I'm A Bit Overwhelmed

[mom-to-claire]

I don't even know where to start but I'll try to give a background on my daughter and ask all the questions I have without writing a novel.

I have a 9.5 month old daughter who has been a fussy, poor eater, low weight gain since birth. I started her on rice cereal at 5.5 months. After 4-5 small feedings she vomited a lot and continued to vomit every few minutes for about an hour. She was vomiting up yellow bile by the time it stopped and then became VERY sleepy etc. We stopped all solids and reintroduced rice cereal again a few weeks later. After a couple feedings, it happened again. Decided to just do veggies and fruits. That lasted a while but since she had already been diagnosed with anemia at 2.5 months thought she needed the iron in cereal so started on oatmeal. Had a few feedings but didn't like it at all. Stopped for a couple weeks and then gave it to her in August. Same deal..vomiting until there was only bile and was very lethargic and sleepy. only gave her jarred baby food for awhile and then decided to try her on toast, cheerios etc. She ate them well, no problems. Gave her a waffle one day and had the vomiting again but only once and then she got sleepy. Did some research and thought it could be celiac but since she ate bread, cheerios etc for a long time without problem didn't think it could be. Found out that she could just not be exhibiting symptoms so thougth I'd try a gluten free diet. It has been a week and she is MUCH happier and more content. She has always been fussy, needy etc and now that she has been eating only veggies, fruit, yogurt, ground chicken, she loves to eat and is just so much of a different person. She was born at 7lb 8oz and still has not doubled her weight at 9.5 months. She is barely 14 lbs and is 26 inches long.

SO......we saw a pediatric GI today and we had some blood drawn..sorry not sure what test it was or how many they are doing. She doesn't think it is celiac but didn't really tell me why but did mention that rice cereal shouldn't have gluten in it. She feels it might just be an intolerance.

I am a bit overwhelmed thinking of a gluten free diet for her. I also have a 2.5 year old who doesn't really exhibit any signs of any problems.

I want to continue to make her happy but if I don't have to do gluten free I don't want to. If I reintroduce it and she is OK with it, I get the feeling from the reading I've done, she might just not be reacting but still have celiac or an intolerance. How do I know for sure what to do?

The thing that doesn't make sense to me is that she was/is a lousy nurser well before she started solids and was not gaining weight before solids. She was fussy etc all before starting solids. From what I've read, there is no conclusive info to suggest gluten is passed through breastmilk. Most celiacs aren't diagnosed until they are at least 9-12 months old. Does anyone have experience with a very young baby being diagnosed with celiac or gluten intolerance.

Sorry his is all over the place. I got freaked out reading all the posts and am even more confused than ever! Please give me any info you can!!!!!

[CarlaB]

It is my understanding from others on the board that the mother has to go gluten-free if she is breastfeeding a celiac child.

If your daughter is doing better on a gluten-free diet, dietary response is a valid diagnostic tool ... it doesn't matter if it's an intolerance or celiac as both can cause damage.

The rice cereal could have had gluten contamination if it was made in a facility that also processes wheat or oats.

Welcome to the board! Keep reading and asking questions. It's not as scary as it sounds, it just is in the beginning.

[jayhawkmom]

Welcome!

A gluten free diet is scary, but certainly do-able. While there is a difference between a Celiac diagnosis and Gluten Intolerance, the end result is the same...they both require a gluten free diet.

Our two younger children (ages 5 and 14 months) are both gluten free. My daughter has a "confirmed" gluten intolerance, while my baby is gluten free as a preventative measures as recommended by his pediatrician. He dropped from the 90th percentile to the 30th, and had diarrhea as well as other symptoms. He's not been tested, as his pediatrician believes that testing at this age isn't very accurate. But, we will do testing in the future, whether it's gene testing or stool testing or something else. I have no idea. It is difficult though, there is no doubt about that.

With my daughter, the results were so blaringly obvious that they could not be ignored. We went gluten-free with her in June, and she seemed to gain weight and grow inches overnight. She's 5.5 and is now up to 35 lbs....and she's grown 3 inches in height. She's no longer constantly doubled over in pain, crying... and vomiting all the time.

There is more I wanted to add...but I'm being yanked away from the computer. I'll be back to finish my thoughts!! =)

[Ursa Major]

Hi, and welcome to our board. Actually, anything the mother eats will pass through the breastmilk, including gluten. Meaning that if the baby has a gluten intolerance and the mother eats gluten, the baby won't thrive. Others here will tell you their stories of how their babies got better when they themselves went on a gluten-free diet. Your doctor appears ill informed on the subject.

I don't know if rice cereal contains gluten. But did it contain dairy? Most people with celiac disease or gluten intolerance can't tolerate dairy, either. Plus, it is possible that your daughter is intolerant to ALL grains (as I am), which includes rice. And JUST an intolerance? Intolerances may not cause an immediate anaphylactic reaction, but are just as serious as allergies.

You're doing the right thing. I doubt that the bloodwork will show anything out of the ordinary (even though it might), as celiac disease testing in children under five is highly unreliable and produces many false negatives. At your daughter's age diet is the best indicator. She is finally thriving and happy, now that she is gluten-free. You don't want to change a good thing by feeding her gluten, and possibly making her sick again.

