6 replies to this topic

[Mamaof2]

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

[mamaw]

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....

[Gemini]

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! 

[africanqueen99]

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.

[tommysmommy]

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!

[sunburst]

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.

[foam]

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 .