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My 12 Yr Old Son Has Glutant Intolerant Symptoms But Diagnosed Psychological.
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My son came home from school one day feeling really yucky. He went straight to bed. He has since been out of school for two months. In the beginning he was sleeping alot like 12-14 hrs a day, stomach pain, joint pain in elbows and knees, muscle pain in legs, bad headaches and short tempered. We took him to see his pediatrician and they did a blood test, urine test and a sinus culture. They tested for mono, flu, lymes disease, Epstein Barr virus and everything came back negative. Brought him back the following week and they tested for autoimmune diseases and iron deficiency. Test came back negative for autoimmune and positive for iron deficient. He was put on 325 mg of iron. This helped so he is not sleeping as much but now has trouble falling to sleep. The pediatrician then referred us to a pediatric rheumatologist. They checked him out and said they saw no sign of swelling in his joints. They thought that it may have been a virus and that he will eventually feel better. In the meantime I spoke with the school and requested that my son have a tutor until he felt better. The school inturn requested a doctors excuse before they would agree. The pediatrician spoke with the school and said it may be viral but were leaning towards a psychological problem. The school then requested that my son be evaluated by a counselor before they would agree on any more ttutoring. So tomorrow we are off to see a counselor. This whole time I've been doing my own investigating by reading "what's eating my child" because i do not believe he has a psychological problem. Thanks to this book my son has been gluten free for about a week in hopes that this is the problem. No improvements yet. Anyone have a similar diagnosis? Any ideas on how to get his pediatrician to change her diagnosis?

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Did you have them run the tests for celiac when he had all the other ones done?

Many of us have been told that its "all in our head", when in reality, it wasn't. I would push to find a new doctor for him to see.

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If your son is celiac, and you want an official diagnosis for him, you will have to have him continue eating gluten for the testing to be accurate. The antibodies the tests look for start to disappear in the absence of gluten. Stomach pain, joint pain, migraines, irritability, iron deficiency.... all of these can be celiac and he should be tested for it before he goes gluten free, because to restart gluten later could make him very sick.

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Did you have them run the tests for celiac when he had all the other ones done?

Many of us have been told that its "all in our head", when in reality, it wasn't. I would push to find a new doctor for him to see.

No, at that time I hadn't yet reached out to my friends. My friends are the ones that suggested I checkout that book and told me it sounded like a gluten allergy.

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If your son is celiac, and you want an official diagnosis for him, you will have to have him continue eating gluten for the testing to be accurate. The antibodies the tests look for start to disappear in the absence of gluten. Stomach pain, joint pain, migraines, irritability, iron deficiency.... all of these can be celiac and he should be tested for it before he goes gluten free, because to restart gluten later could make him very sick.

I probably should have him tested for celiacs instead of just going gluten free without a diagnosis. If I don't he will always be labeled by the pediatrician and school as psychological. I don't want that for him. Thank you for your input.

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When my son was 12 he had a virus that lasted all summer. Everytime I took him to the doctor he did have an ear infection (swimmer's ear)present too. Toward the end of the virus, the body trunk rash finally showed up. (The doctor had me really freaked out suggesting West Nile.) Looking back he did at one point have crazy red cheeks like someone had slapped him = Fifth's Disease (the last of the usual childhood virus list) That is probably the virus that hit him at a really bad time (growth spurt time) He was miserable and kept trying to get out to sport practice. In the evening the fever would spike (98 to 100 degrees) and he would vomit. This started the end of June and He started looking like himself again in October. (About the 2nd or 3rd week of October is when the rash finally showed up.)

Lyme disease testing is not always accurate, so I would get to a specialist for further testing for that. Testing for Celiac, needs a full panel and I would go for a Ped. Gastro. specialist.

From the tests run she showed have results of immune system blood cell elevations showing infection fighting?

I hope you have a reasonable counsler, that knows a sick child does not act like themselves and a doctor that doesn't have compassion for a sick patient would be dumb enough to say "It;s all in the head"

Really my kid willingly was playing football (bruises are "trophies" and proof you did your job blocking) and this virus and ear infection had him in tears with the pain.