You might want her tested for the genes by Open Original Shared Link at some point to validate your choice.

[phakephur]

Actually, anything the mother eats will pass through the breastmilk, including gluten.

If true, then wouldn't milk produced by cows that are fed wheat silage also contain gluten?

[CarlaB]

If true, then wouldn't milk produced by cows that are fed wheat silage also contain gluten?

Very interesting point ... maybe that's the real reason so many of us can't tolerate dairy!

[Ursa Major]

Yes, that is very logical, I should have thought of that, too.

[jnclelland]

If true, then wouldn't milk produced by cows that are fed wheat silage also contain gluten?

Oooooh, good question! So, is there any way to make sure that the cows DIDN'T eat wheat? What about organic milk? Any companies that guarantee grass-fed only?

Jeanne

[GFBetsy]

Another thing to think about is the possibility that she might be having a reation to soy. I believe that Gerber cereals (which say Single Grain or something equally silly on the front ) almost all have soy in them as well as rice or oats or whatever. (At least, they did the last time I looked at them.)

Now, you've mentioned that it seems she is feeling much better since going gluten free. That seems to indicate that she WAS having a problem with gluten. It is possible (even likely, I'm afraid) that she could have celiac and other issues (like soy problems) that could have caused the vomiting.

As far as the going through the breast-milk goes - one of my good friends has 5 children with celiac. The youngest is still only 7 months old. She figured out that the baby also had problems with gluten becuase my friend had been gluten free while at home (no sense cooking gluteny food just for herself ). One day she went to a party and ate a hamburger with a bun. That night (after nursing) her daughter woke up screaming. Screamed all night and then refused to nurse for 4 days. And the only different thing my friend had eaten was the bun. So she's just gone completely gluten free since then.

As far as the doctor's belief that it might just be an intolerance . . . it is possible. But the end result (that your daughter will have to avoid the food that she is intolerant to) is the same. And if your daughter had been gluten free for a week or so before having her blood drawn, the tests will not be accurate for celiac. (The tests for celiac are notoriously unreliable for young children, anyway). So the bloodwork might not return a clear and accurate picture of your daughter's problems, anyway.

Don't be "freaked out" by the other posts . . . celiac is life changing, yes, but it's not the end of the world. In fact, many people eat much healthier because they are eating gluten free. It takes more time and thought than just grabbing Mac & Cheese off a shelf, but cooking from scratch tastes better, anyway!

If I were in your situation, here's what I would do:

First: take her in for allergy testing. It's not the most accurate procedure in the world, but it might give you something to go off of.

Second: After you've had allergy testing done, start doing the "only add one new food every couple of days" thing. You already know that she's good with fruits/veggies/yogurt/and chicken. Keep those things as her staples and then add one additional thing at a time. So try her with just plain soybeans for a couple of days, until you're sure she's not having a reaction. Then, if she's okay with that, try her with just plain wheat. (I'm not suggesting that you try these foods first of all, I'm just using them as examples.) Since she's had such a clear (and repeatable) reaction to SOMETHING, I'd think that when you try that food again, she'll probably have the same reaction. And when you are adding just pure foods one at a time, you'll be able to tell more easily WHICH food she's having a reaction to.

Good luck, and I hope you are able to figure out some answers.

[phakephur]

Oooooh, good question! So, is there any way to make sure that the cows DIDN'T eat wheat? What about organic milk? Any companies that guarantee grass-fed only?

Jeanne

Most grained based dairy cattle silage is corn, but wheat is being used more. I think I read it can be up to 15%.

I was half expecting someone to post a reply about cows being ruminants and the gluten being broken down completely or something like that. Anyway, I'm wondering if gluten really IS passed through breast milk, or if it's possible that a gluten eating mother passes the offending protein to her baby via fingers or some other surface. In other words, is lactation the problem or is it the close contact between contaminated mother and celiac child?

Ursula, do you remember where you heard or read that?

Sarah

[TCA]

mom-to-claire,

I do know how scary it all can be since I've had 2 kids with similar symptoms. We went thorugh tons of testing for tons of things and finally tried the gluten-free diet and were amazed at the difference in our kids. That's all the proof we needed. I hope you get some definitive answers with your tests, but keep in mind that kids under 5 often have false negatives for celiac testing. It's very unreliable in young kids. If your daughter feels better without gluten, you may have your answer.

As for the gluten in breastmilk, I KNOW it passed through mine because of the results I saw in my daughter. I keept very detailed notes about her growth and issues and my diet and it is evident beyond argument that when I ate gluten she got very ill. The doctors now agree after looking at my data. I have a theory about this, though. Since going gluten-free for my daughter I feel soooo much better and never thought I had problems with gluten before. I wonder if the amount of proteins in the breastmilk have to do with whether or not the mother has leaky gut syndrome associated problems. I think I do. I've never seen anything published on this, but it makes sense to me. I know gluten passed through my breastmilk, but everyone's body is different. That's just my opinion, so take it for that.