Breastfed Baby = Celiac?

[jen-r]

I have here a 7 month old who has been diagnosed FTT. He was nearly 10 lbs at birth but dropped sharply and has been hugging the 3rd percentile line pretty consistently since.

He's exclusively breastfed though I started some (home-made) solids last month (fruits, no cereal)

He tested positive for dairy, egg and wheat allergies. He has chronic moderate/severe eczema issues and once broke out in giant hives which I think was a result of corn chowder I ate once, but he was never tested for corn.

I went on a diet, eliminated all dairy, egg, wheat, corn, and all derivatives, incl. soy sauce and other cross contamination stuff I researched. After about a month on that diet, he gained a little weight. Last month he gained 1.5 lbs! Dr keeps saying he will run the celiac test but doesn't, but then tells me he thinks the baby is merely not getting enough "calories" as he puts it. I think he is trying to scare me straight - "oops, better feed the baby!" This is my 3rd nursed baby, I like to think I know what I'm doing but I guess not. I have tried supplementing with bottles of pumped milk to get him to gain, but even if I can get him to take a bottle he'll skip a nursing session later. Aside from these issues he's fine, thriving, chatty, happy and meeting milestones. I actually disagree with the FTT assessment but I am concerned about the lack of weight gain.

I feel he has been a lot better off on that diet, but I'm not sure if he is celiac or not. Or if allergies can cause malabsorption and FTT? What's involved in testing babies? Is it reliable?

My daughter was also borderline FTT, they didn't do this to me with her, but I always felt she had malabsorption issues. Even at four, she's a tiny little thing and she's going to eat me out of house and home soon.

Can anyone relate? Does anything sound off to you?

[Kibbie]

I honestly believe that usually the parents gut feeling is the correct one. Are you dealing with your regular pediatrician or a GI Dr? That can make the difference. My pediatrician has flat out told me that she really knew nothing about Celiac disease when my daughter was diagnosed and my primary care physician was chalk full of bad and wrong information when I talked to him about getting my bloodwork done.

A good friend of mine is going though much of the same thing you are right now. He's got extreme eczema and gets hives occasionally and it a very itchy boy. On the RAS test he was a 5 for wheat, 4 for dairy, 2 of soy, 2 of oats and she's sure he is having a reaction to corn. He is shorter than she thinks he should be and they had him tested for Celiac Disease too (though the tests are not back in). She has eliminated all of his allergens from her diet and decided to go gluten free as well since she was already avoiding wheat and oats.

She's noticed a considerable improvement since she's been off of dairy (which she eliminated first because her oldest has a dairy allergy) Either way she has one sick little guy.

They were told to introduce solids but have decided to not do what the pediatrician says in this case. Their reasoning behind it is that his allergies are not currently under control so introducing new foods at this time would be a very bad idea. They are however considering trying a hypoallergenic formula for a week to see if he has any improvement. (Her Dr. gave her one that is soy free, dairy free, wheat free, corn free, and oat free but I don't remember the name) I'll let you know what happens maybe it will help you guys!

[Pattymom]

Your story sounds a lot like mine. My dd is now 3 1/2, but as an infant she was rashy, cranky, and had foul BMs-mucousy,stinky until I changed my diet, I ended up off gluten, dairy, soy, nuts and corn, and she was great, rashes cleared up and BM were normal, she was still pretty tiny, following the 15 percentile line, but as long as they are following a line it doesn't matter as much which one, birth weight is not always an indicator of final size. She is my 4th baby, so I felt good about knowing how much to nurse her. It did bget old hearign people exclaim over her msallnes, but she hit all her milestones, and my MD actually said not to worry about size as long as she was growing. That said, when we intorduced gluten at 2 years to test her, she had no reactions at all, and a negative blood test, but that's when she reall stopped growing and fell off the growth charts all together, we retested, still negative blood work, but she is off gluten again anyway, a little growth spurt at the beginning, but not much since then, She sees the endocrinologist again end of the month.

As far as me feeling better, I felt great on the diet and I didn't even know I felt that bad before. I asked my MD to run the celiac panel, and even gluten free for 4 months I came back a weak positive, I have been gluten free ever since (though I did add back the other foods after she was a year with no particular negatie effects) I think that continuing to nurse her is what kept her so healthy, happy, and thriving despite her allergy/sensitivities. She did see a Ped GI at around 9 months, and he told me it didnt' sound like Celiac, but a food allergy reaction, so maybe that's whe her test was negative.

