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


rami

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rami Apprentice

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!  


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mommida Enthusiast

Wow that is awesome!  I'm so glad you came back to share. :D

1desperateladysaved Proficient

So happy for you and your family!

mommy2krj Explorer

That is wonderful! Thank you for sharing that. Sometimes, just knowing that someone has been there and through it can help. :) We've been gluten free since July and that first month was insanely overwhelming. To the point of tears at the grocery store. I still get frustrated sometimes but seeing the difference in both my boys makes it worth it.

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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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