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MissyBB

Classic Celiac In Kids???

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Hi there. I am a member here as I am, at the very least, NCGS. I have never been tested to confirm celiac because I went off gluten during a food challenge and alllll my symptoms disappeared. I never went back to gluten. That was three years ago.

Okay, so my daughter.........she is 12 (13 in July). About a month ago she started feeling unwell. Belly pain, nausea (though NEVER has thrown up) and generally unwell. At first I chalked it up to whatever was going around her in the Canadian winter months of sickness that makes its rounds. But after about ten days of her feeling this way I took her to the ER. They examined her, did an abdominal x-ray and found she was full of stool. VERY constipated. We were sent home with directions to use Restoralax and get her cleaned out.

That was March 24th. She is STILL feeling this way and Lord knows she is "cleaned out" now and no longer constipated.

I wanted to ask parents here, on this part of the forum as you have experience with kids with celiac or NCGS. And my symptoms were not the same as hers. I had loose stools, and the arthritic pain.

So, some facts:

-she is 12

-always been healthy and on ZERO medication

-has intermittent nausea and stomach pain

-has this issue most days (she went two days, not in order, here and there that she felt good since mid-March)

-she IS underweight and height for her age but I was also a smaller person when I was young. My son was also smaller and sprouted up around 14 yrs old

-she weighs 83 pounds and is 5 foot 2 inches tall (will be 13 in July)

-has not started menstruating

-never has fever and is otherwise "fine"

 

I ordered a home celiac blood test and it is coming in the mail. I do NOT want to take her off of gluten before the test.  And, yes, I know some of you are going to say go to the doctor and get her tested but in Ontario we have to PAY for the test anyway so I might as well get the test in the mail. It will be quicker than getting an appointment, getting blood work, and then getting it back. And that is taking into account that any physician will take me seriously in the first place.

Does anyone have any thoughts on this?? Advice?

 

 

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I think that you are doing everything right given your circumstances.  If the biocard (not sure what test is on it)  is negative, you might consider the full celiac panel.  She could be just in the process of developing celiac disease.  Who knows?  It's a tough call.  She is really underweight for her height per the BMI chart.  I, too, come from a family of little people and small children, but most catch up in elementary school.  

Constipation?  You can still be going daily and still be constipated. 

My daughter was last tested two years ago.  She's been getting some weird symptoms, so I took her in for a well-check last week.  We are waiting for thyroid and CBC results.  I did not ask for celiac testing again as she seems pretty healthy, but that is still under consideration (I would need to beef up her gluten consumption for a few months as she's pretty gluten light).    I presented with anemia, so I am waiting to see her CBC results.  She's also a freshman in high school with a challenging schedule (honors,  band and sports).    She definitely needs the entire panel as I test negative on the TTGs for some unknown reason.  

Good luck and keep us posted.  I sincerely hope she does NOT have celiac disease.  

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Cycling Lady.....thanks for your input.

 

Yes, it is the Biocard. If it comes back negative, which, of course, I hope it does, then we will have to investigate further. She obviously can NOT be feeling like this indefinitely. I feel so terrible for her.

If the test comes back negative and we take her back to the ER and they see nothing then I will start an elimination diet - wheat first.

I'm worried because I HIGHLY suspect my mother has celiac. She has had 'IBS' for years and years and has always had diarrhea and other problems. Once I figured out wheat was my problem I had an "aha" moment about my mom's suffering. We're not close and, well, she's the sort that would rather live in denial, hugging her loaf of bread, than to let it go and be healthy.

Point is, first my mom, then me and now my daughter with these problems. It concerns me.

 

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Good luck OP. I hope you find the answers. For me getting positive coeliac screen back was great because we were running out of ideas for what was wrong with my son. We are now waiting on endoscopy.  Like your daughter my son is 12 (13 in December) and same height but weighs 68lb. He has lost 11 pound since November. He had severe reflux as a baby, never well controlled. He continued with intermittent reflux through the next 10 years and developed severe abdominal pain daily about a year ago. He has always vomitted easily, but the last 2 years that averages 10-20 times a week. He has bags under his eyes and looks so unwell.  He faints frequently and is anaemic with extremely low B12. 

 

Quite frankly I cannot wait to get him onto a gluten free diet to see him get well again.  Hugs to you and your daughter, I hope the test brings answers. 

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UPDATE........

 

I took my DD back to the ER today as she has the terrible stomach thing again. The did full blood panel PLUS a full celiac panel. The good news is that she's not dying of some dreadful thing. Liver, pancreas, kidney stuff all came back fine. 

We have to see the family doctor for the celiac panel and the H Pylori test as it takes a few days.

I was SHOCKED the ER doc came up with the celiac panel all on his own! And, because the ER ordered it we don't have to pat the $400 for it! 

