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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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    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
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