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My son came home from school one day feeling really yucky. He went straight to bed. He has since been out of school for two months. In the beginning he was sleeping alot like 12-14 hrs a day, stomach pain, joint pain in elbows and knees, muscle pain in legs, bad headaches and short tempered. We took him to see his pediatrician and they did a blood test, urine test and a sinus culture. They tested for mono, flu, lymes disease, Epstein Barr virus and everything came back negative. Brought him back the following week and they tested for autoimmune diseases and iron deficiency. Test came back negative for autoimmune and positive for iron deficient. He was put on 325 mg of iron. This helped so he is not sleeping as much but now has trouble falling to sleep. The pediatrician then referred us to a pediatric rheumatologist. They checked him out and said they saw no sign of swelling in his joints. They thought that it may have been a virus and that he will eventually feel better. In the meantime I spoke with the school and requested that my son have a tutor until he felt better. The school inturn requested a doctors excuse before they would agree. The pediatrician spoke with the school and said it may be viral but were leaning towards a psychological problem. The school then requested that my son be evaluated by a counselor before they would agree on any more ttutoring. So tomorrow we are off to see a counselor. This whole time I've been doing my own investigating by reading "what's eating my child" because i do not believe he has a psychological problem. Thanks to this book my son has been gluten free for about a week in hopes that this is the problem. No improvements yet. Anyone have a similar diagnosis? Any ideas on how to get his pediatrician to change her diagnosis?

Did the ped share with you that he/she thought it was psych? or did they only report that to the school? The second option would be totally unacceptable!
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When my son was 12 he had a virus that lasted all summer. Everytime I took him to the doctor he did have an ear infection (swimmer's ear)present too. Toward the end of the virus, the body trunk rash finally showed up. (The doctor had me really freaked out suggesting West Nile.) Looking back he did at one point have crazy red cheeks like someone had slapped him = Fifth's Disease (the last of the usual childhood virus list) That is probably the virus that hit him at a really bad time (growth spurt time) He was miserable and kept trying to get out to sport practice. In the evening the fever would spike (98 to 100 degrees) and he would vomit. This started the end of June and He started looking like himself again in October. (About the 2nd or 3rd week of October is when the rash finally showed up.)

Lyme disease testing is not always accurate, so I would get to a specialist for further testing for that. Testing for Celiac, needs a full panel and I would go for a Ped. Gastro. specialist.

From the tests run she showed have results of immune system blood cell elevations showing infection fighting?

I hope you have a reasonable counsler, that knows a sick child does not act like themselves and a doctor that doesn't have compassion for a sick patient would be dumb enough to say "It;s all in the head"

Really my kid willingly was playing football (bruises are "trophies" and proof you did your job blocking) and this virus and ear infection had him in tears with the pain.

Good to know about the Lymes diisease testing. Our dog actually had a deer tick on him a few weeks before my son got really sick. As far as all the testing, the doctor never showed us the results. The nurse told us the results over the phone and all she said was that all the tests came back negative. I will ask that question when I call for a referral on Monday for a specialist.

The counselor seemed like she believed my son and understood our concerns. He sees her again on Saturday.

Thanks for your input.

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Did the ped share with you that he/she thought it was psych? or did they only report that to the school? The second option would be totally unacceptable!

The nurse called and told us that my son should see a counselor. I spoke with the school nurse and she said that the doctor implied it was psychological. The doctor said she didn't exactly say that. Regardless that is how everyone is treating this. To top it all off I just found out from my daughter that my son isn't really seeing a tutor. He is actually in OSS (out of school suspension). Apparently the school is mad that my son has missed so much school so this is how he is being treated. My daughter was told this by the bus driver. He actually showed her the letter passed down from the school to not let my son ride the bus, even if he wanted to try and come back, because he is in OSS. I am so furious about this. Oh yeah one more thing....the school nurse called on Friday and spoke with my husband and told him that it is our responsibility to get our son to school even if we have to physically bring him in kicking and screaming. Isn't that nice. I'm sure the teachers would appreciate that. What a mess.......

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What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:

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Have you discussed "homebound" student? This is when your student has medical issues attendance is not required. The student works from home. A teacher is does a home visit once a week with the school work.

I discussed this with the hospital counselor when my daughter had a rough year of hopsitalization and the later endoscopy procedures. She was just starting to miss too many days of school. In the end I now have my kids in Public Charter Cyber School. They have public school teachers on the computer, e-mails and phone calls for communication, and they stay home with a flexible schedule. Check your state to see if this is an option. Connections Academy has a tuition private school option and FREE public school in certain states.

