Venting/need support for gf, ff, sf, df, diet!

amother

Wed, May 23 2012, 10:03 am

We've been dealing successfully with gluten free and fish free for awhile now, but my newborn was just diagnosed with a dairy and soy allergy. The baby is so sensitive that if I eat dairy or soy = the baby is sick with screaming, projectile spitting up, all over rash, and smelly gross diapers.

I nursed all of my other kids for 1+ years or more; but I honestly feel like I can't do this. At the same time, formula would cost us $35 for a small little container. I know the benefits of breast milk, but I feel like there is nothing I can eat other than things that I make at home completely from scratch.

Please don't tell me how enjoy life has wonderful cookies or how specific brands make wonderful everything free cereal bars. I know about Amazon. I know about Trader Joes and Whole Foods. I know that those brands exist. I'm frustrated. Breakfast is challenging - I hate the taste of nut milks and coconut milks in cereal. I hate the high priced store bought gluten free, df, sf breads - I like what I make at home, but I work full time. Combine all of that with our budget is not unlimited, and I'm trying to lose 10 more pounds by summer.

I felt like the worst mommy ever a few days ago when I accidentally ate something that had dairy in it. My poor baby's arms, legs, and tummy were covered with a rash, the crying was endless and painful sounding.

I think I'm looking for support at this point. And for someone to say that they've dealt with this.

allrgymama

Wed, May 23 2012, 10:08 am

DD wasn't diagnosed with her milk/egg/nut allergy until about a year old.

She herself through a nursing strike at about 3 months. Whenever I ate something she was allergic to (in fact, even before that; she vomited in the hospital the first time I nursed her and hadn't had anything to eat in about 18 hours and) she projectile vomited. She had eczema and was congested and had horrible diaper rashes.

I can only say that I would not have been able to take those things out of my diet. Call it selfish or unmotivated or whatever. Had she been diagnosed while nursing, I would have stopped.

I, for one, will support you whatever you decide to do. But you have to decide if it is the best thing for everyone (you, DH, other children and the baby) for you to continue nursing or if it is more important for you to happy and healthy and sane.

Good luck!

Mommeeeeeeee!

Wed, May 23 2012, 10:28 am

Hugs, op.
This is really tough. I have similar issues with my baby and can't have dairy, soy, fish, peanuts, citrus, and whatever spice or additive is in cold cuts/hot dogs/processed meats that my baby reacts to - not sure what bothers him about these foods because I don't know exactly what's in them.
I miss chinese food (soy sauce) but by far breakfasts are the worst, I know. I also hate all of the non-dairy milk options although I can handle a little bit in my coffee if it's coconut milk. It's been awful for weight loss because some days I just eat danishes and cakes because it seems like that's all I can have - and you can't even have most of that. I'm sorry you're going through this. Maybe we can support each other.
I keep telling myself not to look at the big picture but instead focus on just getting through one day at a time. I won't say I haven't just skipped meals many times for lack of anything else to eat, but that isn't great for milk supply. So I just keep forcing myself to eat eggs, eggs, and more eggs. One thing that works for me is to make up a batch large batch of pancakes using only permissible ingredients and keep in the freezer to be warmed up as needed. Maybe you can do that with gf flour. I've also made a list of the few foods I can have for breakfast and different ways to combine them so I'll have some inspiration when I'm starving and can't think of anything permissible.
For me, quitting nursing is absolutely not an option so I just focus on ways to handle it, and hope he outgrows it eventually. Not gonna lie, it gets super tough at times, but wow, is this kid gonna owe you for the rest of his life!
You can do it!

rachel6543

Wed, May 23 2012, 12:17 pm

So, I haven't dealt with the food allergies your family is dealing with. But, I think you should do whatever you decide is best. Breast-feeding while working fulltime is hard enough as is. I worked fulltime while breastfeeding. I pumped at work until my son was 12 months old. After 12 months I only nursed evenings & weekends because it was too stressful to keep pumping. Nursing a child with food allergies is obviously even more challenging. Breast-feeding is obliviously ideal, but it's important for your family and baby that mommy is healthy and happy too. If you think it will be easier to switch to formula, then I say go for it. Ignore if people say negative comments about it. It's none of their business.

Best wishes on your situation. Hopefully in time your baby will outgrow some of these food allergies.

amother

Thu, May 24 2012, 9:15 pm

I really feel for you.

