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18 Month Old Failure To Thrive
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Hello, I am new to this forum and hope I can get some answers! My 18 month old has been steadily not gaining weight since 10 months. She is officially off the charts. Her stools are loose all the time, at time almost beige in color, and despite eating a ton of food she just can't gain weight. We just recently tested her for allergies and celiacs blood tests. I tried a cows milk free diet with no change in stools. then, I did put her on gluten free diet for a few weeks and her poops became normal for the first time since birth! I spoke to her peds and went back on gluten for 2 weeks then did all the tests. Her poops became loose again 48 hrs after reintroducing gluten. However, her igg and iga were in the normal range, and even though her rast for wheat was slightly elevated at 0.17 it is not considered am allergy. She did test positive for class 2 cows milk allergy! So I am putting her on dairy free diet but my question is should I still a valid gluten? Can she still have celiacs? It does run in our family. Her inflammation markers were also negative. Her plt were elevated also but that can just be a reactive response to being allergic to cmp? I just don't know if I should push for a biopsy or if it is not needed at all to confirm no celiacs? Thank u. Laura

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Dairy is also broken down at the tips of the villi, this is why many docs now tell patients to cut out dairy...Goat's milk is easier to digest so down the road you may want to give that a try.....no one can say for sure if she has celiac or not.. Trial & error will give you the answer. She is still very young ... SO your options would be to start out with no dairy for three month & watch for changes & make your move from there or to just remove both dairy & gluten immediately. As a parent that is your choice...

When our grandchild was like your daughter we did the scope with biopsies age 2 1/2 years... Best thing we ever done.... now 12 & growing ... A very picky eater though as I think the remembrance of food making him ill is in the back of his mind....

I think the real problem happens when school age begins because without proper documentation the school may not be willing to assist with the gluten-free diet...

And there are people who have celiac who show no intestinal damage...

My heart goes out to you as we have been there & as a parent/grandparent we never want our kids to be nothing but healthy....

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Laura.......blood testing in children that young is notoriously unreliable partly because it can take years for antibodies to build up to the point where it shows in blood work.  An 18 month old is still too new on the planet for a definitive diagnosis.  :)   It can happen but many parents of young children struggle to get a proper diagnosis.  Here is what stands out for me......Celiac runs in your family, you did a quickie dietary trial and noticed big improvements in her bowel habits and then re-introduced gluten with a return of symptoms. She has stopped growing.  I would make sure they did a FULL Celiac Panel on her, not just a couple of tests from the panel and you might want to consider a biopsy, even though I would have trouble with letting a doctor scope a child that young....but that's just me.  However, at her young age, a biopsy might very well be negative at this point in time but you never know.

 

Let me tell you this......my great nephew, who is about 9 years old, is very small in stature and weight.  He has behavorial issues and developmental issues....not bad, but they are there.  His brother, who is 4 years younger, is the same size.  I have been telling my niece that this poor kid has Celiac from about Day 1 but she is in denial and her dopey GI keeps telling her he doesn't...because the scope did not show blunted villi yet.  But his duodenum was inflammed.....why would his duodenum be inflammed in a child so young?  So...he is still on a gluten diet and now has developed full blown asthma and is taking other meds for severe constipation.  This is driving me batty and I want to shake my niece by her toes because she is slowly killing her child because of an arrogant GI doctor who doesn't know his ass from his elbow.  Please do not let this happen to your daughter.  Repeat the blood work, doing all of the testing in the panel and consider a scope. If everything is still negative, put her on a strict gluten-free diet and don't look back. Otherwise, your daughter will never grow and she could start to develop any one of the many autoimmune problems that come with undiagnosed celiac. (Like asthma) Sometimes the medical community fails us miserably and you have to go your own road for the sake of a healthy kid.

 

Oh yeah.......I would also suggest gene testing to see if she carries one of the main celiac genes. That could help bolster a diagnosis.

 

Good luck!  :D

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Personally I would retest blood. That's what we did. And it all started with a 12 month old FTT that ended up with DX at 18 months.

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Testing is not perfect, particularly with a young child. While a medical diagnosis is preferred, if your baby is obviously healthier on a gluten free diet.. make her gluten free (dairy and gluten problems often go hand in hand), it's only food. I suggest keeping a journal and note her reaction to foods, stool appearance & weight gain... I more than suspect you will see it! Then in a year, review her progress and your notes with your doctor and or peds gastroenterologist. Get her healthy momma, your instincts are right on & then discuss if it's worth getting an official medical diagnosis with the professionals. It isn't going to hurt her to live without gluten and dairy if you make sure she is getting nutrients from good sources, it sounds like it is going to help her!

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My 18 month old had similar symptoms; beige and VERY acidic diarrhea. Sudden onset such that we thought it was a stomach virus, but it just never went away. Husband is celiac so we eliminated gluten and she started having normal stools again. We also did the blood test (altho not the complete panel) and it came back negative. With family history and response to diet, we went gluten-free and never looked back. There are good reasons to do the endo, though. Just wasn't for us. Maybe we'll let her decide to do that when she's older. If she can tolerate eating a gluten diet for that long, that is.

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Lactose intolerance is ALWAYS the first sign of celiac disease imho. It shows up long before the tests will, it's an early sign, be happy for the early signs. I don't even believe you can have one without the other and if anyone tells me you can I wouldn't believe it :).

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    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
    • Hi Beachgrl, We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless. There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet. Welcome to the forum!
    • I have microscopic colitis. Having a bad flare of D.  On Budesonide for first time for this. It's helping some- only on it a week. Do you think gluten free would help even if tested negative a few years ago?  Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before. Thank you!!
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    • Hi. Im currently under consultants at my hospital,  and have just been for a blood test to test for celiacs. My symptoms are.... Low weight (8stone and 5ft6tall) Joint pain,particularly my hips and lower back  Severe pain in my gall bladder area which happens spontaneously... Especially after eating foods containing gluten.  When i have foods with wheat in i pain in my  right side just under my bottom rib, i become a bit spaced out and cant focus on anything. Also get diahorrea aswell. I recently contracted C-Diff and was in hospital for 4 days very poorly. Im 29years old (female) and the doctors r trying to work out what is wrong with me. I have always struggled to gain weight,  even after having 2 children i am still only 8stone. I was just wondering if u think i could have celiacs?  The pain in my side has been on and off for 7years! And the last 3years its been severe. And it definitely comes on as soon as i have gluten/wheat.   
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