It's also good to note that all my kids, and my husband and I are on the shorter side, so being bellow the 50% ins't always a bad thing as long as that's the line they always follow. I try to remember it's not a test score, and none of us want to say, "Hey I'm in the 99% for my age, that's right I"m the fatest there is" It's the loosing percentiles that's the problem. All my kids have been in the 15-20%, and still are, it was when dd stopped growing and lost percentiles that I worried.

Overall, trust your instincts, if you think something is wrong, it probably is. If you think ou have foudn the answer, stick with it. Also,if you are already following a gluten free diet and all thriving, go with it. When I read stories here of sick babies, I'm glad I went gluten free and kept her off for 2 years, I think I saved both of us a fair amount of pain. Adn even the year when she ate gluten, she didn't get too much (maybe that's why the test is negative) because I don't prepare meals with gluten. It's hard enoguht to find time to make one meal, let alone two.

[Pattymom]

Oh, just wanted to add, at first I was off only wheat liekyou listed for a about 3 weeks, and she was 75% better, excema gone, and only the occaisonal stinky BM. When I finally tracked the smelly poops, it turned out to the spelt pasta and the oatmeal (yes, I now some people can tolerate oatmeal, but not us) When we went off all gluten it got better. There was one bad incident with Rice chex, I hadn't considered the Barley malt sweetners-look out for them inmost cereals, but once we got that down, we did well.

We are thrilled to be eating Rice Chex again now taht they are gluten free. I made a batch of Muddy buddies (chocolate and Peanut butter) yesterday, the kids were thrilled. Maybe they'll gain more weight now!

Patty

[rick-spiff]

only give your baby (your milk)

cherries, pit and smash them

banana

prunes

blackberries

applesauce

grapes, remove seeds and smash

pears

blueberries

carrot

beets

yams

That is recommemded by my naturepath. Recommeded foods for 6 mo old.

I think that you should stick to gluten-free, dairy free, soy free, etc. for your diet and only give your baby these foods which are very easy on the digestion.

[Michi8]

When my first child was a baby, we had a consult with an allergy nutritionist about safe introductions of food. She provided me with guidelines for introduction, timing for specific foods and a Food Allergen Scale.

Based on these guidelines, cherries (cooked) and all RAW fruits are not recommended for into until 12-24 months old. Apples (cooked) and grapes are not recommeded until 9-12 months.

The safe foods (all must be cooked) for 6 to 9 months intro are:

Rice

Millet

Yam

Sweet Potato

Squash (all types)

Carrot

Beets

Broccoli

Potato

Green Beans

Cabbage

Pear

Peach

Banana

Apricot

Nectarine

Blueberry

Lamb

Turkey

I personally don't agree with starting with grains, as they are all hard to digest. Also don't believe that animal protein is necessary at this point either. Breastmilk should still be provided through the first year and beyond.

The reasoning for this choice of first foods is based on their potential for developing allergy. While cooking does change the allergy potential of many foods, some see less change with cooking than others. Raw apple is up near the top of the allergy list, and cooked apple doesn't fall too far below. Raw carrot has the same allergenicity as raw apple, but, when cooked, carrot drops to near the bottom, making it a fairly safe choice for a first food.

Michelle

only give your baby (your milk)

cherries, pit and smash them

banana

prunes

blackberries

applesauce

grapes, remove seeds and smash

pears

blueberries

carrot

beets

yams

That is recommemded by my naturepath. Recommeded foods for 6 mo old.

I think that you should stick to gluten-free, dairy free, soy free, etc. for your diet and only give your baby these foods which are very easy on the digestion.

[rick-spiff]

...your own personal decision, but we've never had any problems feeding my daughter on that list of foods.

and carrots and the other veggies would be cooked of course

[shan]

Mine was exactly the same, and we ended up in hospital for about a month, but htat's another story...

Seriously, i took off dairy, soy for BM and all acidic foods, like tomatoes and stuff for the exzema.

