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rami

Member Since 23 Aug 2012
Offline Last Active Oct 10 2013 07:49 AM
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Topics I've Started

Haven't Posted In A Long While, But Wanted To Give An Update.......

10 October 2013 - 07:47 AM

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!  


Traveling To California For The First Time Since Diagnosis.........

03 April 2013 - 05:47 AM

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!


6-Month Follow Up Test Results

07 February 2013 - 07:01 AM

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! :D

Question For "symptomless" Celiacs

17 January 2013 - 09:34 AM

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?

Bathroom Question (Maybe Tmi)

13 December 2012 - 12:49 PM

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!