Earliest Symptoms Of celiac disease

[lilysma]

Hello Everyone! New here. And I have a question for all of you seasoned pros!

My 5 month old daughter has had disgestional problems since birth. She was diagnosed with reflux at 1 month, and it took us until she was almost two months to find a formula she could tolerate to digest. She is currently on Elecare, which is a hypoallergenic, amino-acid based formula made by Abbott Laboratories for Ross Pediatrics.

After reading some of the posts, I've realized that some of these posters could be talking about my daughter! Before we found this formula, she had severe gas (could put my husband to shame, lol ) severe GI pain, constant diaper rash, and diarrhea. If she was not sleeping, she was screaming.

SHe does see a ped GI, and I was wondering what my next step should be to determine for sure if celiac disease is her problem? Should I request the blood test? celiac disease is the only thing that makes sense. I'm just not okay with not pursuing what is causing these problems, just because for the time being, she is doing okay on the new formula and with zantac (which I think works wonderfully, for her anyway. we tried prevacid and everytime, she projectile vomited it)

She is getting ready to start solids, and that really concerns me. I just don't want to put her thru months of trial and error if the whole time, we could know what the problem is, and make dietary adjustments from the get-go. I have already tried rice cereal with her, and she vomited that all up too. I also tried bananas, and those gave her the most terrible stomach ache and gas pains.

Also, I noticed from reading a lot of the posts that celiac disease is hereditary? There is no one in our family (that I am aware of, anyway) who has any problems like this. How common/uncommon is it to develop in a child that has no family history?

Thank you in advance to anyone who can answer my questions! I'm totally in the dark about most of this stuff, and I appreciate any info that anyone can offer! I'm just trying to figure out what our next step is!

[lovegrov]

There's no test that would be reliable at 5 months so testing is out at this point, and some experts aren't even certain that a child can have celiac at that young an age. Many people who have the genes for celiac never have celiac and others have it but never have symptoms, so celiac can indeed seem to pop out of nowhere.

You certainly should talk to the ped GI about this, but it seems unlikely to me that celiac is your answer at this point.

richard

[VydorScope]

There's no test that would be reliable at 5 months so testing is out at this point, and some experts aren't even certain that a child can have celiac at that young an age. Many people who have the genes for celiac never have celiac and others have it but never have symptoms, so celiac can indeed seem to pop out of nowhere.

You certainly should talk to the ped GI about this, but it seems unlikely to me that celiac is your answer at this point.

richard

Not to sound like I am disagreeing wth Richard who is very knowledgable, BUT My sons only sympton at first was reflux/gass.

Heres the thing, reflux/gass in a 5 month old is NORMAL in many cases. If the child grows out of it by 6-9months then you are NORMALY fine. My son was not dx'd till 18 months old. I hate to say it ,but I do not hink you have enough information to dx anything at this point. Definly see a GOOD pedi-GI doc and ask about celiac disease, but do not expect much yet.

[jerseyangel]

I would tend to agree with Vincent--reflux is common among infants, and most grow out of it by 1 year. My oldest son had reflux from birth until he was about a year--and it stopped. He seemed to be sensitive to certain juices, and some disposible diapers. There was a fair amount of trial and error in figuring out what was right for him. (He is now 25, and has never shown signs of Celiac) I would definately make mental notes of anything that is suspicious, and keep communicating with her doctor about her symptoms--I think it's great that you are keeping your mind open to the possibility of Celiac.

[lilysma]

Thank you all for the info. I guess that what really bothers me the most is that all the other babies I know with reflux are just fine with the regular formulas/or breastmilk with no restricted diet on mom's part. It just bothers me that she has to be on such a specialized formula, I was just wondering if there was a deeper problem than reflux.

THanks all!!!

Denise

[VydorScope]

Thank you all for the info. I guess that what really bothers me the most is that all the other babies I know with reflux are just fine with the regular formulas/or breastmilk with no restricted diet on mom's part. It just bothers me that she has to be on such a specialized formula, I was just wondering if there was a deeper problem than reflux.

