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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Sunflower23

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

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Lots has happened in the past week. Here's an overview:

Results back from baseline bloodwork - negative

Referred to GI doctor and scheduled appointment

Met with counselor (2nd and last visit) - son doesn't like her. Doesn't say anything to help him.

Met with school - Threatened to call CPS. Bring it on we have nothing to hide, he is sick.

Met with GI doctor - ran more blood work and did an X-ray. Scheduled a hydrogen breath test for 3/11.

Met with pediatrician finally - thought that since she has never actually seen my son throughout (just diagnosing him) it was a good idea to Make her own diagnosis. Really? Anyway, she was pushing "adolescent medicine" therapy and medicine. We took the referral and prescription for the medicine. My husband thought it was best to be compliant at this point. That way they can't say we were uncompliant just in case they are right.

GI doctor called with results - his X-ray showed that his intestines were full with stool. Some of the bloodwork came back and showed my son was positive for having a wheat, corn, soy and peanut allergy. Plus a slightly elevated thyroid. Mothers intuition was right!

Went to pharmacist picked up medication to clean him out. Started on Thursday. He has already lost 10 lbs.

Sent the school an email of the results of the GI visit. It felt so good!

Pediatrician called with a referral for an allergist and adolescent medicine.

Adolescent medicine appointment scheduled for March 1st. Will cancel if goes back to school after break.

Will schedule appointment with allergist on Monday. They closed at 1:15 on Friday so I was unable to get appointment.

I feel so happy that we are finally getting to the bottom of his illness. A weight has been lifted off my shoulders. I'm starting to feel happy again. It takes such a toll on us parents as well as the kids. Thank you everyone who responded to my posts. I appreciate your advice and kind words. I will reply after my son has had his breathe test and allergist appointment. Thank you again!

I was afraid they might try the CPS card with you. Good luck.

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Lots has happened in the past week. Here's an overview:

Results back from baseline bloodwork - negative

Referred to GI doctor and scheduled appointment

Met with counselor (2nd and last visit) - son doesn't like her. Doesn't say anything to help him.

Met with school - Threatened to call CPS. Bring it on we have nothing to hide, he is sick.

Met with GI doctor - ran more blood work and did an X-ray. Scheduled a hydrogen breath test for 3/11.

Met with pediatrician finally - thought that since she has never actually seen my son throughout (just diagnosing him) it was a good idea to Make her own diagnosis. Really? Anyway, she was pushing "adolescent medicine" therapy and medicine. We took the referral and prescription for the medicine. My husband thought it was best to be compliant at this point. That way they can't say we were uncompliant just in case they are right.

GI doctor called with results - his X-ray showed that his intestines were full with stool. Some of the bloodwork came back and showed my son was positive for having a wheat, corn, soy and peanut allergy. Plus a slightly elevated thyroid. Mothers intuition was right!

Went to pharmacist picked up medication to clean him out. Started on Thursday. He has already lost 10 lbs.

Sent the school an email of the results of the GI visit. It felt so good!

Pediatrician called with a referral for an allergist and adolescent medicine.

Adolescent medicine appointment scheduled for March 1st. Will cancel if goes back to school after break.

Will schedule appointment with allergist on Monday. They closed at 1:15 on Friday so I was unable to get appointment.

I feel so happy that we are finally getting to the bottom of his illness. A weight has been lifted off my shoulders. I'm starting to feel happy again. It takes such a toll on us parents as well as the kids. Thank you everyone who responded to my posts. I appreciate your advice and kind words. I will reply after my son has had his breathe test and allergist appointment. Thank you again!

Scheduled allergist appointment for my son. Unfortunately they could not get him in until April 1st. We are willing to wait because I've heard alot of good things about this doctor. He goes to bat for the patient and won't give up until he finds out what is making them sick. The doctor is an immunologist. The other amazing thing is that this doctors wife is my mothers cancer doctor.

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Exactly, I thought the same thing and you are right i won't fill them out next year.

Revoke it. Now. In writing. Hand copies to all pertinent parties - principal, nurse, doctors. I'd also write a letter to all saying child is not allowed to speak to any of them regarding this matter without a parent present.

