it was going. I told him all of the stress I have been dealing with and how I was feeling kinda down. So, he tries to be positive and tell me that at least I pushed to figure out what was wrong with me so now my children will be taken care of before anything gets out of hand. All I can think of is how horrible a person I am for giving it to them. So, in the end he sends me home to consider seeking help for depression! Crazy! I was diagnosed with depression within the last year, but I would honestly attribute that to the Celiac Disease. It can be a symptom and why wouldn't I be depressed - I felt sick and tired all the time! I am just stressed! That is why I wanted to put this post up. Just to let out alittle steam so I don't have to go visit anyone. Sheesh!

    Thanks for letting me vent!

    :)


  15. If you like to bake, I can give you the recipes I use for pizza crust, bread, etc...

    With my kids, I don't make a big deal about what they can't eat, but focus on all that they can have. I wish you the best of luck!

    I have been searching for some easy bread recipes. I have a bread maker too, it's just hard to find all the fancy ingredients. So, if they aren't too complicated, I would love to get some of your recipes!!

    I think that is a great way of looking at it. I am not exactly a positive person, so it's hard for me to focus on the more positive ideas. But, I've made it this far and I know I can do ANYTHING for my kids.

    Thanks for the encouragement. I needed it :)

    Jessy


  16. Thank you all for you input. It looks like it's going to be a long road for me. My son's test came back and his were very similar to mine. So, looks like my bad genetics were pretty dominant. My son just turned four. He loves pizza, toast, and crackers. I am so upset. I think he is going to have a hard time. He has no choice, but he chooses not to try new things. I was really hoping his test would come back negative. I will be getting him the endoscopy too. Well, wish me luck.

    PS Thanks to Taylor, I'm glad to see a child happy with their parents' decision and I hope my kids appreciate it too.


  17. What is dd, dh, ds, etc. ? I am lost lol

    celiac-mommy - I know. I had to kinda do that with myself. I have personally been through it and as long as you have results there is still hope through a second opinion as well. There are some awful doctors out there. You could always consider that for your family. You don't have to put them back on gluten, just take the medical records to another doctor. (Depending on your insurance too.)


  18. Thank you all for your opinions. It really means alot to me. I discussed it with my husband and he was not worried at all about getting our daughter tested. He didn't really see why I didn't want it, but told me we didn't have to do it. He can be such a man sometimes. I do feel that I agree with linsmad and the only reason I think I am probably going to go through with the endoscopy is because my doctor never gave me a definite diagnosis. I did what I thought was right. But, for a child you don't really have that option. If she has it, then it will be,"No you can't eat that because it will make you sick." It won't be because I asked her not to eat it, just in case. I can't see taking away some of the food they love when it isn't needed. So, I think I want to find out if it is really needed. Also, my daughter did much better with the blood test than my 4-year-old son. I thought that was kinda funny. Still waiting to see what his results are, but the more I pay attention, the more I think he shows alot of similar symptoms to my daughter. We will see.


  19. As a Celiac myself, I would like to know if they have it. My daughter was tested, she will be 2 in May, and her blood panel came back a pretty high response to gluten. She didn't show definitive lab results for Celiac though. They want to do an endoscopy on her in the next couple months. Has anyone done this to their child? Is it worth it?

    Against my better judgement as a mom, I also had my 4-year-old son tested. I am still waiting on results. As a Celiac I want to know to look for symptoms and new reactions to food. After being gluten free for a couple of months I had to cut out dairy. I want to know if it is just a gluten thing or if it is the disease. As a mother, I don't want to put my children through the tests that I have been through.

    Any advice .... PLEASE!!


  20. She was visiting pretty regularly every 28-30 days.

    And here I am - DAY 23 of bleeding (to include the few days of nothing early on).

    This has been the strangest period I have EVER experienced, and I'm a little freaked out that something serious is going on. I'm feeling fatigued (moreso than usual) and have been a little light headed a few times over the past couple of days. I'm concerned I might be becoming anemic.

