? Newborn Celiac Disease

[mommy2jandm]

I recently had a second child ds. I have a variety of chronic immune system problems (iga deficiency, severe idiopathic chronic uticaria and angioedema, hypothyroidism). My poor ds was distraught from 2 weeks with constant severe gas, continuous leaking of airated discolored and stinky stools, bum rash (like a blistered sunburn around his anus) that would respond to nothing, constant crying, would scream to eat (exclusively bf) then pull of an cry, and only sleep when hungry and exhausted from crying, never opened his eyes, had his legs pulled into his belly... I went from doc to doc, pediatrician after pediatrician and everyone said no it can't be an allergy you are breastfeeding! They said colic... I got so distraught when he was 6 weeks old that I stopped eating all together. With in a day or so he stretched out his legs opened up his eyes and smiled... To this day (3 months old) he still daily gets this look in his eyes with a tear as if to say thanks Momma

Turns out through elimination that he has a reaction to gluten (I can't have a drop), dairy, and maybe soy?

Anyone have a similar story? Did your child outgrow this? Does it sounds more like an intolerance/celiac or allergy?

Oh yah, I have a great ped now who said I was bang on from the beginning with my theory that my milk was poisoning him and that he had allergic collitis symptoms. No one else would listen because my darling son was gaining 2 lbs per week +, because he constantly cried, and so I constantly fed him!

I have nightmares every few nights that I accidently eat gluten or dairy and put him back into misery

Please tell me your stories or suggest anything I can do, get tested? DS has been refered to a pediatric immuno/allergist in 2 weeks? I think they are super worried because of my frightening immune system. I am happy to only drink water and stand on my head while exclusively breastfeeding if that is what makes my ds happy! Thanks for reading...

[cassP]

i read an article a few weeks ago that said Gluten could be found in human breast milk. (plus everyone knows if your child has colic, you should avoid garlic and stuff, cause it passes thru the milk)..... so, of course i believe your son is reacting to foods you're eating that are getting into your milk... and not YOUR breast milk itself. breastfeeding is one of the best things you can do for your child.

im gonna leave your testing question to more educated members & moderators on here... i dont know what to recommend as far as consuming gluten when your baby is reacting so strongly to it. ??? i hope someone answers that for you, so that your son can have accurate test results..

[tarnalberry]

If you eliminated both gluten and dairy, you can't really be certain. Dairy in the mother's diet is one of the primary dietary triggers of "colic" (specifically of reflux, which includes silent reflux which requires no spitting up), and generally bothers a lot of babies.

But, really, though it's a restrictive diet, I wouldn't change anything now, just keep in mind that you may want to find out which your child reacts to when he's older and can communicate with you. (I have a five month old with reflux, and though I was already dairy free, I also eliminated cruciferous vegetables (broccoli, cabbage, etc.) and tomatoes. I don't know if she's bothered by these - I tested out the chocolate and tea theory - but it's not worth it to me to add them back in to find out by way of a very unhappy five month old!)

[mommy2jandm]

If you eliminated both gluten and dairy, you can't really be certain. Dairy in the mother's diet is one of the primary dietary triggers of "colic" (specifically of reflux, which includes silent reflux which requires no spitting up), and generally bothers a lot of babies.

But, really, though it's a restrictive diet, I wouldn't change anything now, just keep in mind that you may want to find out which your child reacts to when he's older and can communicate with you. (I have a five month old with reflux, and though I was already dairy free, I also eliminated cruciferous vegetables (broccoli, cabbage, etc.) and tomatoes. I don't know if she's bothered by these - I tested out the chocolate and tea theory - but it's not worth it to me to add them back in to find out by way of a very unhappy five month old!)

[mommy2jandm]

I have been trying to figure out how to log back onto this site To update my status. So my DS is doing great, as long as I stay away from gluten, dairy, and soy he is so happy. We are seeing an allergist and pediatrician. They sent him for blood work (CBC and genetic test) they said they couldn't check Antibody levels as he is not getting gluten, he also had a sample of poop sent to check from WBC or RBC. That was find and the CBC was fine, just awaiting the genetic test... However, my two year old DD is another story, wonderful sweet LITTLE girl... She started off in 9oth percentile 9 lbs at birth now weighs about 24 or 25. As soon as she started on solids she slowed down in weight gain and has never had "normal BMs). Always explosive throughout the diaper and make her little bum red at times They are also very grainy/or/seedy/sandy. It is hard to explain, but like I can't wipe it off, I have to give her a tub and it is like gritty

Occassionally she has a normal formed poop (maybe once a week) and has started complaining of stomach pains, and is having sleep disturbances, and really looks tired all the time... Please let me know your thoughts, I had her antibodies (IGA) levels checked and my doc said they where ok, but I am IGA deficient... Would this affect her? Thanks for reading this... And thanks to everyone who posts... I read them everyday and feel better knowing that I am not crazy and that this is a real problem for others to... Thanks to you all!

[mushroom]

I feel so sorry for the moms who are raising infants with GI problems. Motherhood is supposed to be such a happy state, and we have all these moms worried sick about their babes and no doctor able to do anything to help them. It sounds like you are breastfeeding your son and he is doing just fine so long as you avoid the things he is intolerant to.