THanks all!!!

Denise

While breast milk is the gentleist thing there is for a baby, and the healthiest, some of the foods the mom's eat does mix in the breast milk and can agravate reflux. So you would have to look at your diet to help there.

[happygirl]

lilysma-

Celiac is a genetic, heriditary disease. However, there are many people who are the only one who has (or knowingly has) Celiac....in other families, there are multiple Celiacs. Further, up to 70% of Celiacs are "silent Celiacs" --- meaning no symptoms, while others have debilitating symptoms. There are genes associated with Celiac, but many people's genes are never triggered or turned on. Many (like 30-40% of people) have one or both of the "Celiac genes" but it does not mean that you will have Celiac, just because you have the gene. Some people are 'born' with Celiac/get it as a baby, some do not "get" Celiac til they are children, adults, or elderly. (It is a puzzling disease, I must say!)

But, if a first degree relative has Celiac, there is a 1 in 22 chance of someone having Celiac also. Overall, the prevalence is 1 in 133 Americans have Celiac.

Welcome to the board! I hope that whatever the problem is, your child's health improves!

[Fiddle-Faddle]

If your baby is only 5 months old, I would hold off on solids for a few months yet. My kids didn't start solids until 8 months old, and they are not picky about what foods they eat.

Do you know any nursing moms who might be able to donate some breast millk? No matter what the formula manufacturer's claim, there is nothing easier to digest than breast milk. Even the "hypoallergenic" formulas don't come close, as they are either cow's-milk-based or soy-based, both of which are common allergens. Since your daughter is having such severe problems, you might even be able to pump some of your own milk, especially if you were able to nurse the first couple of weeks (it DOES come back with pumping--it's a pain to pump, but it might be worth it). If you choose to do something like that, you would need a lot of support, like the La Leche League, although some of their leaders are more pushy than supportive.

My daughter also had reflux diagnosed at 1 month, and I fed her half as much twice as often, which, really, really helped. I also held her upright (wore her in a frontpak and then a side sling at about 5 months) all day--that helped enormously. Lying down would let gas accumulate in her tummy and she'd wake up screaming.

Good luck--I know it's tough....

[TCA]

Your daughter sounds a lot like my kids. They couldn't tolerate ANY formulas. We even tried the Elecare with no luck. My daughter will be 1 year old next week and still can't tolerate any foods or formula. The only thing she has been able to handle is a little pureed avocado mixed in with the breastmilk. She has a heart defect and had one surgery last year and another coming up this summer. She also has a feeding tube. She's only 13 lbs. 8 oz. After her first surgery they put her on a supplement of high calorie formula and that's when her GI issues started. I told them my son (3 now) couldn't tolerate and formulas and they said she had to have the extra calories along with the breast milk. After a fundoplication for the severe reflux and still no weight gain, I stopped listening to them, took her off of all formulas and went on a gluten free diet myself. She has done really good with that ever since.

This has been a LONG road for us. Reflux is the only thing my daughter has been diagnosed with, but I know she has celiac, as does my son. The tests are so inconclusiv for the ilttle ones. My son had 2 negative biopsies and inconclusive bloodwork, but has had amazing dietary response.

They both had a casien intolerance at about 6 weeks old indicated by blood in the stool. It took a long time to figure that out with the first one, but a no brainer with the second. After I eliminated dairy, the blood stopped. My son had to have a scope to figure this out. After the scope, he was put on formula for a week to "clean out his system". It was terrible. They both projectile vomit and get terribly lethargic on formula. On just breast milk they are/were totally different - energetic and happy.

I know that my daughter almost died last summer. If I had listened to to docs, she probably would have. She's small, but very healthy considering everything. I wish I had known to go gluten free while nursing our son. He had some developmental delays that probably could have been avoided (walking at 16 months, crawling abnormally, and speech). If you can relactate I think you will find it helps your daughter tremendously. I know what a pain it is because I pump about 4 -6 times a day for my daughter. He life literally depends on it and she won't nurse.

