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Chris0107

I Am New. Concerned Mom With Pics.

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Hello everyone

I have not yet seen a doctor about his because I really thought she was fine. Then after looking online I realize there can be a problem. I do plan to see a doctor but in the mean time I am hoping to get some opinions. My daughter is 18 months old. She only weighs 20.8 pounds and I believe that puts her in the 5 percentile. So she is pretty small. She does not eat all that great. She is still on a bottle which she has about 2 or 3 times a day. I fill it with either milk or toddler formula. Then throughout the day she really only snacks and will take a few bites of something here and there. She does drink some juice as well. She does poop everyday and they are normal I think for the most part. The startling thing is despite her tiny frame she has a pretty large stomach. And no its not soft, its hard. She has vomited sometimes out of the blue but its not very often, just on occasion. She seems otherwise normal besides these things. I do not have any celiac in the family that I am aware of. Can you please tell me what you think? Could this all be considered normal still, or should I be concerned? Does this look like a celiac belly? Here I will include the pics. Any opinions are welcome. Thanks.

http://i3.photobucket.com/albums/y78/Sweet.../newpics006.jpg

http://i3.photobucket.com/albums/y78/Sweet.../newpics014.jpg

http://i3.photobucket.com/albums/y78/Sweet.../newpics018.jpg

http://i3.photobucket.com/albums/y78/Sweet.../newpics035.jpg

http://i3.photobucket.com/albums/y78/Sweet.../newpics040.jpg

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I would get her tested. My daughter's body was just like that. Another body feature is to have a very small, flat butt.

How are her sleeping habits?

Good luck with the testing. It is known fact ~ the testing is not very accurate in patients under 24 months. Hopefully that will change soon. She needs to stay on gluten during the testing. Testing will include the blood panel, an endoscopy with biopsy, possibly the genetic test, and the response on the gluten free diet. If the testing is inconclusive ~ definately try the gluten free diet.

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I can't say about the belly, but dies she fall in the"failure to thrive" category. If so, that's a major celiac red flag at this age.

richard

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My daughter at 22 months just stopped eating and drinking all together. She had never been the best eater and was in the 5th percentile but had always been on the small side. She had no symptoms of celiac's disease at all abut she did have a severe ear infection at the time. She ended up going down to 17 lbs and ended up with a feeding tube to keep her going and in two hospitals and ended up with a endopscopy and biopcies which said she has celiac disease. No one in either of our familes has it and my husband and I were both tested and neither of us have it. So it is a hard thing to know for sure without the biopcie.

Good luck and I hope things are ok with your daughter.

Bonnie

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Milk allergies run in my family with addition to the wheat intolerance and from what you've said I'd be suspicious of the milk. Has she ever had ear infections? Melt downs? Trouble hearing?

I'd suggest switching the milk with a fortified rice milk while you're pursuing the gluten testing. Both my sister and daughter have extreme milk intolerances and self limited their diets to mostly milk products which is typical of an allergy.

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My son would vomit every once in awhile too and had the bloated belly and skinny arms. He was diagnosed when he was 3. So it's definitely worth testing--and even if it's negative, she might want to get tested later if there are no other answers. Or you could try gluten free after the test regardless.

Other symptoms he had were fatigue and irregular BMs: constipation or little bits of bowel all day. but the fatigue and vomiting didn't show up until he was three. I don't know how long he officially had celiac.

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I can honestly say that doesn't look that much different from my (assumed) healthy kids. Now, there is a chance that they have it, as I am self-diagnosed after years of my doctors farting around and calling me crazy. Gluten free has made me feel a whole ton better, so it is possible that my kids have a gluten issue as well.

However, my kids hovered in the slim end of "normal" and no vomiting on this end. For the most part, they are all healthy. (to my knowledge)

I am not a fan of invasive tests for kids, so I plan on just trying the diet on them when I finally get myself straightened out and see if there is a noticeable difference.

There are pros and cons to doing the tests now - there are always risks with anesthesia and invasive procedures, but you may find it better to do it now when she has little to no memory of gluten and the diet is of no issue. Schools may require a formal diagnosis for concessions, as well.

If it were ME, I would have the blood tests done and then probably decide based on the results. If the blood tests are heavily leaning towards it, then I would probably make the diet modification and see what happens. Blood tests + conclusive dietary results would be good enough for ME for a diagnosis. When she was older, especially if she were continuing to fail to thrive, I'd have a biopsy done to make sure that it truly was gluten free.

