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About chrrsn

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  1. My two year old daughter had positive blood tests and an inconclusive biopsy. But after a few months of a gluten free diet she is doing great and putting on weight and no longer has chronic diarrhea. Her doctor says that as long as the diet challenge is working, who cares if the biopsy was inconclusive? He has diagnosed Celiacs Disease on the this information. I guess the thing is, it would be great if all tests were 100% in favor of a positive diagnosis, but it doesn't always work that way. If the diet works, go for it!
  2. First of all honey, this is not your fault and no one should make you feel like crap because you have an illness that you cannot control. I have a two year old daughter that has Celiac's Disease, and because of the risk of cross contamination, we as a family decided to go gluten-free to keep her safe and to also make sure that she never feels different when she is at home. I found that I had alot of friends and some family that truly didn't understand just how sick Victoria gets when she is exposed to gluten. Some of them thought that I was being a little over-dramatic. I have found a lot of different website written not only by people suffering from Celiac's Disease themselves, but doctors specializing in it and the results of gluten exposure to celiac sufferers. I forwarded all of those websites to my friends and family with the hopes of educating them. Those that cared enough to read the information I sent understood. Those that didn't, I could no longer trust to bring Victoria around. Yes, it is a challenge to shop gluten-free, and yes it is a challenge to cook from scratch and no longer use some of the short cuts I used, but it makes Victoria healthy and its worth it to me and to those that matter. Victoria has been gluten free for four months and she is doing great, she went up from 18 pounds at 2, to almost 24 pounds. She is healthy and happy with rosy cheeks and lots of energy. The shopping has become easier. I know now what to buy and I no longer even notice the things that she can't have. I guess to sum all of this up, you do what you need to do to make yourself healthy. You have nothing to lose from doing this and everything to gain. It is great that your bf is trying to be more understanding, he obviously does care. It gets easier. As for everyone else, try educating them. People can't dispute hard facts they will have to come around. Good luck.
  3. My two year old daughter has been diagnosed with Celiac's Disease as well. Her four year old sister, myself and my husband are not. But we decided to go gluten free to make sure that she never feels different when she is at home. I see that you already have a list of things that are gluten free, but as for sandwich meats, I have found that Freybe meats are gluten free and safe to eat. I am not sure if they are available where you are, I am in Canada. But I hope that everything works out well for you and your husband. I know that I never realised how sick Victoria was until she went on a gluten free diet and then I saw how much she must have suffered for the first year and a half of her life. Good luck.
  4. Hi Walter, I am sorry that you feel so bad today. It is very difficult to go into a gluten free diet. My little girl, who is 2, has Celiac's Disease and we have all gone gluten free to make sure that she never feels different when she is at home. I know the trouble that comes from picking up something in the supermarket that you have eaten all of your life only to find that it is now something that you cannot eat. But it gets easier and you learn to like the gluten free food and you learn to recognize the things that you can eat and the ones that you cannot. My little girl, like you, suffers severely when she does eat gluten. The pain she feels and the pain that I am sure that you feel today, when she eats something that is gluten containing cannot be worth the second of joy that you get eating that comfort food. There are lots of chocolates and sweets and treats out there that you can eat. I found that caramilk bars are okay and actually the gluten free pretzels that you can buy are really good. You should also see if there is a support group in your area for Celiac's sufferers. The support and recipe exchange and access to information from others in your situation would be amazing. Things will get better and I hope that you too will FEEL better soon. Good luck.
  5. I have a two year old daughter that has been diagnosed with Celiac's Disease. I have found previously that oranges and orange juice cause a severe rash on her bum after she has a bowel movement. I cut the oranges from her diet and the rash went away. Yesterday, Victoria drank some orange juice from her sister's glass. When Victoria had her next bowel movement, her skin became severely inflamed and sore. Since then she has had 6 diarrhea diapers with her skin becoming more and more inflamed. This may sound odd, but is is almost like the stool itself is burning her skin. Open sores have appeared on her bum, and the stool is almost black. She is used to having diarrhea when exposed to wheat or gluten, but has never gotten a rash like this with that exposure. She also has a severe allergy to strawberry, raspberry and blackberry. Is it possible that this is an allergic reaction to the orange and if it is causing this type of reaction to her skin, should I be concerned about the damage to the bowel itself? Thank you.
