Post by mamasoup030 on Jan 20, 2015 22:49:50 GMT -5
I thought I was having a bad week, but I had dinner with my friend last night and her family and her week has been worse. Her daughter is 11 months old and was diagnosed as allergic to milk, eggs and gluten. It wasn't all that surprising based on her experiences over the last few months and her husband has been battling celiac disease most of his life.
So my question, I know there were several ladies in our group that had similar experiences that I believe have mostly been brought to a manageable point. I won't call anyone out because I don't want anyone to feel obligated to help. How can I help her? She doesn't have a community like ours to lean on. I've tried to remember some of the information I've learned here, I suggested she push for an allergist and it made a huge difference for her. But what more can I do? Please help me to help her. (She gave me permission to ask you guys btw- she's been hearing me sing your praises every Saturday morning for months and she thinks y'all are pretty awesome). Thanks in advance!!!
Oh and she is still breast feeding and has been informed she has to follow the same diet as her baby if she wants to continue but they strongly suggested formula, which is ok to her but the choices are mind boggling. She will be donating all 500 ounces of breast milk she has stored to a milk bank since her baby cannot have it, they were thrilled.
I don't have any personal experience with allergies like that, but I have a good friend with a now 4 year old daughter who is allergic to milk, eggs, soy, nuts, shellfish, and gluten (among other things!). I remember she struggled a lot at first but got great advice and support, including recipes and dietary tips, from seeing a nutritionist. Her main worry was figuring out how to make sure her little girl ate a well balanced diet considering all of the restrictions. I would maybe suggest a nutritionist if she hasn't seen one already.
It sounds like you're giving her a lot of support - she's lucky to have you as a friend!
Post by xolastunicornxo on Jan 20, 2015 23:08:56 GMT -5
Wow, that's a really hard situation. I wish i had some insight, but I don't. I just wanted to say I'm sending good feels to your friend because I know being a mommy and then having stuff pop up that you never expected can be incredibly stressful. She is very generous for donating all that extra milk, it will go to baby's in need.
Also, you are a very good friend. Yes, we have this little community here and it's great, but how great that both you and your friend have this outlet to get help and answers. It's giving me the feels about all these girls tonight!!
Anyway, that was incredibly unhelpful in anyway, but I am sending good thought to your friend, I think you are a good friend and I like our little place here. End of story.
I'm sorry your friend has so much stress right now. I remember feeling that sinking, sick, overwhelming feeling. Food intolerances and food allergies are hard and a lot runs through your mind as you try to manage them. V has a few specialists, we see a GI specialist, a nutritionist and an allergist. I would say the nutritionist had been the least helpful for us bit it is still helpful to meet with one and talk things out.
Is your friend looking at Alimentum or Elecare as her formula choices? Do you know if she has a pediatric EpiPen?
Post by mamasoup030 on Jan 21, 2015 7:12:19 GMT -5
Thanks everyone! I will absolutely suggest she see a nutritionist! She has no idea which formulas to look at, we use the same pediatrian and they suggested to just switch to adult soy milk, and my friend isn't comfortable with that. She is hoping to find a formula and use that until her daughter (fingers crossed) outgrows the dairy allergy. I remember lots of talks about this on that other forum that I didn't follow so closely because it didn't apply to me. Any input on formula would be appreciated! Also, I know we had several mamas who couldn't eat dairy while bf, any links to websites you loved with recipes? I know I'm asking a lot, but I desperately want to give her places to turn, she's so desperate to fight for her daughter! I appreciate any and all help.
I love our community and I thank you for the good feels @elvk583, xolastunicornxocalishove and @surelycantbsrs !!!!
That must be so hard for her to hear and definitely overwhelming, I'm sorry she's going through this. I am gluten free, and my sister is gluten and dairy free, but I don't have experience with egg free as well. If her husband is celiac, she probably knows how to do GF pretty easily and with all the new products and menus, that should be slightly easier than it would have been 5 years ago.
The only thing I can think of that helped me at first was focusing on what I CAN eat instead of all the things I couldn't. That may need the help of a nutritionist to figure it out since all 3 are in most packaged foods out there, but most whole foods naturally meet those requirements (fruits, veggies, meats). Paleo products are gf/df, so those recipes may be some good options and there are a million blogs out there with recipes. Maybe you could research some recipes or offer to bring over a meal or some treats that follow the new diet. It sounds like you are a great friend to her!
