12 Month Old With Symptoms Long

[EmmysMommy]

I am new here, so bear with me~

My daughter Emmy has been having problems since she was 5 months old when we discovered she hadnt been gaining weight since she was 2months old, due to reflux. She was hospitalized for stopping breathing due to the reflux as well. I had to stop breastfeeding bc of a milk/soy protein allergy and she went on Elecare., only a highly concentrated dose to make her gain weight. Now fast forward, she is up 18lbs, which is great, and the reflux is being managed by Prevacid.

She has had multiple reactions to food through explosive diarrhea, or rashes, or both. Most recently though, I think she is reacting to wheat and or gluten. She just gets this foul smelling poop, sometimes its diarrhea, sometimes its not, but when she does eat wheat/gluten I smell it, and when she has a lot of it, she behaves differently. She is such a happy baby, and sometimes when she has it, she cramps over in pain, sleeps poorly etc. Just not herself.

Well she had this ongoing diarrhea, which the GI dr. brushed it off as a bug. That no one else in my house got. They did virus cultures on her stool, nada. Well, miraculously when I took her off gluten she got better and her stools were normal.

I finally got an appointment and she also brushed off my concerns saying that she is too young to have Celiac and that if I eliminate gluten from her diet she can develop it. I thought if you had it, you had it, if you didn't, then you didn't.

So now, I am limiting her gluten intake, because honestly I dont know what else to do. She has RAST testing done last week, all negative, but I'm pretty sure that was to shut me up lol. She also has funky looking teeth, they are discolored. She is never put to bed with a bottle. She also has developed this special little rash as of yesterday., on her arms and legs little red bumps.

What does everyone think?

My questions: If I want the IgA panel done, will the results even be accurate since I've been eliminating/limiting her gluten intake?

Could they just do the DNA testing? I am pretty sure I could demand it from either the GI or my pedi, she is awesome.

If she does have it, should my other DD get tested? Shes 2.5 and now that I am reading more she sorta has some of the symptoms.

The allergist asked if we are Irish, and we are(he could tell from my paleness and DD's red hair!) Does that make a difference? Are some of you Irish?

This is a lot,. and I thank anyone that can help me!

[lizard00]

Hi and Welcome! I am so sorry to hear about your little one.

Children can be diagnosed at a very young age. In fact, up until recently, and in some doctor's minds still, celiac is a pediatric disease.

It could be helpful to pursue testing for her, as she does appear to have many of the classic symptoms. However, be aware that testing in children is notoriously inaccurate, so it may come back negative anyway. And how long have you been limited her gluten intake? That can be a factor in the accuracy of the blood tests also.

If she is thriving on a gluten-free diet, other issues resolve and no new ones appear, then that should give her doctors a pretty clear picture of what is going on.

If she does have it, your whole family should be screened, since it is genetic.

[EmmysMommy]

Hi and Welcome! I am so sorry to hear about your little one.

Children can be diagnosed at a very young age. In fact, up until recently, and in some doctor's minds still, celiac is a pediatric disease.

It could be helpful to pursue testing for her, as she does appear to have many of the classic symptoms. However, be aware that testing in children is notoriously inaccurate, so it may come back negative anyway. And how long have you been limited her gluten intake? That can be a factor in the accuracy of the blood tests also.

If she is thriving on a gluten-free diet, other issues resolve and no new ones appear, then that should give her doctors a pretty clear picture of what is going on.

If she does have it, your whole family should be screened, since it is genetic.

Thanks for responding. Its been about a month now that we have been restricintg/eliminating it. Does that make a difference? We have a appt on March 19th!

[weluvgators]

Hi, Mama!

Wow! Your post sounds SO much like our family and experience! My Our DD2 was our first indicator that gluten was a HUGE issue. From the first introduction of gluten table food, we understood that it did BAD things to her. We let her try gluten stuff a handful of times during months 6-12 of her life, and while I may have reduced my own gluten intake (she is a full-term breastfeeding child), it took me until she was about 14 months to understand that I needed to eliminate gluten too. You can see the discolored line on her teeth from when I stopped consuming gluten. I wish that the pediatric dentist had recognized her gluten issues when she went in for her first cleaning and check up. If so, we may have tried to run a celiac panel on her then . . . even though she still didn't consume "normal" amounts of gluten, but it was probably the best shot we had at having a more "firm" diagnosis. Now, we suffer from some severe dental issues, and I have been told by a dentist that she has the teeth of a candy eating, soda drinking, bottle at bedtime child. It was really devastating to have a "medical professional" tell me that. She has never had a soda, she has had insignificant amounts of candy, and she hasn't nursed at bedtime in a really long time. She has extremely good brushing habits and extremely good dexterity because she understands that taking care of her teeth is important to her health (and yes, we brush her teeth too!). She has suffered a lot of pain from her back molars that are practically rotting out of her mouth. I highly recommend to start exploring the dental issues NOW and developing a relationship with a good dentist. We travel many hours to go to an understanding dentist! BUT, even he has some limitations in his understanding of our condition, as he seems to have no experience with a super silly girl.

When I felt like we were running in circles with this whole gluten and figuring out the diet thing, I resorted to Enterolab testing. That was extremely insightful for us, as even though we had been on a gluten free diet for many months, she was still testing very high on the gliadin and tTG Antibodies. She also came back with DQ2/DQ8 genetics. We later tested her sister and found that she too was still testing above normal on the antibodies, and she too had genetic answers that really helped me understand how to interpret our CC exposures a lot better.

We have had to implement extreme (IMO) and ridiculous (in others' opnions) protocols to help reduce and minimize our CC exposure. We also have a third child that is still very young, and he too reacts to ridiculously small amounts of CC gluten exposure. We have not had him tested. It is very hard for us at times to understand the advice of the celiac experts in this field, as they are quick to say that we are NOT celiac - VERY true and I hope that to forever be the case!! Perhaps we did have the gut damage at some point (moreso with our older DD that did not have obvious symptoms so had more normal gluten exposure before her sister's issues became so apparent). The experts do not seem to understand that having my DD2 consume gluten is not an option. She is just WAY too sick with any exposure to consider a gluten challenge. I wish that I could consult with an expert, but we have not had any luck with that . . . as she is not celiac LOL . . . since we have never really had a solid gluten challenge. And when you look at how important early diagnosis of celiac is (University of Chicago Celiac Center has great stats on that), it gets even more frustrating that finding help for these obviously gluten intolerant children is SO hard and convoluted.

Oh, and my super silly DD2 is fair skin with very red hair. Her older sister is fair with strawberry blonde hair (looks red next to others, but not next to her sister LOL). The little boy is fair with blond hair. And dad is a redhead in total denial of his gluten issues. Well, he is unwilling to test so far and experiences no symptoms that he will admit to. Did I mention that his parents BOTH have issues?? MIL just got the Hashimoto's diagnosis (but tested "negative" after finally running the test on a severely reduced gluten diet - yes, I told her that was NOT the way to get a proper diagnosis, but she just wanted to hear that she didn't have it LOL) I had NO idea that I had any gluten issues, but after being strictly gluten free, I am ridiculously sensitive to CC. I was placed on a thyroid watch when my ob/gyn with my first pregnancy noticed that I had an enlarged thyroid. I am now trying to find a good doctor to do some follow up, as I seem to be having some thyroid stuff going on.

Hope it helps! Keila