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Does This Sound Like Celiac?


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24 replies to this topic

#16 GottaSki

 
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Posted 22 October 2012 - 03:10 PM

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

It is a good idea - perhaps he'll want to biopsy if it's positive :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

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

10/25/13 - MCAD

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

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

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

Get PROPERLY tested BEFORE REMOVING GLUTEN.

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

"LTES" a Gem :)


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#17 mushroom

 
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Posted 22 October 2012 - 03:48 PM

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!


This does not make sense either. You can do both at the same time. The genes are NOT affected by lack of gluten :blink: What is he talking about???

Edited to say: Just saw Lisa's reasoning; hadn't considered he might be persuaded to do another biopsy, in which case continue with the gluten :D
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#18 frieze

 
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Posted 22 October 2012 - 04:16 PM

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

Just so you know that gene testing is not diagnostic. You can have gene(s) and not have the disease, and not have either of the two common genes and still be celiac.
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#19 megsybeth

 
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Posted 23 October 2012 - 01:00 PM

Hi Jessica, Your story reminds me of my son and my struggle to get a clear diagnosis. Have you considered having yourself or your husband tested? That was where the process with my son led me. I recognised some symptoms and did test positive, which makes me think gluten-free will help my son, regardless of endo. Without that, his GI would probably not have looked further. Good luck! Megan
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#20 Oli's Mom

 
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Posted 28 October 2012 - 12:08 PM

He had the test on Friday. It should take about two weeks to get back. We are also going to have his dad tested as he has always had bowel issues. If all tests are negative, we will give it a rest. If anything is positive, we will pursue a Celiac diagnosis! Thanks all for your great advice!
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#21 PA Celiac Mom

 
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Posted 30 October 2012 - 05:29 PM

Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!
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#22 kareng

 
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Posted 30 October 2012 - 06:16 PM

Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!


From the Univ of Chicago Celiac center about "stool Celiac tests"

"Why donít you recognize tests (stool tests or otherwise) for gluten sensitivity that are currently available through companies like Enterolab or Cyrex?
We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support."

http://www.curecelia...erolab-or-cyrex

Why not take him to an MD and get a Celiac Blood test?
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#23 megsybeth

 
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Posted 31 October 2012 - 06:16 PM

HI PA Celiac Mom. I'd recommend reading a bit on here about appropriate testing and also googling a bit. I'm dealing with a late celiac diagnosis for myself and for my son who I believed was screened. My son was first "tested" through stool screening for fats in the stool at 18 months. I was told he didn't have celiac based on this. The main reason for testing was markedly small stature. This has gotten worse and I also followed up with another GI when I switched insurance, about a year ago. GIs are the experts in this, right? I've learned not really. She also did some stool testing.... In addition to short stature my son developed symptoms like your son's, terrible diarrhea going on three months now. We have the endoscopy tomorrow so an end is in sight.

I guess my main point is that there are a tragic number of false negatives. This is much worse than kids being missed for screening because as moms we sort of file it away. Doctor said no, check that off the list. I'm not a crazy, anti-science person, it's just I've seen firsthand how this is just not quite on the radar for doctors. Good luck!
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#24 Oli's Mom

 
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Posted 10 November 2012 - 02:29 PM

Okay. I just received his blood results. They say:


HLA Class II, Locus DQB*, Allele 1 02:01
Results: Positive for HLA-DQA*05 and HLA-DQB*02 alleles

HLA Class II, Locus DQB*, Allele 2 05:01
Patient has the HLA-DQ2 antigen, but does not have the HLA-DQB antigen

HLA_DQB Genotyping Interpretation
If less than 2 alleles are reported for a locus , the patient is likely homozygous.

I have not yet spoken with his doctor. His appointment is on Tuesday. I know he does have the Celiac gene. I am wondering based on the results if he is homozygous for it (which would make me more sure of the diagnosis).
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#25 MitziG

 
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Posted 12 November 2012 - 06:27 AM

Insist on an endoscopy and biopsy. Blood only tells so much. My son was just like yours, only anemic too, and after 2 years of being told he was "just fine" even though he was barely growing and cried every day about his stomach I demanded they scope him. As in refused to leave until they agreed to do it. I didn't even know about celiac at the time, and no tests were done for it. The point is, you KNOW something is wrong inside his guts, so MAKE them look.

What they found was one of the worst cases of celiac the dr had ever seen. And what followed was testing for the rest of us (which were positive for my daughter and I) and positive biopsies for us as well.

Doctors are useful for doing the tests. But in my experience and opinion, parents are better at getting to the bottom of things. Do NOT let them push this undeer the rug, your son needs you!
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