I nursed my DD eliminating dairy, soy, egg, nuts, and peanuts until 13 months when she quit. And meat and fish because I'm a vegetarian. She also had to get a formula supplement (alimentum rtf). My DS was a little different: 3 months with the same eliminations and then we suspected wheat. I tried eliminating wheat and made it 3 days before my milk plummeted. I ended up rotating in certain of the allergens about every 4 days, going by reactions in terms of what to keep out of my diet and re-try periodically. (After consulting with an allergist.) Otherwise I couldn't keep up with him and he could not tolerate any formulas, even Neocate, at that point. Ultimately, when I went back to work, I just couldn't pump enough and he still had to get a little formula (alimentum rtf for whatever reason was less of a problem than neocate) even though he could not completely tolerate it. When he was a year, I quit working and we were able to drop formula and he just nursed all the time. Both kids more allergic now than as babies, what can I say? And we recently put them Neocate Jr. and it's one of the best decisions we've made. At the moment, we are very limited in what we can have in the house. It is what it is. But that doesn't make it easy for anybody. So, I can really empathize with your situation. Just know that you are not alone. And I totally agree--GF store bought stuff--have yet to find anything "wonderful.". Smile

Well, maybe the enjoy life chocolate products... I try to focus on "eating to live," but that's not always so comforting and can be very hard especially around chagim.

So, I just want to say that whatever is going to reduce the pressure on you is what you should try to do. Breastfeeding with your eliminations is very hard. Especially if your baby is still totally dependent on you. You have to remember that food is food. Is breastmilk ideally the best food for a baby? I think so. But formula is an option that some people need, and I for one, am incredibly grateful that it exists. Super-sensitive kids--sometimes its the best option for them, that can give them the most reaction-free nutrition. Have you tried any of them with your baby yet? I would make certain that the baby can tolerate one before you start to wean, if that's what you decide to do. Just based on my experiences. If the baby can, but you still want to bf, maybe the diet will be easier for you if you're also not "on" all the time--nurse when you are home, but not pumping at work, etc. Less pressure. The other thing that I want to mention, and not to scare you, but because I think it's something worth considering, many kids do not outgrow dairy/soy by age one. And hypoallergenic formula is probably the best option for them if they are not nursing at that point--the nut/rice etc milks do not have the same nutritional profile. It is a lot easier to force a baby onto formula than a toddler. Just fwiw.

The cost. It is really expensive. From the price you noted, I assume you are in the U.S. and referring to Neocate or elecare. Have you checked (and then double-checked) with your insurance as to whether it is covered? If you are in certain states, I believe it has to be covered for certain conditions. The Neocate website has some information in this. When it is covered, it is usually under the "DME" ("durable medical equipment") portion of the policy. And you get a prescription from your child's doctor. There are many dairy/soy allergic kids who can do alimentum, even though it is not as broken down, so that might be something to consider and discuss with your doctor as well if you have not trialed any of them yet. (One note--alimentum smells horrible, but it does not taste horrible--my daughter drank it until she was three; it does not have a hechsher, but our rabbi said it was not an issue. YMMV. Neocate is not hechshered, but is approved of by the London bet din--it smells less horrible.)

Have you looked at kidswithfoodallergies.org? It's a great website and support community for families managing with food allergies, and they have a breastfeeding with eliminations forum, as well as one for formulas and lots of BTDT perspectives.

And you are not a bad mommy!!! Things happen, cross-contamination, misreading a label, etc. It all happens.
You're doing a great job. Good luck with your decision!

MaBelleVie

Thu, May 24 2012, 9:57 pm

Hugs, OP! It's hard, I know. I nursed a baby with a bunch of food allergies, and I was very strict about sticking to my diet. The only positive, besides the benefits of nursing in general, was the fact that I lost a ton on weight. I just didn't have the time or energy to meal plan and then cook everything from scratch. Eventually, though, my doctor was worried about my weight loss, and that was a factor in deciding to wean him. The day I broke that diet for the first time in a year was a very, very happy day Smile

I don't regret my decision to nurse, but I would absolutely understand why many times its just not possible.

Seraph

Thu, May 31 2012, 7:24 am

amother wrote:

I'm not on as strict of a diet as that, but nearly the same in terms of what I cook. I'm gluten free dairy free and the only soy I eat is soy sauce, and don't have fish often, so much of what I cook would work for you. (Lots of recipes on my site under the recipes tab.) You can patchke if you want, but you don't really have to. Baruch hashem your baby isnt sensitive to nightshades like tomatoes and potatoes and peppers, because that would make life really annoying... Or egg free, or corn free.