    There reason I was actually, eventually, diagnosed with Celiac Disease is because it all started with abdominal on top of irregular bleeding. I started having "normal" menstrual bleeding two weeks after I just finished my last period. I am also pretty regular (28 days) and I bled for 12 days straight, not always heavy but enough to have to use some kind of napkin. When I visited the ER, the nurses initially thought I was having a miscarrage, but I was on the Mirena so it was very unlikely. Then the doctor told me I was just having cramps, but his assistant ordered an pelvic ultrasound. The ultrasound only showed "normal" sized cysts. Then I spent a month in and out of the female doctor's office. They couldn't find anything, but I was still having serious abdominal pain. Eventually, I got to the GI specialist (after 3 weeks of unnecessary antibiotics, removal of the Mirena, and 4 to 5 pap smears and pelvic exams).

    I have been on the pill now for 4 months and my menstrual cycle still isn't back to "normal." It is off a couple of days and the bleeding is still irregular and the cramps are worse! I am considering going back on the Mirena since it wasn't the problem and it cuts out most of the bleeding anyways. You might want to look into that. I am only hesitant to go back on because they initially thought that was my problem, or that I had a uterine infection because of it. There was nothing, and I loved not having to take a pill every day!

    Good luck and I hope they find something!

    Jessy :)


  21. Hey Jessy. I was wondering how long you were back on gluten before you could take the blood test and what were your results?

    I actually went back on gluten for my endoscopy. I had already had the blood tests and my Primary care doctor told me to go on a "low-gluten diet" since I didn't have a large response to gluten antibody-wise, but any gluten causes me serious abdominal pain and nausea. I went off gluten for a week and felt great!! When my GI said I was supposed to be eating it I was upset and told him I wanted the earliest appoinment available. I went back on gluten for about two weeks. It was hard. I was sleepy, irritable, and in pain. It's hard, but it was worth it. My endoscopy came back with damage to the small intestine, but not bad. That is why my GI wouldn't give me the full diagnosis. My Primary care doctor told me he thinks I caught it early since my symptoms were so bothersome/painful. I may not have gotten the full diagnosis, but I had to know. I even scheduled an appointment for a second opinion, but my I some insurance issues. So, that is probably my next chapter lol.


  22. That just happened to me too! I just put up a post for dairy-free advice! I have only been on the gluten-free diet for 2 months, and I have seen many people on this site gluten-free, dairy-free, soy-free, etc. and wondered if I would be next. Needless to say I am now gluten-free and dairy-free. Agian, like the other posts you have already recieved, I have had small issues with dairy to begin with, but I still ate it. If I eat it now, my body reacts as if I had eaten gluten.


  23. For some reason, I seem to go against most of the forum members on this one, because I went through alot doctors to find out that I had Celiac Disease. Most of the members replied similar posts about staying on the diet, which is VERY good advice. But, I figured I would play devil's advocate.

    I have two children and I wanted to know if I had Celiac or not so I would know if they should be tested. Plus, part of me really wanted to know what was wrong. My GI specialist was a jerk, told me I shouldn't waste my time getting my children tested, and that all forms of gluten intolerance, allergy, and Celiac Disease are basically the same thing. (I have yet to determine if that is true or not.) He told me I "probably" have Celiac Disease, but he wouldn't give me the diagnosis. (My primary care doctor thinks I may have caught it very early so I didn't kill my small intestine enough to tell.)

    I just had my 22-month-old daughter tested (she kinda presents symptoms but it's hard to tell if it's terrible two's or Celiac :) ). I just found out a couple of days ago that she at least has a gluten intolerance and the doctor will be sending her to a pediatric GI specialist.

    All I'm trying to say is do what makes you sleep better at night! I had to go back on gluten to be tested. My husband had a hard time, but he knew I needed to know. I had alot of people thinking I was depressed or acting sick for attention. I think it depends on your situation. Also, if you go back on gluten - the next time you are gluten free and you look at the cookie and think, "It wouldn't hurt me that bad," you would know how bad it would really hurt you lol.

    Best of luck and I hope my story helps.

    Jessy