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Hi, your daughter is so cute! Thanks for posting the pictures. I have a couple of questions based on what I see that may seem random....

Have you ever cut her hair?

Were/are her teeth slow to grow in?

Does she have dark circles under her eyes?

In one picture it looks like she might have circles... If so, this turned out to be a major issue with my now 7 yr old with a dairy allergy (she's also seriously allergic to dust). She also can't eat gluten now but that came about later due to her skin issues.... so on that note, does she have eczema trouble? In addition to any gluten issues you may notice, I would also consider allergies or other food intolerances.

My seriously gluten intolerant dd (now 6 yrs) was small like your dd. Her hair did (and still does not) grow fast. Her teeth were slow to grow in and slow to fall out. We didn't have the large belly issue (at least I did not notice it as unusual at the time) but had a bunch of other issues.

Are there other random symptoms that you notice that you might share?

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I would get her tested. My daughter's body was just like that. Another body feature is to have a very small, flat butt.

How are her sleeping habits?

Good luck with the testing. It is known fact ~ the testing is not very accurate in patients under 24 months. Hopefully that will change soon. She needs to stay on gluten during the testing. Testing will include the blood panel, an endoscopy with biopsy, possibly the genetic test, and the response on the gluten free diet. If the testing is inconclusive ~ definately try the gluten free diet.

Hi thanks for responding. Her sleeping habits I think are normal. She sleeps through the night, and takes one nap usually around noon for a couple hours. She doesn't have the flat butt that I can see as of yet.

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Hi, your daughter is so cute! Thanks for posting the pictures. I have a couple of questions based on what I see that may seem random....

Have you ever cut her hair?

Were/are her teeth slow to grow in?

Does she have dark circles under her eyes?

In one picture it looks like she might have circles... If so, this turned out to be a major issue with my now 7 yr old with a dairy allergy (she's also seriously allergic to dust). She also can't eat gluten now but that came about later due to her skin issues.... so on that note, does she have eczema trouble? In addition to any gluten issues you may notice, I would also consider allergies or other food intolerances.

My seriously gluten intolerant dd (now 6 yrs) was small like your dd. Her hair did (and still does not) grow fast. Her teeth were slow to grow in and slow to fall out. We didn't have the large belly issue (at least I did not notice it as unusual at the time) but had a bunch of other issues.

Are there other random symptoms that you notice that you might share?

Hi and thanks for replying. I actually have not really ever cut her hair except her bangs a little here and there. I think her teeth came in at a normal pace. I don't think she really has the dark circles. I just checked I didn't see them now. She doesn't have skin issues that I can tell. Though as you can see in the pic her cheeks do get rosey sometimes. Not sure if that means anything. The main thing really is her small weight and big belly, and eating habits. I am so thankful for everyones input and anymore you have to share or ask please do.

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I can honestly say that doesn't look that much different from my (assumed) healthy kids. Now, there is a chance that they have it, as I am self-diagnosed after years of my doctors farting around and calling me crazy. Gluten free has made me feel a whole ton better, so it is possible that my kids have a gluten issue as well.

However, my kids hovered in the slim end of "normal" and no vomiting on this end. For the most part, they are all healthy. (to my knowledge)

I am not a fan of invasive tests for kids, so I plan on just trying the diet on them when I finally get myself straightened out and see if there is a noticeable difference.

There are pros and cons to doing the tests now - there are always risks with anesthesia and invasive procedures, but you may find it better to do it now when she has little to no memory of gluten and the diet is of no issue. Schools may require a formal diagnosis for concessions, as well.

If it were ME, I would have the blood tests done and then probably decide based on the results. If the blood tests are heavily leaning towards it, then I would probably make the diet modification and see what happens. Blood tests + conclusive dietary results would be good enough for ME for a diagnosis. When she was older, especially if she were continuing to fail to thrive, I'd have a biopsy done to make sure that it truly was gluten free.

Thanks for your input. What would require anesthesia? Forgive my ignorance.

Are your kids still on the smaller side? I have a 7 year old son and he was always normal sized, if not chunky as a baby/toddler.

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Milk allergies run in my family with addition to the wheat intolerance and from what you've said I'd be suspicious of the milk. Has she ever had ear infections? Melt downs? Trouble hearing?

I'd suggest switching the milk with a fortified rice milk while you're pursuing the gluten testing. Both my sister and daughter have extreme milk intolerances and self limited their diets to mostly milk products which is typical of an allergy.

