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My 12 Yr Old Son Has Glutant Intolerant Symptoms But Diagnosed Psychological.


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39 replies to this topic

#31 mommida

 
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Posted 24 February 2013 - 09:24 AM

Hang in there moms (posters and lurkers)!

 

If school officials didn't believe me at first about my daughters illness and warnings to keep those foods away from her, they did when she vommitted.  When she had to be hospitalized on average of once a school year for dehydration.  She would go back to school with I.V. scabs and bruises.  It was also a Christian school and the pastor would visit at the hospital.

 

Even after she has been diagnosed with Celiac and Eosinophilic Esophagitus, public school environment is just too much for her system.  (I had made the decision if she ever needed a feeding tube she would not be in the germ filled school environment with an open port in her gut.  Thank God it did not come to that!) 

 

There are other alternatives for education.  I contacted the hopsital social worker and asked what to do about the missed school days.  (At least I knew I was starting a positive proactive paper trail.)  You can get your student a "homebound" education.  (At least that is the law in my state)  Speaking with a hospital counselor can also help blow the whistle on these piss poor doctors!  The counselor can also help you inform the school you are looking into/ aware of your patient's rights.  (so it may be better that you don't have a history with this hospital.)


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Michigan

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#32 shadowicewolf

 
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Posted 24 February 2013 - 09:42 AM

For the last three years of high school, i was home schooled through an online school. One of the best decisions ever made. I had to keep a certain gpa (3.5 or higher) and get my work done. There would have been no way i could have handled another three years of high school at that time.

 

I eventually graduated third in my class with a 3.89 gpa i believe (unweighted).

 

Of course, a lot of things i did were similar or the same as they would be in a public school, such as doing experiments for physics class, using a simulated chemistry lab on the computer, or working on massive power points for projects.

 

When i was sick, i could take all the time i needed. There was a certain amount of work that had to be done by the end of the quarter, and as long as i got it done, there were no issues.

 

It depends on the child, i believe, whether or not schooling at home is successful or not. It can't hurt to try it either.


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#33 mommida

 
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Posted 25 February 2013 - 08:08 AM

My kids are in an on-line public charter cyber school.  I think we are going to be switching to a closer on line school so the kids can go to a brick and mortar building for lab experiments and face to face teacher/ tutor work.  It is challenging, but it seems to be the best for my kids.  (My daughter has multiple foods to avoid and sleeping difficulties because of pain associated with Eosinophilic Esophagitus ~ think of severe heartburn the is worse in a prone position.)


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#34 Sunflower23

 
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Posted 14 March 2013 - 03:18 AM

Update: after colon clean out my son had two good weeks. One week was school break in which he was tutored and the next week he actually went to school. Now he's back to feeling crappy again and stuck at home. Hydrogen breath test came back negative. Still waiting to see allergist on April 1st. In the meantime we are working with the social worker at the hospital and adolescent medicine to keep the peace with the school and to help My son cope with his pain. For a while the school called me almost daily to remind me that my son is illegally excused from school. Like i needed to be reminded. Not getting much help from pediatrician, there's a big surprise. I remain hopeful that in a couple weeks we will get some answers, my son will be on the mend and we can put this all behind us.
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#35 Sunflower23

 
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Posted 06 April 2013 - 04:49 AM

Went to allergist. My son was tested for food and environmental allergies. Enviromental testing came back he's allergic to grass, most tree pollen, cats, dogs, ragweed, etc. The foods tested - corn, wheat, soy and peanuts came back negative. Does that mean he is definitely not gluten intolerant? He also went in for an ultrasound on his GI tract and everything came back normal.
He still has stomach pain and is taking miralax daily. Could he still be glutant intolerant even though test after test has been negative? Anyone have these same results and went on a glutant free diet anyway and felt better?
My next step is glutant free diet and see what happens.......
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#36 mommida

 
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Posted 06 April 2013 - 05:08 AM

Yes he can still be gluten intolerant.  He just doesn't have a classic "allergic" reaction.  (Since my daughter truely isn't "allergic" to anything she just has an autoimmune reaction to "triggers" and diagnosed with Celiac and Eosinophilic Esophagitis I didn't research into the true allergic reactions that show up in allergy testing.  One sign of allergic reaction is histamine levels.) 

 

Try and get a hard copy of the test results.  Some of the test ranges can explain the reaction range and why that allergen is positive for an allergy diagnoses.  Which testing was done?  Blood, skin prick test, Rast, or long term tape baby food on his back for a week or so?

 

At this point I would not rule out Non Celiac gluten intolerance (NCGI).  This is becoming more recognized by the medical community.  From what I have read this seems to have a higher connection to nuerological symptoms.

 

When my daughter was going through these symptoms, the ped. gastro. wanted her tested by a nuerologist for "abdominal migraines".  Since she was diagnosed with Eosinophilic Esophagitis, I did not pursue testing with the nuerologist.  (It seemed obvious the type of damage her body was going through was consistant with the gut pain, headaches, and tiredness, and so on to the malabsortion of nutrients too.)

The testing for abdominal migraines seemed murky to me too.  She would have to basically test negative for any and all other disorders to be diagnosed abdominal migraines.


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#37 Sunflower23

 
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Posted 06 April 2013 - 08:36 AM

RAST testing came up weak positive for wheat, soy, peanuts and corn. The skin prick test just had a tiny red dot at each of those spots, the nurse said it was a negative reaction. Although now that i think about it....a couple tree pollens that came up small dots were retested by injection and he ended getting hives from those.
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#38 Juliebove

 
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Posted 07 April 2013 - 03:31 AM

Similar but different here.  Daughter has multiple food intolerances.  Used to be wheat/gluten but no longer.  She does have others.  We are careful with her diet.  Also has known pre-diabetes and a thyroid problem.  But...  She is sick all the time!  Often stomach problems but she also seems to catch everything that goes around.  They have done all sorts of test and now are saying that she just doesn't handle stress well and this is making her sick.  Well, maybe but...  I don't think so.  She is seeing a counselor next week.  We're grasping at straws here.  She's 14 now.


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#39 GottaSki

 
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Posted 07 April 2013 - 03:58 AM

I just read this thread AND am beyond angry for you and your family......everything Shroomie said - ditto!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#40 gfreemarketingguru

 
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Posted 12 April 2013 - 07:57 PM

So many of us have heard doctors label our/our childrens celiac pre-diagnosis as a virus. Get him tested, demand it...if it is celiac, a gluten-free diet will improve his health but it may take some time and may require additional supplements for deficiencies. My advice, don't accept doctors dx if as a mom your gut tells you they are wrong. My 1yr old would have died from his diagnosed virus had I not taken research intoy own hands, and yes, celiac was the answer. Also please research a kid named Taylor, I think he uses glutenaway as a social media name, he may be inspiring to yoy and your son.
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