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Homeschooling might be a good idea... some time to deschool (regain interest in learning without authoritive/parental pressure) might make a big difference. I know many families who have gone this route. we homeschool too.

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What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:

Your reply was more polite than I would manage being.....so i will simply agree!
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Have you discussed "homebound" student? This is when your student has medical issues attendance is not required. The student works from home. A teacher is does a home visit once a week with the school work.

I discussed this with the hospital counselor when my daughter had a rough year of hopsitalization and the later endoscopy procedures. She was just starting to miss too many days of school. In the end I now have my kids in Public Charter Cyber School. They have public school teachers on the computer, e-mails and phone calls for communication, and they stay home with a flexible schedule. Check your state to see if this is an option. Connections Academy has a tuition private school option and FREE public school in certain states.

I will look into Homebound student. Homeschool/cyber school sounds like a good option but not sure if this would even work for my family. My husband and I both work full time. Thank you for the information.

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What is going on with this school??? They have him on OSS - out of school suspension -- have told the bus driver he is not to ride the bus, have not informed you of the suspension or of the bus prohibition, but then the school nurse is telling you that you have to get your son to school kicking and screaming if necessary?? This does not compute. Why were you and your son not given notice of this suspension? Or the bus prohibition? For how long has he been (or not been) receiving this supposed tutoring? I don't think I have ever heard of such a mess. What right does the doctor have to discuss your son with the school and imply a psychological problem? NONE!!! That doctor needs to be pulled up right smart!! Like reported! And sued!

But first you need to go to the doctor's office and get a complete copy of all your son's medical records. Don't leave without them because they may try to alter them even - it has happened. I would go so far as to ask to look at them first before they go fiddle with them at the photocopier. Paranoid? Yes. But I have reviewed plenty of sets of altered medical records. :ph34r: And then take those records to some other doctor, preferably in another town, because of the "old boy" or in this case "old girl" network. They all back each other up. If the doctor "didn't exactly say" it was psychological, then why does everyone at the school think it was psychological. And the only time a doctor should ever discuss something like this is if the patient is perceived to be a threat to himself or others, which does not sound like your son. It sure sounds like she has violated his privacy. Although you may well feel this way yourself by the time you get done with this.

I am glad the counselor seems to have some common sense in this whole thing. Do you have to wait a whole week to see her again?

I don't think I have ever heard of such an appalling way to treat a child. How old is he? 12?? The poor little guy. I hope that gluten free helps him, that he gets to feeling better soon, that he gets a diagnosis and back to school where he belongs without a lot of hassle.

Sorry for the rant, but I am appalled. :blink:

My son received tutoring at the school for 2 hrs per day for one week. Then he tried to go back to school half days (the first three periods) but the nurse messed that up for him by not letting him call home to be picked up when not feeling well. Then Starting last friday he started tutoring again, at least that is what i was told by the nurse, but this time he is being bused to an on campus tutoring center. Which is full of high and middle school kids in OSS. Which is not one on one.

Unfortunately, at the beginning of every school year the school sends out letters to parents to have them sign off allowing the school to speak with doctors, picture rights, etc. Which of course I did.

Getting a copy of my sons records is a great idea. I will try and get out there this week. Thank you!

The counselor only works on Fridays and Saturday's.

This is all a nightmare. I just hope we find out whats wrong with my son.

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My son received tutoring at the school for 2 hrs per day for one week. Then he tried to go back to school half days (the first three periods) but the nurse messed that up for him by not letting him call home to be picked up when not feeling well. Then Starting last friday he started tutoring again, at least that is what i was told by the nurse, but this time he is being bused to an on campus tutoring center. Which is full of high and middle school kids in OSS. Which is not one on one.

Unfortunately, at the beginning of every school year the school sends out letters to parents to have them sign off allowing the school to speak wi th doctors, picture rights, etc. Which of course I did.

Getting a copy of my sons records is a great idea. I will try and get out there this week. Thank you!

The counselor only works on Fridays and Saturday's.

