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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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