I've given you a very abbreviated version of our story. I do hope your daughter improves. Let me know if I can help at all!!!!!

[chrissy]

my youngest (now 2 1/2) had really bad reflux---she had to have a fundoplication when she was almost 10 months old. she had alot of damage from her reflux, which was caused by a hiatal hernia. is your baby on a PPI? you might try using neocate formula, it is pretty expensive, but has been a godsend for a lot of mothers. you cannot have celiac disease if you have never ingested gluten.

christine

[TCA]

you cannot have celiac disease if you have never ingested gluten.

Just remember that gluten can be ingested through breastmilk. that's why I went gluten free for my daughter. Saying this makes it sound like formula is better, but my daughter reacts violently to formula. No one can figure out why. If anyone is interested, I did a graph showing the doctors how my daughter does with and without gluten. I wish I could put it in her for you to see what I mean.

Chrissy - how's your daughter today? Been thinking of you both!

[lonewolf]

You'll all probably think I'm crazy, but I'll tell you what I did with my daughter when she was 5 months old. She had a horrible time with projectile vomiting from about 1 month. I only breastfed. Believe me it's frustrating to feed a baby and then have all the milk barfed onto the floor, down my shirt, on the couch, ec. and then have her cry from hunger and have to try to feed her again. It was a rough 3-4 months. I took her to a chiropractor and he gently massaged her neck, pushed on one place with his thumb, and massaged again. No tears from her at all. She never projectile vomited again. I'm serious. And I never took her back, nor did he ask to see her again. A friend has a little girl who had the same problem and she took her to the chiropractor instead of starting her on acid-blockers and she had the same results. My daughter is now 12 and has tested negative for Celiac and doesn't have any health problems.

[jerseyangel]

Liz--Wow, that's amazing! I wish I had known about that years ago . BTW--thanks for the rec. for Sharon's Sorbet--I bought the mixed berry flavor--so good

[mommida]

I would work with the best specialist you can get to.

My daughter had projectile vomiting from the first attempt at formula (about 72 hours of age), even tried the most hypgenic available. She kept most of the breast milk down but always had odd bm's (I know what normal breasfed baby's bm's look like from experience). I did notice that her belly would bloat on occasion too. Doctors never took it seriously on examination.

I say that infants do show signs of Celiac, an unfortunately testing for recognizing celiac disease is just not accurate enough. My daughter was genetic tested at 16 months and is positive for both DQ2 and DQ8. ( Genetic testing was the only option at that point because she was hospitalized with dehydration trying to consume gluten for the standard testing for celiac disease.)

You are really in a tough situation. The age of your baby and the current tests available. You will need a doctor who really can go the extra distance and make the best choices for your baby's care.

Best of luck and keep us posted.

Laura

[KayJay]

Hello I am sorry if I repeat anything said already as I don't have enough time to read everyones replies

Your baby sounds a lot like mine. She has reflux and has been sick pretty much since day one. I tried to eliminate things from my diet but couldn't figure it out. I started her on rice cereal at 4 months and she couldn't tolerate that. I tried again at 5 months and she got sick then I tried fruits and veggies and no cereal and she got sick. She couldn't tolerate any formula and this is what we have learned from our ped. GI.

Maddie has a soy, milk intolerance possible allergy. She is exclusively breastfed now but she has elecare too if needed. Her doctor said no foods yet because if she has something and it damages her intestines then we give her something else then she is not ever getting better and will eventually develop an allergy or really damage her intestines. So she is almost 8 months old and still no food. We go to the doctor Thursday to see if she can start solids. The last 6 weeks she has been off everything and on Axid which is way better than Zantac in my opinion and she has done so great! She hasn't screamed or anything like that. It has been wonderful. So in short your baby might be too young to know if she has Celiac but it could be a milk soy problem. I would hold off on all solids and give her body a good 6 weeks at least to heal and then see if she can handle solids. Oh the doctor said that rice cereal has some soy in it so that could cause a problem too. On a side not isn't that Elecare stuff outrageously priced

Good luck and keep us posted.