  6. What To Do?

    I am unsure if you are able to help me and the best that I can hope for is a little advice or a push in the right direction. I am a mother to two beautiful little girls. My four year old is the picture of health and is rarely ever sick. My youngest, however, is two and has been having digestive problems from approx. 6 months of age. She is very small for her age and is currently just 21 pounds. Victoria has constant diarrhea and upset stomach. She complains of a bad tummy and often has bowel movements up to 5 times a day. They are basically fatty diarrhea or colored water! I had taken her to her pediatrician several times only to be told that it was completely normal for this to occur, although I have never had this problem with my older daughter, Katie. In August of this year, a new pediatrician was in town filling in for vacationing doctors and I brought Victoria to her and mentioned this problem to her when she noticed her poor weight gain- Victoria was only 18 lbs at this point. She ordered blood tests and a couple of weeks later she called us back to the office and told us that the blood tests showed that Celiacs Disease was present and referred us to a doctor in the Stollery Children's Hospital in Edmonton. I started Victoria on a gluten free diet and saw an almost immediate change, she seemed to have more energy, she enjoyed her meals more and the color in her cheeks was amazing. We travelled with Victoria to Edmonton to see this doctor in October after waiting for what seemed forever to get an appointment-at this time Victoria had put on almost four pounds. Of course, I immediately got into trouble for starting Victoria on a gluten free diet without seeing this doctor first. He said that the blood test meant nothing and the poor weight gain may have been caused by 'a mother taking things out and adding things into a childs diet without knowing what she was doing'. Basically he felt that there was no concern and said just to put my husband and my own mind at rest he would do a biopsy of the bowel to see if Celiacs Disease was present. He arranged it for five weeks later on November 6th and told us to go home and put Victoria on a heavy gluten diet to ensure that the biopsy was conclusive. Unfortunately, upon arriving home and trying to put Victoria on a gluten diet, I found that she was not interested in eating these foods anymore and we found it difficult to get her to eat any foods containing gluten. We went back to Edmonton in November for the biopsy and I told her doctor that she wouldn't eat very much gluten. After the biopsy upon speaking to her doctor he told us that he was certain that the results of the biopsy would be positive and if they weren't he agreed that there was a problem with Victoria and further investigation would be required. The biospy was performed and the results were inclusive. So her doctor arranged some allergy tests, telling me that he was now sure that the allergy test would reveal an allergy to wheat. Well the allergy tests revealed no allergy to wheat, a severe allergy to strawberries, and mild allergies to whole grain rice, soy, eggs and peanuts. Upon getting these results I got a call from Victoria's doctors Nurse telling me that he had reviewed the results and decided that we should remove all the foods that showed results in the allergy test from Victoria's diet and see what happens. She said that a dietician would contact us shortly to set up a diet, that was over three weeks ago. I started making all of Victoria's food from scratch putting in as many gluten containing foods that I could because we had been told that if this failed to work within three months, then we would try the biopsy again. In the meantime, he did not wish to see Victoria again for three months. The soy, eggs, whole grain rice and peanuts were removed from her diet and nothing happened. She still continued to have five bowel movements a day, she continued to be pale and sickly and generally unwell. Finally after consulting with our family physician after being unable to get a response from the doctors in Edmonton, I decided to put those other foods (e xcept the strawberries obviously) back into the diet and start her on a gluten-free diet again. The next day she had a semi-solid stool (one only), the following day the same thing happened and then for the last two days she has had one stool a day, one perfectly formed stool and her color is returning. I guess, the question I have is, what does the inconclusive biopsy really mean? Obviously gluten is the problem for Victoria, are there any other problems or allergies that could be associated with this? What can I do to help my daughter get a better diagnosis or is there anything that I can do? Please, I am at my wits end. I don't know where to go to from here and what to do next. The gluten free diet is having great results for Victoria but inevitably, Victoria will need a diagnosis as to what her problem is. I just can't watch her suffer anymore. She screams at the sight of anyone in a white coat or anyone resembling a doctor...I just don't want to put her through testing that's not needed anymore.
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