After all that, he still needed reflux medication, since that was what was really bothering him!! He was Mr Happy, smiley cheerful, whatever name you want to call him, he fust had FTT. DON'T stop nursing, coz that is not the cause, however many drs tell you to... I listened to the drs for both my kids and stopped nursing and i regret it

[jen-r]

thank you all for your responses

I am going to stick to the diet (it's easy to sneak things in) something recently gave him a bad face reaction, but nothing on the rest of his body (which is typical for him) I think th skin reactions may be allergies and he's growing out of them (hence it being easier for me to fall off the diet)

Definitely not going to stop nursing. Especially if he's allergic to milk

I am not sure if he's celiac (can do non-cc oats w/no problems, other glutens that are not wheat) or if it's allergies. Drs keep telling me that mere allergies will not cause FTT. It seems like once he got past a certain weight he "perked up" so to speak. Never mind that he had continuous skin infections to battle before that. I'm rambling

We gave him solids and he was majorly constipated. Ditched the solids for 4 days until it cleared out, and it finally did, so he hasn't had any solids and I'm still second guessing that choice to even start them. (He doesn't seem to miss them, and the first time I gave them to him he was all rah rah rah but the last time, he barely wanted it.)

I thought of reflux, my other son had reflux and my daughter never dx w/it but was a major spitter and had FTT. (WHY didn't they pick that up??) He's not showing many of the reflux signs I've come to know and love - ONLY when he's having a flare up, so I think allergy control can keep the reflux at bay, no?

All I know is the kid EATS and has all the signs of getting enough that I know of. Either something's keeping him from using that or he really is turning around on the allergen free diet and that allergies/infections can do that to such a small person.

THanks so much, and keep any other thoughts coming. I haven't ruled out celiac since there are things with my daughter that actually seem like she might, and if she does, then he might too.

I also wanted to chime in that I really felt better on the diet and didn't know I felt bad to begin with, that is totally me! I feel great! Frustrated trying to replace all my foods/routines, but never more energetic and motivated! That too keeps me coming back to this, wondering.

Anyhow sorry for the rambly mess

[Ursa Major]

I think BOTH the above lists are way, way too many foods for a six-month-old! Heck, for four of my five kids I didn't introduce any solids until they were eight months old (and I fed my oldest solids earlier because I had a bad doctor and didn't know any better), and they didn't miss a thing. And even at eight months they didn't eat a lot of stuff, I introduced solids very slowly.

Two of my grandchildren had eczema and gastrointestinal problems from nightshade foods (potato, tomato, peppers, eggplant). They found out when the twins were six months old, so my daughter had to give up nightshade foods (as well as dairy and soy) while she breastfed them (until they were 13 months old), and their eczema cleared up for the most part.

Before she eliminated their allergens they'd get a bleeding, raw bum with bowel movements after my daughter ate potatoes or tomatoes! Not fun for sure.

Unfortunately she wasn't aware of gluten then (that was before I figured out I am gluten intolerant), because both of those kids are also gluten intolerant (as are two of their three siblings and their mom).

Anyway, it sounds like you and ALL of your kids are gluten intolerant. You might want to feed your whole family gluten-free, it might do wonders for all of you. And I mean not just wheat, dairy and soy free, but also rye and barley and everything that has gluten in it. That might be the missing link, to eliminate the rest of the gluten, not just wheat.

Since celiac disease testing is VERY unreliable in children under six and yields many false negatives, your kids could still all have celiac disease, including the baby. The diet is the best and most reliable test in little children.

[Fiddle-Faddle]

Please be aware that vaccine reactions can cause eczema AND all kinds of other problems! I am not anit-vaccine, at least, not yet, but I do feel very strongly that only ONE vaccine should be given at a time, and that many of the current vaccines are not necessary. For example, hepatitis, which is transmitted mostly by shared needles and sexual contact, but the vaccine is administered 3 times during an infant's first year?

Nice coup for the pharmaceutical industry, but it could be harming your child.

Also, my oldest was diagnosed with a ventricular septal defect (a hole in the heart) at 7 weeks old--but the pediatrician very nearly missed it. He thought there MIGHT have been a heart murmur, but that it was probably nothing. He almost didn't bother to refer us to a cardiac specialist.