Hi. She actually has not had any ear infections thank God. I did breastfeed til she was 8 months. No trouble hearing that I know of. Melt downs? hmmm well, lol ya but she's a little diva sometimes so hard to say what that means.

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My son would vomit every once in awhile too and had the bloated belly and skinny arms. He was diagnosed when he was 3. So it's definitely worth testing--and even if it's negative, she might want to get tested later if there are no other answers. Or you could try gluten free after the test regardless.

Other symptoms he had were fatigue and irregular BMs: constipation or little bits of bowel all day. but the fatigue and vomiting didn't show up until he was three. I don't know how long he officially had celiac.

She does sometimes have the little bits of bowels but then other days she doesn't. Thanks for the input.

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Huh, the vomiting has peaked my interest...my son has always been underweight...5th-10th percentile (and freaked WIC out for years but they never figured out what was 'wrong' with him, although I think they liked making me miss work for appointments and making me cry a lot because of course it's because I'm a bad mother and give him too much or not enough milk and/or juice, right? Yes they actually said both in consecutive visits!) but he's tall for his age, so I don't suspect a growth problem. However, he often gets a distended belly (not hard, I don't think,) has random problems with D, and he does occasionally vomit when he isn't sick. He's always thirsty and has always drunk a TON of fluids. He only gets C a few times a year, but his BM's are irregular and unpredictable. Last time he vomited, it was right after he went to bed, and he slept in it all night...didn't wake us up to clean him or anything. I stayed home with him thinking he had the flu, but he was totally fine. And then I forgot about it, until now...he's done things like this before. I know he can get hyper after eating gluten...he eats my gluten-free cookies and he's fine, then eats a wheat cookie and he's bouncing off the walls. Maybe I should get him tested just to be safe...hmmmmm.... Am I being an over-anxious mother? Do kids just puke for no reason? I don't want to be that mother that projects their issues on their kids...he could be totally normal. He's not even close to as sick as my niece was, so I don't want to jump the gun and overreact.

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Pink cheeks and/or ears are a sign that a child has recently eaten something they are sensitive too. I highly recommend "Is this Your Child" by Doris Rapp. It answered a lot of questions for us about food sensitivities that no one else could.

caek_is_a_lie it sounds like your son is sensitive to gluten. Foods are chemicals to our bodies and when we consume chemicals we can't digest they do harm.

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Thanks for your input. What would require anesthesia? Forgive my ignorance.

Are your kids still on the smaller side? I have a 7 year old son and he was always normal sized, if not chunky as a baby/toddler.

The endoscope to have the final diagnosis is what requires anesthesia.

My kids are all short, some are light, some are average weight. I have 4.

I see possible symptoms in all of them, but right now I'm seeing gluten intolerance in everyone! :LOL

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My older son had that "protruberent belly" (as his allergist called it), just like your daughter (she's a cutie, BTW!). He was diagnosed through Enterolabs at 3, and at the age of 5 now has a little washboard belly. My youngest does, too (he's 2.5 and has never had glutens).

I'd get her checked out, or do a gluten-free diet trial.

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My 30 month old daughter was recently diagnosed. She had the same belly and vomitting. She mostly drank milk and ate very little. There were periods when she was an infant that she did not gain weight at all. We removed dairy as well when she went gluten free. Please be careful of the rice milk suggestion. We started with Rice Dream Chocolate Rice Milk which she promptly vomitted. Not all rice milk is gluten free. I found out later that Rice Dream uses barley in the processing. My daughter will vomit within 8 hours if she ingests even minute amounts of gluten. Pediasure is gluten and lactose free as far as I know. However, I found that my daughters appetite increased dramatically within about 2 weeks of being gluten free. Her stomach is now flat!

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My 30 month old daughter was recently diagnosed. She had the same belly and vomitting. She mostly drank milk and ate very little. There were periods when she was an infant that she did not gain weight at all. We removed dairy as well when she went gluten free. Please be careful of the rice milk suggestion. We started with Rice Dream Chocolate Rice Milk which she promptly vomitted. Not all rice milk is gluten free. I found out later that Rice Dream uses barley in the processing. My daughter will vomit within 8 hours if she ingests even minute amounts of gluten. Pediasure is gluten and lactose free as far as I know. However, I found that my daughters appetite increased dramatically within about 2 weeks of being gluten free. Her stomach is now flat!

Is that true about Rice Dream? I wonder if that is part of my problem... I've been trying gluten free for about 2 weeks now and have reactions to foods I thought I should have reactions to - I though maybe I had an "additional" food issue, but I know the vanilla Rice Dream was one of my problem foods....

