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About rami

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  1. We started our gluten free journey in August 2012 when my now 9 year old son was diagnosed with celiac disease. I was thankful for this board and all of the support I received at a time when I was feeling overwhelmed and depressed thinking about my son's future. I thought our family would never be able to adjust to our new lifestyle and everyone here reassured me and helped me to understand test results and also helped me traverse the complicated gluten free food world! He was also diagnosed with growth hormone deficiency, so we had that to deal with as well........ I must say that 14 months later I am astonished and amazed at the changes my son has undergone since his diagnosis. He has gained over 13 pounds in a year and has grown 3 inches since starting his gluten free lifestyle and growth hormone therapy. He is much happier, less moody, and most of his ADD symptoms have disappeared. He excels in school and we don't have nearly the attention and emotional issues we had last year. We have had so many friends comment on how great he looks and some that we haven't seen in awhile don't even recognize him. He has had two blood tests since his diagnosis to monitor his antibody levels and both have been normal. He eats like there is no tomorrow and he is growing out of clothes faster than I can buy them! He was well below the growth charts and his is now in the 5th percentile in height and 3rd percentile in weight which is a huge accomplishment for us! I just wanted to say thank you to all of you and to give hope to the newbies that might have some of the same trepidations about celiac that I had. I can happily say that gluten free living is a normal part of our life. We have two other children that tested negative and my husband and myself also tested negative but he decided to go gluten free and he feels great. Our house is mostly gluten free, and my other two children never complain and most of the time don't even notice a difference when they eat a gluten free substitute. I am in a very happy place and at peace, something that I didn't think was possible 14 months ago!
  2. We are traveling for the first time since my son's celiac diagnosis and I am extremely nervous and overwhelmed by the prospect of it. We will be traveling to the Orange County, California area for a wedding and while we will be staying with family members, we will also be out and about much of the time we are there. I have already made reservations at Ariel's Grotto in California Adventure on the day we will be there (which will accommodate for gluten-free), but I am looking for other celiac friendly restaurants in the area. I would appreciate any restaurant suggestions any of you might have to offer. Also, I have heard that Trader Joe's has a large selection of gluten-free products, should we stick with Whole Foods while we are in California or would it be safe to shop at Trader Joe's? Thanks in advance for your help!
  3. We just received the 6-month follow-up bloodwork results for my 8.5 year old son and I must say I am so relieved because they are normal. He was diagnosed via bloodwork and intestinal biopsy in August 2012, and at the time his TTG IGA was 66 (ref range <=19), his TTG IGG was 14 (which was a high normal, ref range <=19), and his total IGA was 143 (ref range 29-162). Recent bloodwork revealed that his TTG IGA is now 5, his TTG IGG is also 5 and his total IGA is 142. This is such a relief to my husband and I because his only truly noticeable symptom has been lack of growth and although we are extremely diligent about cross-contamination and following the gluten-free framework we had no way of knowing if what we were doing was working! While we received the bloodwork results, we have his actual follow-up appointment with the GI next Wednesday so I have a million questions that haven't been answered. Can I assume that since his results are normal that his intestines are healed? Does he need a follow up biopsy to confirm? Does anyone know if the bloodwork results are cumulative over a specific time period or are they more indicative of recent changes? He has yet to show significant growth, but he was also diagnosed with growth hormone deficiency in November and started growth hormone therapy about three weeks ago. I am hoping that we will see a significant growth spurt now that it appears we are on track with the gluten-free diet. Also, my husband and I virtually banned most processed items that we knew did not have gluten ingredients but were processed on shared equipment, would it be safe to try to incorporate some of these items into his diet to gauge his reaction? There are a few things that he really misses, such as a basil pesto tilapia that we found at Costco that didn't have gluten ingredients but was processed on lines with breaded fish. We have a shared household and while he has his own separate toaster, colander, and utensils, and all of our dinners are completely gluten free can I assume that he is not super sensitive to gluten (or should I make no assumptions)? Any other specific items I should be sure to ask his GI doctor at his appointment? I should also mention that his iron and calcium were checked in August and they were both normal and the doctor ordered a check of his Vitamin D when the current celiac panel was ordered and it was also normal although a low normal. It was 24 (ref range 20-100). He currently takes two gummy vites a day and two omega 3 fish oil gummies a day as well. Thanks so much for your knowledge and support, while I do not post often, I do read many of the posts in this forum and the wealth of information available has made this journey more tolerable!
