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Pamela KP

Malabsorption Disorder - sign of celiac?

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My son is 14.  We knew from when he was a tiny baby that he had food allergies.  I nursed him and cut nearly everything out of my diet besides meat and veggies and was on a strict rotation diet.  It took several years but we got his skin and digestion on a good track.  We simply decided to avoid gluten and assume he was celiac because we didnt want to do the stomach biopsy.  As he got older we moved over seas, we often traveled to countries that gluten free was impossible to explain.  I brought as much food as I could and we managed.  As he got older he was so curious and had been doing great for so many years that my pediatrician convinced me that he had likely never been celiac and was probably gluten sensitive.  His blood work did not show elevated antibodies and his eczema was doing great and he'd never had stomach pain and it had been years since he had diarrhea.  So as we traveled we let him eat some gluten here and there out of necessity.  he occasionally had skin flair ups and even started getting a little "crabby" or "mean".  so I would try and make him gluten free.  But once he was at school, I had no idea if he was eating my food.  His dad wasn't strict either.  So again we went through a cycle of him having "mild" symptoms.  Yet the doc still called it "a gluten sensitivity" issue.  Fast forward a few years. we moved to the US in 2015, we were so happy to have so many more gluten free options.  But My then 13 year old was ecstatic to have so many new choices at his food finger tips.  It has been over a year of an uphill battle to get him to stay strict and ask questions before eating things.  He has had horrific acne (mostly on his sides and back, now some on his face), incredibly bad mood swings, Anger outbursts, aggressive defiance when adults ask things of him.  We finally took him off gluten and had some testing done.  His antibodies still show very slight changes, but do not show celiac.  But we did some micronutrient testing and found out he has Malabsorption Disorder and that he is incredibly deficient in nearly every possible important micronutrient (selenium, selenium, All B vitamins, manganese, L glutamine, Oleic acid, Serine, folate, choline, Vitamin K2, Inositol...the list goes on! ) The anger has gotten so bad he was asked not to attend school for a while until this is sorted out.  Does any of this sound like Celiac?  We are trying to get the Pediatrician to order a stomach biopsy...can you tell me what kind of specialist I need to take him to?  Where should I go with this?  Is all of this a possible reaction to celiac and a destroyed belly/gut?

Edited by Pamela KP

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1 hour ago, Pamela KP said:

My son is 14.  We knew from when he was a tiny baby that he had food allergies.  I nursed him and cut nearly everything out of my diet besides meat and veggies and was on a strict rotation diet.  It took several years but we got his skin and digestion on a good track.  We simply decided to avoid gluten and assume he was celiac because we didnt want to do the stomach biopsy.  As he got older we moved over seas, we often traveled to countries that gluten free was impossible to explain.  I brought as much food as I could and we managed.  As he got older he was so curious and had been doing great for so many years that my pediatrician convinced me that he had likely never been celiac and was probably gluten sensitive.  His blood work did not show elevated antibodies and his eczema was doing great and he'd never had stomach pain and it had been years since he had diarrhea.  So as we traveled we let him eat some gluten here and there out of necessity.  he occasionally had skin flair ups and even started getting a little "crabby" or "mean".  so I would try and make him gluten free.  But once he was at school, I had no idea if he was eating my food.  His dad wasn't strict either.  So again we went through a cycle of him having "mild" symptoms.  Yet the doc still called it "a gluten sensitivity" issue.  Fast forward a few years. we moved to the US in 2015, we were so happy to have so many more gluten free options.  But My then 13 year old was ecstatic to have so many new choices at his food finger tips.  It has been over a year of an uphill battle to get him to stay strict and ask questions before eating things.  He has had horrific acne (mostly on his sides and back, now some on his face), incredibly bad mood swings, Anger outbursts, aggressive defiance when adults ask things of him.  We finally took him off gluten and had some testing done.  His antibodies still show very slight changes, but do not show celiac.  But we did some micronutrient testing and found out he has Malabsorption Disorder and that he is incredibly deficient in nearly every possible important micronutrient (selenium, selenium, All B vitamins, manganese, L glutamine, Oleic acid, Serine, folate, choline, Vitamin K2, Inositol...the list goes on! ) The anger has gotten so bad he was asked not to attend school for a while until this is sorted out.  Does any of this sound like Celiac?  We are trying to get the Pediatrician to order a stomach biopsy...can you tell me what kind of specialist I need to take him to?  Where should I go with this?  Is all of this a possible reaction to celiac and a destroyed belly/gut?

Welcome! 

There are over 200 symptoms attributed to celiac disease and those often overlap with other autoimmune disorders.  The only way to know is to have your son tested.  Learn about testing:

http://www.cureceliacdisease.org/screening/

Because he has been gluten free or light, he might need to do a supervised challenge under at Gastroenterologist's care and supervision.  Learn about a challenge which requires 8 to 12 weeks for the blood test or two to four weeks for the endoscopy.  

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Who diagnosed him with a malabsorption disorder?  What was the root cause?  

I hope this helps.  

 

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you need go to gastrial interplogy both my dad n i diagnosed their! we hv similar yet cery different symtoms! they should do bloodwork for celiacs an endoscopy probably! then focus on vitamines!

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ps it took me 8 years to get proper diagnosis! my docs soley focused on vitamine d and sometimes iron! both were low at times! not once occured to them do proper celiacs test till my dad met his doctor!!

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I would turn into Mr. Hyde when I ate gluten extremely angry like a switch was flipped, I was confused often and found my thoughts actually looping like a broken record. LONG trauma story there. I used to have acne like bumps on my face and even on my back and chest, I have not had one in years since going gluten free, I take that back I dairy is also a trigger for those bumps I think, as I recall I trialed my dairy issues a year or so ago and got a few to pop up on my back and chest.

As cycling lady suggested, I would look at doing a gluten challenge and getting officially tested. The nutrient issue is a huge thing, I still supplement for many vitamins and have constant low iron and take massive amounts of magnesium to keep regular and prevent the muscle and skin issues I get when it dips low.

On B-vitamins this will also help with stress, Liquid Health Stress & Energy, and Liquid Health Neurological Support 1tbsp each 3 times a day.

Magnesium, depends on stomach issues. I use a rotation but either Natural Vitality Calm, this can be a bit harsh on some peoples guts and you need to start dosing at 1/4tsp a day and slowly go up to the full dose over a week or so. If gas and D result then it is too much or too harsh, My other suggestion is Doctors Best Magnesium, bit worse tasting blended in a drink but easier on the gut. just follow dosing on this not adjustment needed.

 

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Very helpful everyone.  I am struggling to get him in with a  GI.  I can't believe how hard it is to see some of these specialists.  @Ennis TX he takes Magnesium every day, but I could try the brand you discussed.  @cyclinglady, it was actually his Psychologist who did some micronutrient blood tests to try and pin point his anger and absolute defiant behavior towards simple requests (please sit here not there, please button the top button of your shirt).  He would get stubborn and positively shaking in anger and it would last up to 2 hours and then he would still be made and sullen the rest of the day.  I am trying as hard as I can to get him in with a GI doc soon, but so far no luck.  I hate to keep taking him to ADHD and Dyslexia and Psychologist specialists because if his behavior is linked to Celiac then those results are not accurate anyway.  But I have to keep trying everything I can.  Thanks everyone!

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