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Is that true about Rice Dream? I wonder if that is part of my problem... I've been trying gluten free for about 2 weeks now and have reactions to foods I thought I should have reactions to - I though maybe I had an "additional" food issue, but I know the vanilla Rice Dream was one of my problem foods....

I read about the Rice Dream in Danna Korn's "Kid's with Celiac Disease" book.

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Thanks everyone. I wanted to update. When I took her in Friday she actually only weighed 19.2 pounds! They said she weighed more back in December and that she was not even on the percentile charts anymore. They gave her a catheter right then and she was screaming bloody murder, it was terrible. I also did find out that her great grandpa had celiac, so I was wrong when I said I didn't think anyone in her family had it. She is getting blood work tomorrow and they are supposed to test for celiac and other things it could be. I will update when I get results. I am pretty worried about her at this point. Her eating lately has been terrible I am lucky if I get 4 or 5 bites out of her. She still drinks her milk fine.

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Hi! I know your concern and am in a similiar boat. My son is almost 20 months old and weighs 19.8 pounds. Recently he had a blood test for celiac that came back positive. We are currently waiting for the biopsy and have a "consultation" on tuesday. It is having to drive me crazy waiting to know for sure!!!! I am sure that you are in the same boat. But he has the exact same symptoms as your daughter except the random vomiting. Hopefully, you will know soon. keep us updated!

oh, one thing that has helped my son grow and gain a little weight is pedisure with heavy whipping cream in it. My son drinks a lot of it!

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Hi, my dd was diagnosed last december at 2y9m

this is what her tummy would look like

http://www.flickr.com/photos/brazen20au/1648913289/

we didn't take her to the dr for another 4 months after that photo was taken and it was because she had a week of doing white poos.

now she's diagnosed we can see all the signs and symptoms looking back but at the time it was too easy to find reasons for them all:

* stunted growth, especially compared to her very tall brother & sister - our mothers & sisters are on the shorter side

* that tummy - people said it was normal toddler tummy

* vomits - they only happened occasionally and we thought maybe she'd eaten too much as it would just be once or twice and generally mucus filled

* very pale, especially compared to her sister - my sister has very pale skin (FWIW my sister is a suspected coeliac too)

* very sloppy, runny and frequent poos - same as her brother had had when young (he is now complaining about tummy pain and i am considering further testing on him too)

between blood tests and the biopsy she started complaining of stomach pain and was subconsciously avoiding gluten products.

at the very least i would have the blood tests done, and if they show negative, have the gene test done (if she doesn't have the gene you know it can't possibly be coeliac)

good luck.

PS: after 4 months on the GFD - which she LOVES - she has grown over 2cm (1") and put on over 2kg (1 lb) !!!!

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My daughter at 22 months just stopped eating and drinking all together. She had never been the best eater and was in the 5th percentile but had always been on the small side. She had no symptoms of celiac's disease at all abut she did have a severe ear infection at the time. She ended up going down to 17 lbs and ended up with a feeding tube to keep her going and in two hospitals and ended up with a endopscopy and biopcies which said she has celiac disease. No one in either of our familes has it and my husband and I were both tested and neither of us have it. So it is a hard thing to know for sure without the biopcie.

Good luck and I hope things are ok with your daughter.

Bonnie

Hello! I read yours and I noticed that you said you and your husband were both tested and neither of you have it. I did TONS of research when they thought it was the possible diagnosis to my daughter and continued for the last 6 months. I was told though that it's completely genetic and has to run down the line for you to actually have the disease. My husband and I debated on who had it and we pinned it to him cause he had all the obvious signs of the disease. Well, it came back to me and me having the genetic. Were you tested for the disease and the genetic or just the disease? I'm just curious on if they had done it though. Thanks!

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Thanks everyone. I wanted to update. When I took her in Friday she actually only weighed 19.2 pounds! They said she weighed more back in December and that she was not even on the percentile charts anymore. They gave her a catheter right then and she was screaming bloody murder, it was terrible. I also did find out that her great grandpa had celiac, so I was wrong when I said I didn't think anyone in her family had it. She is getting blood work tomorrow and they are supposed to test for celiac and other things it could be. I will update when I get results. I am pretty worried about her at this point. Her eating lately has been terrible I am lucky if I get 4 or 5 bites out of her. She still drinks her milk fine.

Hang in there....it is going to get better!!

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    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.
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    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
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    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.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    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

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.