DS is sensitive to EVERYTHING so it seems... Help

[ck1]

Our son is 15 weeks old today and it's taken us a bit to figure out that the gas problems he's had from birth is not normal fussiness; he is most likely allergic/sensitive to certain foods. I've kept a food journal and for two weeks we've completely eliminated dairy and soy down to the ingredient level (before that it was just obvious dairy).

The problem is my diet is sparse now. I was doing the elimination diet Dr. Sears suggests, but with a few foods I know do not upset DS. But now when I add back food he's sensitive to all of it! He cries, screams, passes gas, strains, fusses, and is unable to sleep. It was pretty bad the first 15 weeks, with just a few days of peace. We endured it because the doctor kept telling us it would go away, but it has never gotten better. I should clarify that he doesn't have colic, he's fine and happy, but would have these episodes, mostly at night, where he struggled to pass gas and poop, or his poop was frothy, explosive, and had blood in it.

Well now he's very chill on the diet, thankfully, and he's on reflux medication, which is only a minor problem. But I'm at a loss as to what to eat and it's driving me crazy! I'm not placing him on formula; this is our second son so I would like the same nursing experience as I had with our first. But how do you get through this???

We have a appointment with a GI doctor. What happens at the first appointment, can anyone share? Will they be able to tell us something, or is it just a check up and we have to come back, or see an allergist? It's difficult to get quick appointments with the specialitst, should I go ahead and make an appointment with an allergist? But I don't think he's "allergic" just sensitive. The times he had blood in his stool was from specific foods that I know we can't have again, so I'm not worried about that.

Please help... not sure how to proceed with how we're eating to be sure he's getting good nutrition. So far I'm eating rice, chicken, avacados, bananas, apples, dairy free cookies, rice milk, some cereal, pears, and that's about it!

Thank you!

[BabySmurf]

if the poop was frothy, have you considered oversupply syndrome?

we've had the same problem with my DS, but we have remedied it in the reverse order...when DS was a newborn he was cranky and gassy and would have bright green frothy poops...turns out i was making waaaaay to much BM, so DS was getting too much lactose, which can cause gas and fussiness and colic-like symptoms. i started block feeding (feeding off of one breast for several hours, then switching sides for the next several hours) in an effort to reduce my supply.  it worked, and after a few weeks, DS's poops would rainbow between green and yellow. 

then his poops started to stay green and then the mucus appeared...my first pedi said that i was silly for considering an allergy and that it was perfectly normal, that DS was just "colicy".  so we ignored it, until i started to see blood, at which point our new pedi suggested eliminating the dairy.  at first i did it on a casual level, and now i am being super diligent about it.  the dairy can take a few weeks to totally get out of your systems, even though you should notice positive results sooner.  for good measure i have eliminated dairy and soy, and it's not easy!

if you search through older posts on here you will find some great websites that will give you ideas on what you can eat.  i also try to shop in the organic sections of supermarkets or good health stores, as they are more likely to carry the specialty and dairy/soy free items.  i even found coconut ice cream! i've been looking through allergy and health forums forums, since they are more likely to give recipes for things you can eat rather than things you can't.  also, once you find brands that you like, you can take any recipe and substitute ingredients. 

sorry i don't have time to track down the websites right now!!

good luck!

[anjsmama]

No help on all the digestive issues - I've only recently figured out DS (35 months) total sum of intolerances and sensitivities. DD (6 mo) I am still working on...  UGHHH. BUT I can help with what you can eat while on the elimination diet:

Range-fed organic turkey

Wild salmon

Some citrus like pineapple should be fine
Mango

If you've added back in almonds (easiest digestable nut, IMO) you can do almond milk, almond butter, pears with honey & almonds

Sweet potatoes

Peppers

Berries

Rice pasta (like the noodles) with olive oil

Trying to remember what else I ate when I was on the full-scale diet.... if I find the list I had here on the computer of safe foods I will send it!