And quite frankly, I'd get an attorney. I know it sounds a bit much but some of these school districts are nightmares - too busy trying to cya which means they generally refuse to do what is right, in favor if what is by the book (and usually it's a bad book).

An attorney experienced dealing with delinquency issues and/or that district could make all of this go away.

At a minimum I'd start keeping detailed records of who/what/where regarding doctors and school. I'd even record meetings/convos with your handy cell phone. Just don't tell anyone you're doing it - may or may not be legal in your state (1 party consent).

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I can't really address the tutoring or home schooling.  Daughter wants to home school like mad but I think it's a bad idea for her.  I can address the psychological aspect though.  I took her to the walk in clinic.  I can't remember all of what was wrong with her but I do remember her complaining of severe ear pain.  Dr. didn't look in her ears but said since she didn't feel up to going to school or dance class she was obviously depressed and needed counseling.  She was going to put in for a referral for her.  We both just sat there dumbfounded!  In fact the Dr. same into the room looking and sounding depressed.  She was literally dressed in all beige from head to toe.  Had a hangdog look on her face and sounded very sad as she talked to us.

 

Two or three days later, I took daughter back to the walk in clinic because by now she was literally in tears from the pain.  And she's not normally a crier.  Saw a different Dr. who freaked when she looked in her ears.  She said they were both raging with infection.  Wanted to know the name of the Dr. that daughter saw.  When I told her, she said that she didn't know where this woman came from.  She was not one of the regular Drs. there and thought that they brought her in from some other location.  To disregard what the other Dr. said and she would cancel our referral because she didn't think daughter was depressed at all.

 

But our frustration?  She keeps getting sick.  Her dad and my mom both think she is faking illnesses to get out of school.  I do not think so.  She certainly isn't enjoying her time here at home.  Either sleeping the day away with a fever or spending most of her time on the toilet or hunched over a bowl.  The Drs. keep telling us that is a virus.  And it is true that when she stays home and is not in contact with others like she is at the school or the dance studio, she tends not to pick things up that make her sick. 

 

She has been to the gastroenterologist twice.  He thinks it is a food allergy or intolerance.  And it could be.  She has multiple food intolerances.  She was tested for food allergies but only to those foods that we knew she was intolerant to.  Nothing else and those tests showed nothing.  Gluten and wheat used to be issues for her but they seem not to be now.  We just don't know what the culprit is.  And of course since I bought the new notebook to start another food diary, she hasn't been sick at all.

 

There is another girl of her age at her dance studio who is home schooled.  Perhaps not so much because of her illnesses but because she dances and assists in various classes far more than my daughter does.  But...  She does have stomach issues almost all the time.  She was told at first that it was a dairy allergy and then told it was not.  She wound up going to my daughter's same gastro and he told her she was depressed and needed to be on a med for that.  I don't think this girl is depressed.  But she is very frustrated and tired of not feeling well.

 

My daughter and this other girl are 14.  Unfortunately once they reach about age 12 and up, some Drs. will just try to pass symptoms off as physchological and specifically depression.  That to me is greatly annoying.  I even had a teacher send home a note to me telling me that she thought my daughter was depressed,  What really was going on there was that my daughter was angry and frustrated again and again by this teacher who kept trying to reward her with foods she couldn't eat.  And forcing her to touch foods that she shouldn't, like Twizzlers or pizza for some sort of math thing they were doing.  I really thought this teacher would get it because she told me that she had a dairy allergy.  She also added that it was fine because she could have goat's milk and cheese.  I told her that my daughter and I could not even have these.  She just sort of shrugged.  I can not tell you how many times I have spoken to or written to teaches and told them things like...  Please do not give her food.  Please do not make her touch dairy, or wheat, or eggs, or...the whole rest of the list of things she is intolerant to.  But the still make her do it and tell her they will fail her if she doesn't.

 

I hope you can get your son's problems sorted out.  We're still working on ours.