This is all a nightmare. I just hope we find out whats wrong with my son.

just because you signed that it was ok for the school to talk to the doc, doesnt make it ok that the doc shared with them things he/she hadn't shared with you!!!!!! ...and I am betting you won't sign that again!
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just because you signed that it was ok for the school to talk to the doc, doesnt make it ok that the doc shared with them things he/she hadn't shared with you!!!!!! ...and I am betting you won't sign that again!

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

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My husband asked to have written correspondence faxed to us between the school and the doctors office. The doctor wrote.....specific diagnosis: fatigue and joint pain of unknown etiology. Currently evaluating for anxiety as the cause. My husband has tried several times to speak with the principals at the school but they will not return his call. He is going to the school board and/or supervisor tomorrow.

Called doctors office today and ordered celiacs bloodwork to be done. Received paperwork via fax. How long should I wait before I have the bloodwork done? My son was gluten free for a little over a week but now back on gluten.

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If he is back on gluten and was off for only a week, I believe I would do it right away. Often a week is not long enough for the antibodies to retreat altogether. If the blood tests do come up negative (and by the way, make sure they do the full panel listed below):

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

insist on the endoscopy with biopsy, because that will often be positive when the blood work is negative. And even then, keep him on gluten with a homeschooling program until you can have him retested after six weeks at least back on gluten.

Let us know what the school board has to say. And I agree with the pp's - no more signing of blanket forms like that. Get your specific permission and I would want to be present, personally or on conference call, if this is the kind of stuff that is going on.

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

I would wonder if you can't revoke them now?? or would that potentially cause a "red flag", don't need to get CPS involved.
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If he is back on gluten and was off for only a week, I believe I would do it right away. Often a week is not long enough for the antibodies to retreat altogether. If the blood tests do come up negative (and by the way, make sure they do the full panel listed below):

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

insist on the endoscopy with biopsy, because that will often be positive when the blood work is negative. And even then, keep him on gluten with a homeschooling program until you can have him retested after six weeks at least back on gluten.

Let us know what the school board has to say. And I agree with the pp's - no more signing of blanket forms like that. Get your specific permission and I would want to be present, personally or on conference call, if this is the kind of stuff that is going on.

Took my son for bloodwork today. The pediatrician wasn't familiar with the blood testing for celiacs so she consulted with another doctor and they told her that a baseline was sufficient for first testing. He also said that our insurance would probably not cover the full panel without an elevated /positive on baseline tests. I guess we will have to wait til Monday for results.

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Took my son for bloodwork today. The pediatrician wasn't familiar with the blood testing for celiacs so she consulted with another doctor and they told her that a baseline was sufficient for first testing. He also said that our insurance would probably not cover the full panel without an elevated /positive on baseline tests. I guess we will have to wait til Monday for results.

By baseline, I take it they mean tTG and total serum IgA? I am aware there are often insurance restrictions on what will be covered. Sometimes.... if finances permit.... it pays to go off insurance to get some things. I am aware this may not be an option so don't let it upset you. I have been fortunate during the times I have had HMO insurance that I was able to go independently and pay for what I felt I needed rather than a faceless bureaucrat in an HMO office. Interestingly enough, one of the big honcho faceless HMO bureaucrats now has a face for me. When I looked up what happened to her (funny little side story here). She was the bane of my existence when I was trying to figure out my GI symptoms. I was stuck with her for five years because no other primary cares were taking new patients in my group. She told me my symptoms were all in my head, that it was perfectly normal to have explosive diarrhea five times a day :o , etc., etc., etc. And she was my gatekeeper to other medical professionals. The only referral she was willing to make was to a shrink :blink: So she eventually ended up losing the thriving practice she had purchased after it dwindled to nothing, got hired by Kaiser Permanente on the basis of her Stanford medical degree (hubs, cynical as ever, said she slept her way through med school - good-looking woman!), apparently didn't hack it there either, and is now, as noted before, one of the chief honchos still, in deciding who should get what treatment when :unsure::wacko: in the HMO hierarchy. Okay, end of story.

