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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
      Unless gluten exposure is happening on a regular basis, it is doubtful that blood antibodies would show up elevated in testing. It takes time for them to build up to detectable levels.
    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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