[birdhappy85]

For a dairy substitute, I would consider buying goat milk. People with dairy issues typically have issues with cow milk products specifically, and goat milk can be a godsend! It's more natural than rice, almond, or soy milk and has more of the benefits that animal milk brings. If you are able to acquire raw goat milk, it actually is the most "complete" food available and the closest to a mother's breast milk to be feeding a child (although to a lot of people it's controversial). I developed an autoimmune allergy to cow dairy at the age of 20 but I'm not lactose intolerant. It's an allergy to the protein casein. I also ended up with an intolerance to gluten just within the past year at age 25. I notice that I do best if I stay away from soybean oils too (like in mayo or margarine). I had blood tests done for years by several physicians and the tests always showed up negative for any allergies or intolerances, so I try to caution people that they shouldn't stop there and accept a diagnose of "nothing is wrong" if they are clearly experiencing symptoms! I was finally diagnosed by muscle testing with a chiropractor, an ELISA/ACT blood test for autoimmune allergies (not widely accepted by the average doctor), and my own trial and error through an elimination diet. I have seen numerous GI doctors and even had an endoscopy at one point to determine if I might have Crohn's or Celiac disease because I was in so much pain. Again, please seek alternative opinions maybe in the more naturopathic arena of healthcare if you don't get the answers you need from other doctors. I suffered through years of invalidation, depression, and horrible symptoms with no hope in sight because my doctors were in denial that something may still be going on since they couldn't figure it out. Plus, when doctors focus on just "allergies" they tend to rule out the spectrum of intolerances that can't be detected as easily.

It sounds like you're already choosing some good foods, and other people had great suggestions! I am in love with rice pastas. They're expensive, but I actually like their texture better than regular pasta now (if I undercook them compared to the time suggested on the label). I also do a LOT with rice. I've had fun experimenting with new dishes and just randomly throwing things together that turned out amazing. We make stir fry a lot with a bag of frozen veggies and any meat of our choice. We use gluten-free soy and teriyaki sauces. I also found one GFCF bread that I really like, so that has helped. There are GFCF waffles in the frozen section of most grocery stories too (well, at least around here they have them). So I'll have waffles for breakfast sometimes and put peanut butter or almond butter on top with some blueberries or banana slices. Very filling and yummy! I wish I had more options as far as yogurts and other dairy products go, but goat products tend to be expensive so I don't get them a lot. There are goat milk yogurts out there that are super tasty, though, and I eat goat feta and other goat cheeses too. I have so many meals that I've come up with, it would take me forever to list them here. But really if you just have solid substitutes for various ingredients, you can make most dishes taste practically the same! That's how I came to have so much variety in my meals.

Oh, and one note about butter... You may find that you can eat butter and your son could be just fine. I stayed away from it and ate margarine for years because I thought it was healthier (which was untrue) and figured that since it is derived from cow milk, I'd have a reaction to it. Actually, I learned from discussions with some friends who own an organic farm that most people don't react to butter because it has milk fat in it and little casein or lactose. It's also better for your body than the soybean oils and other bad fats in margarine. If you want to strictly avoid lactose and casein, though, there is a clarified butter out there called "Ghee" that tastes good too! I do well with either of them. It's hard to find mayonnaise that doesn't contain soybean oils, but I found a canola one. You have to read labels meticulously because I believe there's a Hellmann's canola mayo that still has soybean oil in it.

For cereals, try to stick with gluten-free Chex. I eat the plain and honey flavored ones. I also eat gluten-free oatmeal often. Um, what else... Don't be afraid to eat a lot of stuff you normally would, as long as you're eating mostly whole foods (non-processed) and you have substitutes for other stuff. It's overwhelming at first but you'll adapt quickly, I have no doubt!

[scsigrl]

Originally Posted by birdhappy85 

For a dairy substitute, I would consider buying goat milk. People with dairy issues typically have issues with cow milk products specifically, and goat milk can be a godsend! 

If you want to strictly avoid lactose and casein, though, there is a clarified butter out there called "Ghee" that tastes good too! I do well with either of them. It's hard to find mayonnaise that doesn't contain soybean oils, but I found a canola one. You have to read labels meticulously because I believe there's a Hellmann's canola mayo that still has soybean oil in it.

Your comment about goat milk isn't true if it is an allergy.  Something like 95% (maybe 98%) who have issues with cow milk will have an issue with ALL animal dairy.  Same with the Ghee. If it turns out to be an IgE allergy, these are not acceptable subs for that person.

[birdhappy85]

Oh okay. Well I was just speaking from my personal experience with an autoimmune allergy and intolerances and what I have learned from that perspective. I do not have a straight "allergy" like some people might, although some of my symptoms are pretty strong like an allergy (breaking out into hives, for instance). I don't want to misinform anyone. Intolerances can be treated very differently than allergies. Since ck1 doesn't have explanations yet for her son's digestive problems, she may not know whether or not goat milk is okay, so it's good for her to know all sides of things.