  4. My son is extremely picky so lunches can be a challenge. I feel like we are constantly repeating and he doesn't get much variety but he seems to be happy with that. We received permission from the school principal to use the microwave so that did allow us to expand the menu, however, he usually prefers not to microwave because it gives him less time to eat. That being said, some of the things he eats are gluten-free cold cuts and cheese, quesadillas (corn tortillas), gluten-free noodles with gluten-free soy sauce, gluten-free homemade pizza, spaghetti and meatballs, meatloaf (one of his faves), stuffed pepper, and homemade chicken tenders. He always gets some type of fruit and veggie and I usually send him with one of the following; jif to go peanut butter cups, yogurt, pudding, gluten-free cookies, m&m's, clif z ropes, etc. We always make sure to pack some type of snack for him as well in case of an emergency like an envirokidz rice bar or a lara bar. Drinks depend on the day, we recently discovered that the chocolate milk at school is gluten free so that is usually his first choice (I think it makes him feel like a normal kid when he gets to buy it at school), he will also take an Izze, bottled water, or gatorade.
  5. I was just wondering if it is possible to never develop immediately noticeable symptoms after beginning a gluten free diet and then ingesting gluten? My son's only truly noticeable symptom of celiac is short stature so it is impossible for us to know if he has been glutened. I have read on this forum that many "symptomless" celiacs did indeed develop symptoms after beginning the diet when they were glutened. It has been 5 months since we began the diet with him and he still has no noticeable symptoms. My husband and I are extremely diligent in keeping his diet gluten free, but we have two other children and our household is not completely gluten free so I find it difficult to believe that he has not eaten accidental gluten at all in the past 5 months. It would be great if that is the case, but hard for me to believe. We have his 6 month follow-up next month so we will know (hopefully) whether or not his bloodwork/body has responded to the diet but I am driving myself crazy with the thought that he may be getting gluten and we would never know it. Any thoughts/advice?
  6. Is the 7.2 value her Hemoglobin A1C value and do you know if they also performed a fasting blood sugar test? I had gestational diabetes when I was pregnant with all three of my kids and have pre-diabetes so I am fairly familiar with diabetes. I'm not sure if there is a link between the low iron and blood sugar but I know that I had to take an iron supplement during my pregnancies because my levels were low (it could have just been because I was pregnant and your body needs more iron then). Also I had numerous UTI's during my pregnancies and my OB told me that these were related to the diabetes. Basically my understanding was that when you have high blood sugar, glucose gets into your urine which causes a yeast infection/UTI. Once I got my blood sugars under control I stopped having the UTI's. Have you considered checking random blood sugars with a blood glucose monitor throughout the day? These can be really helpful in establishing a baseline and determining if certain food cause her blood sugar to increase. Hopefully my limited information helps, diabetes really scares me so I try to keep informed about it.
  7. So my 8.5 year old son has been gluten free after his celiac diagnosis for approximately 4 months. His most noticeable symptom is short stature. Since placing him on the gluten free diet my husband and I have been obsessive about his poop (apparently we need to get a life) and while he usually only poops once a day as opposed to the 4-5 times he used to go before the diet most of the time his poop still floats. Does this mean he is still not absorbing fat, vitamins, etc. and that his intestines are still damaged? We have a follow-up in two months, but I am now concerned that his levels will not have dropped and I will be devastated! This may be TMI, but both my husband and I had a complete celiac panel which were both negative and he said his poop floats most of the time as well, mine never does! Thanks for humoring me with my obsessive and gross questions!
  8. Thank you so much for the information. My husband and I are feeling overwhelmed by all of this. We had just gotten used to the idea of celiac, so now we have to adjust to the new diagnosis. I am thankful that we know what is going on, but a little stressed by all of it as well. I will definitely be ordering the buzzy because he absolutely hates shots and works himself into a tizzy just thinking about it! Thanks again!
  9. I'm sure many of you might know my story, but thought I would post it again just in case. About a year ago my 8.5 year old son was referred to a pediactric endocrinologist because of short stature. Since about age 4 he has not not followed his growth curve and eventually fell off of the charts. His only symptom was short stature, but the endocrinologist ran numerous blood tests to determine if he had an underlying cause and after blood work and a biopsy he was dx with celiac by a gastroenterologist in August. He has been on a gluten free diet since but because his only symptom is short stature we cannot be sure how well he is responding to the diet as we don't have a follow-up with the gastroenterologit until February. In the mean time he has been followed by his endocrinologist. He had a visit last month in which he only grew 1/2" over a three month time period so the endocrinologist recommended that we conduct a stimulation test to determine if he is making growth hormone. My husband and I were on the fence about it, not sure if we were being impatient about his growth since he had only been gluten-free for three months at the time, but we decided to rule it out! The test was performed about three weeks ago and lo' and behold, he is not making enough growth hormone. The endocrinologist classified his deficiency as moderate and told us that without growth hormone shots he would never reach his potential height and could suffer other health implications despite being on a gluten-free diet. He still has to undergo testing for other hormone levels to determine if we have to add anything more as well as an MRI to rule out a pituitary tumor, but once that is done (and hopefully all negative) the endo wants him to start the growth hormone shots. Have any of you had experience with this? Did you child respond to the shots, were there side effects? Did they reach their potential height? Does anyone know if there is a link between celiac and growth hormone deficiency? I asked the endo and he said no, but I'm finding it hard to believe one kid could have so many issues without a unified link (he also has asthma, allergies, and ADD)! I am beside myself because now we have another condition to address, but also thankful that we have identified these issues!
