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About fripp017

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  1. Happy birthday and may God bless you today!

  2. fripp017

    Does Anyone Experience Violent Dreams?

    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!
  3. fripp017

    Frustrated With Doctors And Test Results

    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.
  4. 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?
  5. fripp017

    Celiac Test Is Neg. - Now What?

    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 ...
  6. fripp017

    What Is The Point Of Diagnosis?

    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.
  7. fripp017

    Celiac Vs Gluten Intolerance

    Since no one seemed to have any ideas on my topic, I searched around for information and found a very useful book. If you are curious like me, this book has alot of answers for Celiac Disease and Gluten Intolerance. It's called Heathier Without Wheat.
  8. fripp017

    I'm G.intolerant - Son Has Diarrhea

    Hi. I know this is off topic to your question, but I was wondering how you were diagnosed with gluten-intolerance. My kids seem to be showing signs of gluten-intolerance and/or Celiac Disease. They are in the process of being tested, but the doctor practically ignores the idea of gluten-intolerance. I was just wondering what it took to get the diagnosis. Thanks
  9. fripp017

    Where Do I Start?

    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!
  10. fripp017

    Just Diagnosed - Weight Loss?

    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.
  11. fripp017

    Where Do I Start?

    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.
  12. fripp017

    Celiac Vs Gluten Intolerance

    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.
  13. 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!?!
  14. 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.
  15. fripp017

    I Need Support With My 3 Year Old!

    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.