cwnhokie

We went to see a new pediatrician the other day.  She was wonderful.  Actually spent 2 hours with us and worked right through lunch.  She reviewed his labs and found that between what the pediatrician had done and what the immunologist had done that he did have the complete panel for celiac testing.  She said that with that being negative and his negative scopes and biopsies that it is highly unlikely that he has celiac.  We also had a follow up with the integrative doc to discuss his test results.  She says his tests showed he's highly sensitive to cows milk and gluten.  He's been gluten and dairy free for a month and a half and we've seen maybe a small positive change but not a lot and he still has a good day or two and then crashes for a week.  I don't know how much I'm buying into what the integrative doc had to say.  She wants him on herbs, vitamins, and nystatin for a yeast overgrowth.  The new pediatrician said might as well try it for a month since we are this far in and see what happens.  In the mean time she is testing him for Cushings Syndrome.

Thank you for all the helpful replies.  He has been gluten and dairy free for a little over a month and we've been doing all meals at home to avoid any issues or unnecessary temptations.  I was kind of hoping we could finally get out for a meal at one of our previous favs.  I did find a taco restaurant in town that speaks English and was able to get him some things there.  And today we ventured out to Chik Fil A so that was exciting for him.  He has had a bad week, so feeling bad also made him miss his favorite food more.  We are not sure at this point if he is gluten sensitive or there is still some possibility of celiac, so it's just hard right now for him going through this not really knowing if it's helping or not.

My 12 year old has been gluten and dairy free for about a month.  We used to frequent a Mexican restaurant in town.  He has been doing wonderful but the last few days has been really down about what he is missing.  I would love to be able to take him to the mexican place but when I tried to ask them about gluten they just looked at me and smiled.  I asked if they make their chips fresh and he said yes and smiled.  Then a few minutes later I got 3 new baskets of fresh chips.  Any suggestions for how to figure out what is safe for him to eat?  I thought about having a friend who speaks spanish try to translate for me but I'm not sure if that will work either.

The GI said that there could still be something in the small intestines that he couldn't get to with the scope.

My 12 year old son has been sick for about a year and getting progressively worse.  He had mono in February of last year and has been sick ever since.  He went from having a few bad days every couple weeks to having one or two good days a week.  He is currently on home bound for school.  He complains of nausea, diarrhea, constipation, headache, muscle aches, joint pain, fatigue and brain fog.  He had a kidney stone in January.  He has also gained about 40 pounds in the last year.  We have seen an immunologist, urologist, gi, and an integrative medicine doc.  He has had lots of blood work although the GI said his celiac testing was incomplete.  I haven't been able to get copies of that blood work from his pediatrician.  He had a stool sample that showed inflammation and blood and then an endoscopy and colonoscopy that was normal.  The biopsies were normal too.  The integrative medicine doc said that he is highly sensitive to cows milk and gluten and to start a dairy free gluten free diet.  He's been doing that for 4 weeks and have done really well being very careful about what he is eating.  We saw some improvement in the first week, then it's kind of stalled.  He played basketball for a few hours a few days last week which is a huge improvement but once he's done he can hardly move and whole body aches, especially his joints.  He's barely gotten off the couch the last few days so we are both discouraged.  I've been researching and I've been reading that the test for gluten and casein sensitivity is not accurate so I wonder if we are doing all this for nothing.  I'm wondering if it could still be celiac, we haven't gotten all the results back from the integrative medicine doc, we go back next Monday.  She also did what I think is a genetic test for celiac.  We were encouraged initially but had hoped to see more improvement by now.  Any thoughts?

Update

The GI did another stool sample which came back normal this time.  We went to see an interative medicine doc who ran a bunch of tests.  We haven't gotten everything back yet but she said that she has gotten back a test that says he's highly sensitive to cow's milk (normal <2 he was 16.8 and lesser to gluten (normal <2 he was 7) She recommended that he have no dairy and less if not eliminate gluten.  So he has been gluten and dairy free for about 2 weeks, we thought we saw some improvement in the first week and then he had a few bad days again, but not as bad as before.  He has not gotten back to as good as he was the best day last week and today he says he thinks he may have a stomach bug because he is so nauseous.   I've been trying to research what these tests actually mean and have found lots of conflicting info.  I'm so confused and frustrated and so is he.  Last Tuesday he had lemonade from walmart that said it could contain trace amounts of wheat and milk so we were blaming that, but I'm pretty sure his diet has been clean since then.  The dr also said his vitamin d was low and that his neurotransmitters where very interesting.  We go back on the 30th to get all the results.  He's been to school twice since Christmas for an hour each time and is on home bound.  He hasn't been participating in any activities like sports or scouts.  

all the biopsies came back normal.  He says that doesn't correlate with the stool sample findings of blood in the stool and inflammation in the gut and he doesn't know why.  said there maybe something going on in the part of the small intestine where they can't get the scope.  Said we could get a better look with an mri or a capsule endoscopy.

I'm just grasping for answers while we try to figure out what is going on with my 12 year old son.  He has been getting progressively sicker over the last 6 months to a year.  He complains of nausea, vomiting, headache, diarrhea, chills, hot flashes, fatigue and he just got over a kidney stone.  His episodes have been more and more frequent.  6 months ago it was for a few days every few weeks, then for a few days every week, now he feels good maybe a day or two a week.  He is now on home bound instruction for school.  Could it be Celiac that is making him feel this lousy?  Thanks!

Hi there,

This forum seems to be full of good info.  I'm not sure I have enough info to properly ask my question though, but I'll try.

My son has been feeling badly for about a year.  He has had GI symptoms for about 6 months.  He has nausea, diarrhea, headache, fatigue, body aches, chills, hot flashes, weight gain, and most recently a kidney stone.  He is 12.  So far all of his blood work has come back normal.  He had a blood test for celiac but I can't remember what it was exactly and my dr hasn't given me the report.  They did fax it to his GI and he said that what was done was normal but that it wasn't complete.  He had a stool sample that showed inflammation in the gut and microscopic blood so he had an endoscopy and colonoscopy yesterday.  The GI said visually everything looked good.  We are now waiting on biopsy results.  Is it still possible that the biopsy will show celiac when everything else has been normal so far?  Just trying to figure out what to prepare for.  On one hand we are hoping that is not it, but on the other hand we are getting pretty desperate for answers.  He is currently on modified home bound for school and is no longer participating in sports.  Thanks for you help!