At any rate, babies with VSDs burn up an incredible number of calories just circulating blood. Not that I think your child has that, I just wanted to throw it out there just on the way-off chance that it might be an issue.

[Michi8]

I think BOTH the above lists are way, way too many foods for a six-month-old! Heck, for four of my five kids I didn't introduce any solids until they were eight months old (and I fed my oldest solids earlier because I had a bad doctor and didn't know any better), and they didn't miss a thing. And even at eight months they didn't eat a lot of stuff, I introduced solids very slowly.

Oh I agree with you there! I just posted the complete list as it was given to me. What I didn't show was how slow the process actually is for introducing foods. It starts with simply putting the food on the cheek and waiting for reaction. If no reaction shows within 20 minutes, then apply to the lip. If no reaction there, then for breakfast you feed 1/2 teaspoon. Looking for reaction within a 4 hour period. If no reaction, then 1 tsp at lunch, watching for reaction. 2 tsp at supper. Watching for reaction including changes in behaviour and sleep disturbance. The next day you avoid the food altogether and watch for delayed reaction....Day three try feeding a bit more, Day 4 is another day off, etc. The process of introducing a food takes a week. Based on this schedule, it would take more than 4 months to get through that entire list of foods!

Now that is if you choose to start foods at 6 months as suggested (which is 2 months later than is typically recommended by the health nurses and doctors!) I agree waiting 'til 8 months or later can be a good idea. However, some kids do show that they are ready to experiment with foods at six months...and others will give clear signals they are not interested until later. It's all about reading baby's cues, and applying caution based on family history.

Michelle

[Ursa Major]

Okay, looking at that schedule, and how careful you are supposed to be, including waiting for possible delayed reactions, it looks MUCH better!

I don't believe any four-month-old baby should get any solids at all. Six months isn't too bad, but no child actually NEEDS food besides breast milk until 12 months old.

That is when the internally stored iron runs out, and the baby should get meat for iron. And it is best to start out with vegetables, not meat, really, as they are easier to digest and you need to get the baby used to eating regular food.

If you wait until the baby is at least eight months old, you can just try mashing the food with a fork, rather than feeding 'baby food'.

That is what of course was done before there was such a thing as official baby food! Those jars can be practical for traveling, but are not needed.

The same goes for baby cereal. If the baby is too young for the regular food (as in normal porridge), then it shouldn't be given.

Unfortunately I listened to my doctor with my oldest daughter and gave her cereal at four months. By the time she was six months old she weaned herself, which was very upsetting to me. And she is the one with the most health problems of all my kids.

She was very intolerant to dairy, so I gave her formula until she was well over a year old. Still, she had her first bout of tonsillitis at twelve months, and she reacted very badly to vaccines as well. From the time of her first DPT vaccines she had a barking cough (like whooping cough) until she was twelve years old.

She is gluten intolerant, and has just been diagnosed with adrenal fatigue (she is 28 now). But she never, even as a child, had a lot of energy, just like me. She went gluten-free last year, and it helped, but was not enough any more.

[Pattymom]

Sticking to the diet sounds like the best plan. AS far as worrying about when to give solids, it varies by child, My first two didnt' really eat anything until 8-9 months, and then very little, my third started solids at 5 months, and was chowing down by 8-9 months. I watched each baby and their individual reactions and needs. If your baby is oding best on breastmilk, let it rest at that. And yes, controlling the allergy response can control the "reflux"

the other thought is on infections, including skin infections like you mentioned. A child whose immune system is burning up calories on other things will slow down in growth, so removign the allergens, and giving the body time to heal might help with weight gain a lot.

We did live just wheat, dairy and free for several months, before I took out all the glutens. For my dd, that made all the difference from occaisonal rashes, which were a huge improvement over constant rashes and diarhea when we ate everything, to totally clear. I think what gave me the final nudge to just try it for 2 weeks, was thinking how much better I felt even though I thought I was fine before, that even though she seemed OK on barley sweetened and oat cereal, maybe we should just see for 2 weeks. When I gave her some again after being off that short time, it was harder to deny the reaction. Sigh. I did miss the oats because that was made it possible for me to giveup wheat without loosing my mind. With the weird diets changes we have been through since I had kids 12 year ago, it always seems worse to discuss it then actually doing it.

Hope tihngs continue to get better at your house

Patty