For your wee girl, I would definitely say that she is gluten intolerant. So many parents report "sandy" poops, and explosive diarrhea combined with lack of weight gain on solids, stomach pains and poor sleep, certainly sounds like gluten intolerance. Did they check whether she was IGA deficient, or is that what you meant when her doc said her IGA was okay?? Did he do any other tests for celiac, like ttg, endomysial antibodies (EMA) or deamidated gliadin peptide (DGP)?? It sounds like she needs the full panel run. Can you copy our her test results and the ranges the lab uses so we can see what was done? If you don't have the results, you should get them from the doctor, because ou are going to need them to take to any other doctors she sees. This definitely needs following up on.

[buffettbride]

My story isn't quite as drastic as yours, but my daughter who now has Celiac had many similar symptoms as an infant. I never really thought it could be a link to Celiac until she was diagnosed (she's 13 now), but she had horrible, wicked diaper rash as an infant. The blistering horrible kind you mention. Plus, she was a non-sleeper and didn't really respond to the anti-gas/colic stuff. I was a gluten-eater and I did breastfeed for the first nine weeks before she switched to formula. I can't honestly remember if she did better when she was just on formula before other foods were introduced, but I do know that the problems on her tushy persisted even after potty training (at 18 months) while she was eating gluten.

Her Celiac symptoms were basically all the secondary symptoms, with none of the super-skinniness and wasting that you see sometimes. She does have a flat butt, did have the Celiac belly (flattened now she is on the diet), skin rashes, bowel trouble, ridiculously long eyelashes, dark circles under eyes, etc.

I'm not sure how you'd go about getting an infant tested because testing so young can be unreliable, but I would be suspect that gluten is problematic. I wish you the best in your journey--I wish I had known then what I know now about Celiac and gluten intolerance (my DD wasn't diagnosed until age 9).

[laura4669]

I am glad to hear that your son is doing better!

A very dear friend of mine has a similar story with her second son. She is gluten intolerant, and has been off gluten for over a decade before she had children. Her second son was exclusively breast fed, but after a few weeks, he had severe cramping, crying, not gaining weight, etc. He also had mucous in his stool. Long story short, she stopped eating dairy, soy, eggs, and corn (along with the gluten) and he thrived! She ate this way for over a year, and her son is now doing great. She is in the process of testing him for food allergies now that he is older, and I am not sure what the status is currently.

I hope your daughter feels better soon also!

[Lunabell]

You are a great mom for being on top of things and kudos to you for working so hard to keep BFing. I had to avoid dairy and soy with a couple of mine. I think if I had to add gluten to that list at the time, I would have thrown in the towel.

I would definitely follow with your daughter, as well. My 4 year old, who was just diagnosed with celiac, started showing symptoms whens she started solids. She fell off the growth charts, developed reflux and had bm issues. The ped suggested testing her back then, but I didn't think it was necessary as almost all of kids in the family(immediate and extended on dh's side) start out small and grow later. The difference is that she didn't start the crazy growth spurt that the rest of them do at age 3. I wish that I had done the testing then, and saved her from 3 more years of on and off pain.

[salexander421]

My story is VERY similar to yours! My almost 3 year old was a very fussy baby, never slept, and wanted to nurse CONSTANTLY. She also spit up a lot! Being a first time mom I just thought she was a fussy baby and never connected it with anything. I started her on solids at around 5 months (now I know that was too early)and she immediately started dealing with constipation. I weaned her at 12 months and gave her yogurt instead of milk(I was afraid maybe she had a lactose problem and thought she was doing ok with yogurt). She was still having bad digestive problems but they had gotten better so I just figured she was lactose intolerant. When she was 18 months old I had our second daughter who is now 16 months old.

Our 16 month old had severe reflux issues right from the start. She was a very content baby and great sleeper but as soon as she was done nursing she would throw up everything. The doctors were no help and said it was nothing to worry about since she was sleeping good. I did a lot of research and decided she had silent gerd. At around 2 months she started having green mucousy poo with blood streaks in it and would also get the blistery rash which would cause her to scream in pain. I panicked and went straight to the computer. Found out about milk protein intolerance and that set me on the path to a total elimination diet. I had to get to the point to where I was eating about 4 things (rice, lamb, squash, and pears)before I started to see improvements. At this point she was about 6 months old and I decided we should see a GI. GI said it was most likely multiple food protein intolerance and that I could either keep doing what I was doing or put her I formula. I chose to keep breastfeeding. Sorry this is long

Going through what I went through with the younger one made me realize her older sister was probably sensitive to some of the same stuff so all 3 of us started eating a very hypoallergenic diet. Our 16 month old is doing great as long as she and I (still nursing) stay away from gluten, dairy (casien), eggs, oats, and soy. Our almost 3 year old was still having some issues even on such a restricted diet which led us to find a new pediatrician. Our new pediatrician is the one who immediately brought up celiac and referred us to a GI. We had our oldest gene tested since she was gluten free and she came back positive for the DQ2 gene so we are now undergoing a gluten challenge which is not fun at all. We think our youngest is probably also celiac, she's had a some accidental gluten here and there and always ends up with sleep problems and constipation and grainy/sandy poo. We are trying to decide when we want to challenge her.

Just wanted you to know you are not alone. What doesn't kill us only makes us stronger, that's what I have to tell myself every day. It's hard, very hard. Thank you for updating us, I hope you get some answers soon!!