  10. We received a note yesterday that all of the 3rd grade classes at my son's school will be making gingerbread houses on a specific day in December. My husband and I talked about allowing him to participate as long as he doesn't eat any of it, but then I thought it would be even better if he could make a gluten free gingerbread house of his own. Anyone have ideas as to where I might find a kit or recipe? Thank you!
  11. I wanted to let you know that we are in the same boat! My son has been seeing a pediatric endocrinologist due to growth issues since March. My husband and I are not tall, but the concern with my son was that he was no longer following his growth curve. He dropped off the charts after about 4 years of age when he had consistently been in the 15-25 percentile range. At 8.5 years old he is the smallest in his class by far and others constantly mistake him for a 6 year old (which makes me so sad). He was diagnosed with celiac in August via bloodwork and biopsy and we have had him on a strict gluten free diet since then. We had a visit with the endocrinologist just last week and he grew 1/4" in three months so we were disappointed as was his endocrinologist. We do not have a follow up with our pediatric gastroenterologist until February to retest his TTG levels so we are in a holding pattern unsure of what to do. When he was tested for celiac his endocrinologist also tested for diabetes and also checked his thyroid and growth hormone levels. The test for diabetes and thyroid were normal and the growth hormone levels were normal but on the lower side of normal. The endo now wants to perform a more invasive but more accurate test of his growth hormone levels. My husband and I feel like we are stuck in reverse because we want him to grow but don't know how long it might take if his only issue is celiac. On the other hand, if he has growth hormone deficiency as well we don't want to waste any more time so we decided to schedule the new test. I feel badly for him because he is only eight and has had more testing and medical issues than I have had in 37 years. Sorry for the long ramble, but I wanted to let you know that you are not alone. Sometimes I feel that we are alone in this and I just wish my kid would grow like all the other kids without having to jump through hoops!
  12. So my newly diagnosed 8-year old would like to spend the night at his friend's house this weekend and I don't know how to feel about it. I hate to deprive him of some of the things I loved the most as a kid but I am terrified about this. I figured I could prepare his dinner and breakfast so there are no concerns but don't want to scare his friend's parents. Any thoughts for those with experience?
  13. We need to take popsicles to school tomorrow for my 8-year old son. Any ideas as to which brands are gluten free? Thanks!
  14. Thank you for your help! We did take him to the doctor because he just wouldn't settle down and she said that it is not uncommon to develop GI symptoms after being on a gluten free diet when you are exposed to gluten. So she said that he either got some gluten or he has a stomach bug that seems to be going around. Time will tell because she said if it was a bug he should have vomiting or diarrhea. He does seem to be feeling better thankfully! After reading responses I'm thinking maybe it was the colander as we have not purchased a new one. This has actually been a point of contention between me, our nutritionist and my husband. He doesn't understand why we need a new colander even though the nutritionist recommended it. His reasoning is that we all use the same silverware and plates so why should the colander be any different. He was fine with the new toaster and I have even convinced him to buy a George Foreman grill so we don't have to put foil down everytime we cook something for our son on the grill but he is hung up on the colander for some reason. Funny, I know! Anyway, he has lost the battle and I am going to purchase one specifically for the gluten free pasta today. Thanks again!
  15. My 8 year old son has been gluten free for about 5 weeks since being diagnosed with Celiac. He did not really have any GI symptoms but does have short stature so it is difficult to know how he is actually responding to the diet. For dinner last night he had gluten free meat ravioli and veggies. For dessert he had strawberries and bananas dipped in ghirardelli milk chocolate baking chips that I melted myself and a crystal light flavor packet mixed with water. He woke up at 1:30am this morning screaming that his stomach hurt, he said it felt like a pinching pain. I had him eat a banana and drink some water and he calmed down and went back to sleep. When we woke him up for school he began crying and saying that his stomach still hurt. He has not vomited or had diarrhea so I'm not sure what to do, is it possible he got "glutened" by something? I had previously called ghirardelli about the chocolate chips and they assured me they were gluten free. My husband gave him the drink at football practice. I asked him if he read the ingredients and he said he hadn't but that he "thought" he remember reading in one of our books that it was gluten free (grrrr). After doing some research this morning it does appear to be gluten free. I'm wondering if the culprit might be the ravioli as this is the first time we have eaten it. We bought it at a local "gluten free" mom and pop shop but had previously tasted it at our city's gluten free food fair. I checked the ingredients are all gluten free so I am stumped. Based on experience (since I have none) does this sound like he has gotten some gluten or could it be something else? Thanks for the help!