So wait and see what they did do, what the results were, come back and telll us, and we'll go from there :)

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Good Lord, what is wrong with these people?! Out of curosity how old is your son? I am guessing what the doctor is hinting at is a conversion disorder. So I would be very clear about what exactly the complaints are....right them down, for example, on Feb 2 at 9am: stated "left knee hurt, pain was a 8 on a scale of one to ten, was wincing, holding the knee and unwilling to move, regardless of the excitement to play with his friends that were over". You need to include WHERE it hurts, HOW MUCH it hurts, and the psychosocial pieces surrounding it. I am sure they are thinking this is a get out of school free card. If you can track this stuff and show it happens at home and else where when it is really something he wants to do that will help. Maybe what you need to do is persue the celiac diagnosis pathway and then just to get the school to calm down do a psych eval with an independent group. If they deem him not needing help them he will be in the clear with the school.

As for the insurance piece. The doctor knows NOTHING about how they will reimburse. There are 1000s of types of insurance, he/she is hardly an expert on it. Do NOT listen to them. They are trying to discourage you from doing this. My daughter is a celiac, we went to a GI and he was so rude to me. He bascially said my child didn't have the disease (even with high labs and a family history) and I pushed to hard to get an appt because their are children who are sicker and he was pissed that they put me on the calendar. Well you still accepted the appt so I deserve to be treated that way? You are the parent, NO ONE, I mean NO ONE knows your child better than you. It doesn't matter what these professionals have read in books or have experienced with other patient's you are the expert on your child's care. Keep persuing it, you are on the right track I bet.

If you have done the labs, trial a gluten-free diet this weekend. Why wait? Would you not do the diet if the labs are normal? Just give it a try. It's a diet, it can all be undone.

Good Luck, keep updating us.

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By baseline, I take it they mean tTG and total serum IgA? I am aware there are often insurance restrictions on what will be covered. Sometimes.... if finances permit.... it pays to go off insurance to get some things. I am aware this may not be an option so don't let it upset you. I have been fortunate during the times I have had HMO insurance that I was able to go independently and pay for what I felt I needed rather than a faceless bureaucrat in an HMO office. Interestingly enough, one of the big honcho faceless HMO bureaucrats now has a face for me. When I looked up what happened to her (funny little side story here). She was the bane of my existence when I was trying to figure out my GI symptoms. I was stuck with her for five years because no other primary cares were taking new patients in my group. She told me my symptoms were all in my head, that it was perfectly normal to have explosive diarrhea five times a day :o , etc., etc., etc. And she was my gatekeeper to other medical professionals. The only referral she was willing to make was to a shrink :blink: So she eventually ended up losing the thriving practice she had purchased after it dwindled to nothing, got hired by Kaiser Permanente on the basis of her Stanford medical degree (hubs, cynical as ever, said she slept her way through med school - good-looking woman!), apparently didn't hack it there either, and is now, as noted before, one of the chief honchos still, in deciding who should get what treatment when :unsure::wacko: in the HMO hierarchy. Okay, end of story.

So wait and see what they did do, what the results were, come back and telll us, and we'll go from there :)

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!

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Way to go Momma! I have been through a similar battle with my daughter. She has gone years with health problems; lost her hair at 4 diagnosed with alopesia, broke out in weird blisters, hundreds of them at 5, nothing helped. All the time I was taking her to pediatricians, and dermatologists. Terrible headaches were almost constant. Then at seven she broke out in severe excema all over her body, doctors said, some kids just get excema try eliminating things. We went a year without dairy, with no difference. Since then her headaches, bellyaches would send her screaming and itching and sleepless. I took her to the emergency room and demanded they test for evrything. Results were all negative and I don't think they tested for celiac. She missed a lot of school and although I spoke with them and kept them up to date most people thought it was psychological. I withdrew her from public school and did homeschool and then a new pediatrician suggested we try going without gluten. After two weeks her skin was almost totally clear, her headaches gone, her stomach aches gone and her sleep improved. She still has some excema but it is so much better. Unfortunately we didn't get her tested. I will never put her back on gluten. Our other daughter has been off gluten also to make it easier. The other day I let her have valentine candy and treats with her class and her eyes swelled shut. This freaks me out. Poor kids. Its so scary and worrisome and draining to be a parent when people all around you suspect you are making things up, that its in your childs head, that you are not feeding them a healthy diet when you really are more careful than most parents. It feels so good to be right. I hope everything works out. We moved all of our children to a charter school and I am so extremely happy to not have to deal with the public school district any longer!

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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