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I can't really address the tutoring or home schooling.  Daughter wants to home school like mad but I think it's a bad idea for her.  I can address the psychological aspect though.  I took her to the walk in clinic.  I can't remember all of what was wrong with her but I do remember her complaining of severe ear pain.  Dr. didn't look in her ears but said since she didn't feel up to going to school or dance class she was obviously depressed and needed counseling.  She was going to put in for a referral for her.  We both just sat there dumbfounded!  In fact the Dr. same into the room looking and sounding depressed.  She was literally dressed in all beige from head to toe.  Had a hangdog look on her face and sounded very sad as she talked to us.

 

Two or three days later, I took daughter back to the walk in clinic because by now she was literally in tears from the pain.  And she's not normally a crier.  Saw a different Dr. who freaked when she looked in her ears.  She said they were both raging with infection.  Wanted to know the name of the Dr. that daughter saw.  When I told her, she said that she didn't know where this woman came from.  She was not one of the regular Drs. there and thought that they brought her in from some other location.  To disregard what the other Dr. said and she would cancel our referral because she didn't think daughter was depressed at all.

 

But our frustration?  She keeps getting sick.  Her dad and my mom both think she is faking illnesses to get out of school.  I do not think so.  She certainly isn't enjoying her time here at home.  Either sleeping the day away with a fever or spending most of her time on the toilet or hunched over a bowl.  The Drs. keep telling us that is a virus.  And it is true that when she stays home and is not in contact with others like she is at the school or the dance studio, she tends not to pick things up that make her sick. 

 

She has been to the gastroenterologist twice.  He thinks it is a food allergy or intolerance.  And it could be.  She has multiple food intolerances.  She was tested for food allergies but only to those foods that we knew she was intolerant to.  Nothing else and those tests showed nothing.  Gluten and wheat used to be issues for her but they seem not to be now.  We just don't know what the culprit is.  And of course since I bought the new notebook to start another food diary, she hasn't been sick at all.

 

There is another girl of her age at her dance studio who is home schooled.  Perhaps not so much because of her illnesses but because she dances and assists in various classes far more than my daughter does.  But...  She does have stomach issues almost all the time.  She was told at first that it was a dairy allergy and then told it was not.  She wound up going to my daughter's same gastro and he told her she was depressed and needed to be on a med for that.  I don't think this girl is depressed.  But she is very frustrated and tired of not feeling well.

 

My daughter and this other girl are 14.  Unfortunately once they reach about age 12 and up, some Drs. will just try to pass symptoms off as physchological and specifically depression.  That to me is greatly annoying.  I even had a teacher send home a note to me telling me that she thought my daughter was depressed,  What really was going on there was that my daughter was angry and frustrated again and again by this teacher who kept trying to reward her with foods she couldn't eat.  And forcing her to touch foods that she shouldn't, like Twizzlers or pizza for some sort of math thing they were doing.  I really thought this teacher would get it because she told me that she had a dairy allergy.  She also added that it was fine because she could have goat's milk and cheese.  I told her that my daughter and I could not even have these.  She just sort of shrugged.  I can not tell you how many times I have spoken to or written to teaches and told them things like...  Please do not give her food.  Please do not make her touch dairy, or wheat, or eggs, or...the whole rest of the list of things she is intolerant to.  But the still make her do it and tell her they will fail her if she doesn't.

 

I hope you can get your son's problems sorted out.  We're still working on ours.

It is very frustrating at the least. I just wish doctors would just listen to what us parents have to say. We know our children better than anyone. Do the tests we ask for, and if we are wrong then proceed on what they think should be done. It would eliminate months of seeing specialists that are not needed. We are in our third month of bouncing around from one doctor to another and the very doctor that my friend recommended for my Son in the very beginning is the one we are seeing April 1st. It just makes me so angry! We could have avoided all this.......my son could have been tested and back to school already. Instead he has missed 40 school days. He has been keeping up with most of his work and some he has been exempted from. The teachers have been very helpful theses past few months, I just wish I could say the same for the principal, nurse and school counselor. I would have thought the nurse would be more sympathetic since she has a child with celiacs.

Hopefully this next doctor will get to the bottom of all that's ailing my son and not give up until he does. I want my son to be able to go back to being a kid again and not have to worry about what's wrong with him and wonder why many don't believe him that he really is medically sick.

Good luck with your daughter, I hope you get the answers you need to help her. Thank you for replying to my post. It's therapeutic talking to people with the same frustrations.

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

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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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