Since the test is done I am starting her on a gluten elimination right now. We'll see if she starts feeling better.

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Oopps.... the test is more like $200 . I tried to edit my typo but for some reason it won't change. Anyway.......

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I wound't pull gluten till you get the results from the Dr. A biopsy while consuming gluten is what is considered the "gold standard" for dx. 

 

Good luck!

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Good point. Thanks!

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No, not yet. Our GP is hoping they come in tomorrow (Thursday). It's been a very long wait! I am hoping it's H Pylori and NOT celiac. Fingers crossed.

She's still suffering with a lot of nausea and pain.

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UPDATE

We got the results back. Both the celiac panel and the H Pylori were negative. Ugh.....now we have absolutely no idea what to do. We have to start from square one again.

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Thanks for the update.  While I am glad that she doesn't have celiac disease or H. Pylori, I am sad that she is still in diagnostic limbo land.  I hope you can figure it out!  

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19 hours ago, MissyBB said:

We got the results back. Both the celiac panel and the H Pylori were negative. Ugh.....now we have absolutely no idea what to do. We have to start from square one again.

Before eliminating gluten, can you do the array 3? From what I have read, this can diagnose Non-Celiac Gluten Intolerance. Would be good to know for sure what you are dealing with. (As much as it is just plain awful to see our children suffer). I'm in the same boat here. Waiting for blood test results for both my boys.

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On 22/04/2016 at 8:45 AM, ChiaChick said:

Before eliminating gluten, can you do the array 3? From what I have read, this can diagnose Non-Celiac Gluten Intolerance. Would be good to know for sure what you are dealing with. (As much as it is just plain awful to see our children suffer). I'm in the same boat here. Waiting for blood test results for both my boys.

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

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3 hours ago, MissyBB said:

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

Well, maybe not a legitamite one!  To my knowledge (I am not a doctor, but have done lots of research), there still is no test for NCGI.  Basically, celiac disease is ruled out.  The gluten-free diet is tried and if helpful, the NCGI is given.   I wish there were testing, but science is not there yet.  

 Why spend the money?  At this point, try the diet.  

Leading celiac experts do not support Cyrex testing.  This is an old subject debated on the forum:

 

 

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11 hours ago, MissyBB said:

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

I see that I have not been very clear in what I wrote... (I will blame that on my brain fog...) My understanding is as follows: The array 3 is a comprehensive test for Celiac. Sometimes not all the tests are ordered by doctors, and Celiac can be missed in some cases. The array 3 is said to be more comprehensive. What I meant to say is that if you know you have intolerance to gluten, then this test can point more definitively to NCGI by more comprehensibly ruling out Celiac, than only having lesser testing for Celiac. I did not mean to say that it can diagnose NCGI. I am not aware of a test that can do this. I am more concerned that perhaps not enough investigation has been done to rule out Celiac for your daughter.

@cyclinglady, thank you for setting me straight. I am learning as much as I can, as quickly as I can. :)

I hope your daughter is on her way to better health very soon MissyBB.

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Ah, thanks, Ladies, regarding the NCGI testing. That makes more sense now!

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My son is 7. He's a small kid. He will be eight and is trying to hit the 4' mark and 50lbs. When he was six almost every day he complained to but his stomach. Every now and then he'd throw up but usually due to constipation. X-ray done showed he was super constipated and they wanted us to keep him in Miralax. W had him skin and blood tested for allergies, but all negative. We had him celiac tested (I have celiac) and again negative (I've since learned they didn't do the full panel so who knows). I wasn't keeping a six year old on Miralax so I took him off gluten. Within a week the stomach aches stopped. Within two weeks his mood was cheerier. He no longer has little bumps on the backs of his arms that we were told were excema from the time he was tiny. For me regardless of what condition he has we know he can't have gluten and that is a good enough diagnosis for me. 

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Missy, post the labs that were done, if yo don't mind, so we can see if were, in fact, complete.

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
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    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
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    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
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    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Thanks for the kind thoughts. The test results I got back a few comments ago and I said what they were which was negative on everything. I just don't think it's celiac but something that created this domino affect. I plan on going to my regular doctor because honestly I feel the GI one was useless. When I told her back in Feb that I wasn't sure I'd be able to have the colostomy and endo she said "well then we won't be able to help you". 😕 The peanut butter I bought was organic . I had looked at the Aldi brand which I never had any issues with and it had soy so that's why I looked for a brand that didn't have any soy. I haven't had chocolate since February either due to the soy. I hadn't eaten anything but fresh fruit, vegetables, Chicken or fish since mid Feb. I did have some dried fruit which I seemed ok with but now the last two days I've gotten gas from that :(. I did have prunes awhile back and they also gave me gas which never happened before. I rarely eat prunes as it as always done the opposite of what it commonly is used for .
    • Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.   The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  
    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
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