Breakfast ideas- pancakes. Smoothies. Eggs... And often I just eat supper leftovers... In my smoothies I put in fruit like bananas, apples, pears, stone fruit, berries, whatever, and techina and water. I sometimes make a peanut butter banana techina flax seed smoothie and that's delicious, and its really filling.

I found instant mashed potatoes and rice noodles (the kind that soften in boiling water but don't need cooking) to be a big mechaye. And frozen peas and beans. And chicken breast. And eggs. Because I'm able to cook all those quickly. Lentils also are a good protein. Try looking at indian recipes- many are dairy free, soy free, gluten free, and fish free.
And rice is good.
I sometimes make polenta for breakfast. Kind of like cream of wheat. Just take corn meal, add boiling water to it, whisk it, then heat it on the stove for a minute or two until thick. Season like you would oatmeal, with cinnamon, sugar, salt, etc... And add some milk if you want. I don't always bother
with protein in my breakfast because I noticed that by living GF I tend to have a ton of proteins in my diet, so I don't need to have them every meal because I have a ton even in my snacks...

In terms of costs of these special diet foods, the formula is more expensive than you'd be paying for special diet foods...

Quote:

I felt like the worst mommy ever a few days ago when I accidentally ate something that had dairy in it. My poor baby's arms, legs, and tummy were covered with a rash, the crying was endless and painful sounding.

I think I'm looking for support at this point. And for someone to say that they've dealt with this.

I know what you mean- I used to be able to have no dairy, only butter... but now, if I cheat and have the tiniest bit of dairy, even butter, my baby screams her head of inconsolably... So I make sure to be very strict...

Seraph

Thu, May 31 2012, 7:46 am

Just wanted to add that if anyone misses chinese food, Coconut Aminos, a soy free gluten free chemical free soy sauce replacement, is certified by the star K.

Also, breakfast can be rice pudding...

syrima

Thu, May 31 2012, 7:51 am

Wow.

I breastfed all my kids without any dietary restrictions. it was hard enough to just get a chance to eat!
I don't know what I would do in your situation. That is just soooo hard!
Maybe get your kid used to taking some formula, even if you don't plan to use it on a regular basis.
That way, if you want to have your fave food for a special occasion, you could substitute a bottle for the next feeding or two.
(Speaking as a mom who had 2 kids who just did not take a bottle no matter what...)

saw50st8

Thu, May 31 2012, 7:59 am

I feel your pain op! I am dairy and fish free, and I suspect my baby needs gf also (I know I do, but I am having trouble committing to it for me).

Breakfast is the worst. I often just have a banana or something and eat an early lunch.

Seraph

Thu, May 31 2012, 7:59 am

syrima wrote:

Wow.

Bad idea, sorry. Some of these things can stay in your body/milk for up to a month...

amother

Thu, May 31 2012, 8:03 am

I can only understand too well what you are going through. My baby was also diagnosed with severe egg alergy when 3 mos. old. Then it turned into milk and soy as well. Anything with egg, like cake I could not eat. If I did, he would scratch himself bloody and I would feel horrible.

I also worried that I would not be able to afford formula for him. But at one point I just made a decision to stop nursing and hashem will help. In the end he could not tolerate the regular formula and the allergist suggested Nutramigen aa for him, and guess what the insurance is covering it. I do not have to pay. It did have to be preauthorized and I guess I was lucky that it went through. Maybe you should try as well, or try to get your formula through wic.

Good luck

cbsmommy

Thu, May 31 2012, 1:28 pm

Our ped said 10 days for milk to leave your body. Gluten antibodies can take 6 months to dissipate (but that is from a high amount of daily eating to eating none what-so-ever). No clue what soy or fish would be.

anonymrs

Fri, Jun 01 2012, 2:02 am

I did egg, dairy, soy, meat, nut, peanut, and sesame free for my dd until she was a year. She is still nursing but now that she also eats food, I added some things back into my diet. It is super hard but was worth it for me.

If you do choose to stop nursing, pm me if you are in the US and I can try to help you get formula at a VERY minimal cost.

TSmom

Fri, Jul 27 2012, 7:39 am

You have a decision to make- you can move to a formula or you can make a full commitment to try and nurse. If you decide to nurse it means 100% avoidance for you. No having something and giving a bottle for a few feeds.

I have avoided that list and more. Once you find safe foods, it gets easier! Feel free to pm me for recipes.

some brands- daiya, cherrybrook kitchen, enjoy life.

You can do it. A trick I learned is always keep soups and stir fries frozen in 1 meal serving size. If you are starving just pop it in the microwave.