[SweetSilver]

Welcome to the world of overwhelming allergies.  In our house my daughter and I have tons of (often competing) allergies.  Meals can be a bit dull to say the least.  I think it's easier when you are the one experiencing an allergic reaction to avoid a food.  Together we are allergic to rice and corn, eggs, almonds and most other nuts (she is off all nuts until she passes her peanut challenge in Oct.)  Luckily, we can eat most meats together, though turkey is now suspect for her.  Forget vegetarianism.  I have no vegetarian protein options left!  She can eat oats and soy, I can't.  I can eat wheat and some dairy, she can't.  She can eat most vegetables.  The specifics aren't important to helping you, I'm just rambling.  We both love quinoa and potatoes as a shared dinner, and, at 6.5, her palate is expanding.  Still, dinner is very simple, repetitive, and usually short order (add into the mix a very typical 4yo picky eater!)   We've gotten used to it, for the most part.  I think it would be harder knowing that I could start eating those foods again once I stopped nursing.  As it is, we are stuck with this for life.  Makes the adjustment easier.

     I will say two things about allergies, especially dairy.  One is that if the dairy trouble is an allergy, it needs to all go, every ingredient, every species, all of it.  Allergies, especially in kids with many, have a uncanny way of getting worse before they get better.  That said, at some point after the challenge, you can decide what route you need to take.  If the milk allergy ends up being mild, you might get away with a little butter in your diet, or experimenting with goat milk.  My daughter is allergic to corn, but it's relatively mild.  So she's allowed a handful of popcorn, a small piece of an ear of corn, some hard candy.  By now we know how much and how often (not much and not every day).  This helps her deal with the absolute "no's" she is stuck with.  In my personal experience, a piece of cake with eggs and cornstarch frosting doesn't cause me much trouble, but eating another, or two days in a row does (kind of a good thing in a way, huh?)   But I absolutely cannot eat oats or walnuts or almonds ever ever ever.

     The beginning is the toughest!

[BabySmurf]

have you been able to achieve a "base line" normal poops for any amount of time? i would make sure that you have a good week of making sure that poops are normal before introducing anything, and then wait a good 4-5 days for a reaction.  introduce a particular food group at a time - i would do whichever is the hardest for you to avoid. if there is a reaction wait another 4-5 days for things to get normal again. 

buying kosher or parve (sp?) foods are good because they have to separate the dairy and meats, or have no dairy at all. two of the websites i have liked on here are these:

http://www.thespunkycoconut.com/

http://grainfreefoodie.blogspot.com/

they aren't elimination diet ideas, but recipes that exclude a lot of allergenic foods.  jay gordon and william sears both have elimination diet info...but basically it going to be really hard until you can find more foods for you to eat.

i haven't been to a GI doc, but we went to a dietitian who specialized in allergies, and she really wasn't much help.  very nice, but was not able to tell me anything i didn't already know.  i would agree with pp that sometimes you really just need to listen to your instincts and just keep trying things until the answer presents itself.  i really urge you to consider the oversupply thing though, since you mentioned frothy poops.  it will be really hard to tell which foods may be affecting your LO if his system is off from high amounts of lactose.

i hope you are able to work it out soon!

[kjbrown92]

The pediatric GI we went to loved my food journals. I had brought all of them with me for my DD2. At the time, she was on about 20 foods but the dr thought it was a balanced diet. And told me not to change it or add new foods for at least 6 months. So not exactly helpful, but at least she confirmed my suspicions and told me if I had any questions to call.

My son and my younger daughter both have food intolerances. When they were first tested, neither of them could have cow dairy, goat dairy, or sheep dairy. At one point we tried water buffalo dairy and that was a fail. But three years later, they've both gotten goat and sheep dairy back. So at some point (if it's not an IgE allergy) you might be able to trial it.

One of the questions I'd be asking is what foods have you tried adding back in? I have a list, compiled a couple of years ago, of everyone that was on this forum at the time and what the foods were that they were sensitive to. It was basically so we could figure out the low-intolerance foods. If you PM me your email address, I could send it to you (it's an excel spreadsheet). Even though you probably want to trial fun stuff, or things that would be helpful because you can do a lot of things with them, the farther afield foods might be more likely to pass. Are you only adding one ingredient back in at a time?

[kj1126]

Hi there!

I am new to these forums (posting, not reading) and I have recently just felt I needed to come over to the allergy forums and I created an account just to reply to this post. My son is also 15 weeks and I feel like I could have written your post myself. I am in some need of some serious help getting him to a baseline and not starving myself in the process. I tried the elimination diet once before and noticed such a drop in my milk supply I had to stop. My poor baby is so uncomfortable and I just want to make him better. I will likely post with his whole story later but in the meantime I just wanted to empathize with you and also see if I might me able to get a copy of that excel spreadsheet as well. I think it would be really helpful to us. I will send my email address if that's alright. Thanks!