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Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.

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Glad things are working out better for your family.  Any question you can come up with someone here will tackle it.  (We have had ALL kinds of questions, so you might want to keep kids in the kids only sections.)

 

Keep an eye on the anemia.  There is a connection between Celiac and Pernicious anemia.  Pernicious anemia is caused when the gut lining (think Celiac damage) lacks the intrinsic factor to absorb vitamin B12.  So it is low iron, but not a lack of eating iron rich foods.  Current research is showing sublingual vitamin B12 can be as effective as B12 shots.  (when it comes to vitamin supplememts get the Methylcobalamin B12.  The other type is process with cyanide.  There is no known "toxic" level of B12 as too much would just be expelled from the body.

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Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.

 

 

Your doc wouldn't test for celiac?  Sheesh.  There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally.  If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors.  You want someone in your corner, not someone you have to do battle with all the time.

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We are on our second doctor. That is why I love this site! It gives me the confidence to move forward and not question what I am doing. I am in Canada so it is a different system with standardized care. That's the thing about the anemia - the nurse called to inform us and then went to ask the doctor when we should come for a retest and he said "no need". ????. We started with a Naturopathic Doctor today so I feel good. Will have to check out the kids forum - thanks.

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My doctor says he always checks anyone with low iron for Celiac Disease because it is often one of the major signs.

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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