Post by 88sharonlee on Jan 21, 2015 8:03:55 GMT -5
I have a co worker whose daughter has a dairy and egg allergy- maybe more I just remember those for sure because he bakes cookies and brings them in, he makes vegan recipes for her and his cookies are amazing! I know that's kind of off topic but I'll ask him if he has any recipe advice or cookbooks to offer. I don't have any advice personally but I'd hope that with so much awareness of food allergies these days there should be lots of help and support for your friend.
That must be so hard for her to hear and definitely overwhelming, I'm sorry she's going through this. I am gluten free, and my sister is gluten and dairy free, but I don't have experience with egg free as well. If her husband is celiac, she probably knows how to do GF pretty easily and with all the new products and menus, that should be slightly easier than it would have been 5 years ago.
The only thing I can think of that helped me at first was focusing on what I CAN eat instead of all the things I couldn't. That may need the help of a nutritionist to figure it out since all 3 are in most packaged foods out there, but most whole foods naturally meet those requirements (fruits, veggies, meats). Paleo products are gf/df, so those recipes may be some good options and there are a million blogs out there with recipes. Maybe you could research some recipes or offer to bring over a meal or some treats that follow the new diet. It sounds like you are a great friend to her!
I wanted to echo this. Maybe trying to focus on what you can eat would help her alleviate some of the pressure she feels. This is a great site for vegan (df and egg free) and gluten-free cooking:
Post by JEMandtheHolograms on Jan 21, 2015 8:25:28 GMT -5
You are such a good friend!! Here is where I can help:
Hadley is allergic to egg whites. I have learned you can sub approx. 1.5 tablespoons applesauce for eggs in any recipe. Hopefully that is a start. (Disclaimer, I'm not a very good baker, so take that as you want--it tasted okay to me.....)
A lot of items marked 'gluten free' are also egg-free and dairy-free (so H eats gluten free waffles even though she does not have an intolerance to gluten--they are just made with out eggs--am I making sense?).
Find an allergist, because this will probably also delay her baby's flu shot (H cannot get hers until March--long story).
It just so happened that H switched to whole milk (and off formula) shortly after her 11 month mark. She was fine. We just fed her lots of seasoned veggies and fruits and proteins. Money-wise, this will save your friend if she is considering a soy milk alternative to special formulas(trial and error on the 'special' formulas can get expensive, esp if her baby is already 11 months old....personal decision, just adding my two cents).
I haven't read through all of the replies, but I still BF and B was MSPI. It was hard but manageable after I got used to it. That said, we didn't have gluten or egg issues and that makes it much harder.
Basically, most premade food is out. With very few exceptions, you can't grab convenience snacks. Places like Earth Fare and Whole a foods do have a few lines that made my life easier, like So Delicious (coconut and almond milk products from yogurt to ice cream), and Rudi's for bread (not sure if they're egg free).
I formed a group for MSPI moms on FB. I can PM you if you'd like. There are others out there, as well. The MSPI Mama blog has a good list of recipes and vegan websites will too.
I felt completely overwhelmed when I we first got our diagnosis and the formula that our pedi wanted to put B on (PurAmino) was $45/can and not at all in our budget. You get really good at reading labels and you cook more. Like PP said, find what you do like and roll with it.
Post by mamasoup030 on Jan 21, 2015 13:16:15 GMT -5
Thank you all soooooo much!! I was overwhelmed when I checked back in here and saw the amount of responses. I cannot wait to share them with her tonight. I don't have time to read them now (work is cracking down on "productivity" this week, but I'll be stopping back in later after work). I LOVE n'13, thank you all so very much!
Post by 88sharonlee on Jan 22, 2015 9:52:40 GMT -5
Hey mamasoup030 just got a chance to speak with my coworker, he said the hardest thing is the baked goods but there are some great recipies now such as brownies that you can make with black beans which are really actually very tasty and some other subsitutions that might work. He didn't really have much advice on resources but he made it seem like its very overwhelming at first but then once you get used to it it doesn't seem like a big deal anymore- so hopefully your friend will find that to be true as well.
Also he said that its actually harder for him than it is for his little girl, she doesn't know any better so she's happy with what she eats but he has to always decide if he is going to make the whole meal allergy free or just make a seperate portion for her.
I'm sure thats not super helpful but wanted to pass that along.
Post by mamasoup030 on Jan 22, 2015 12:01:40 GMT -5
beckyj2013 she was concerned about the possibility of hormone issues with soy, but actually your soy milk link might have changed her mind! So thank you again! I'm home with a sick baby today, so I got a chance to check in, I can't repeat enough how much I appreciate everyone's input! It has already helped so much!!!
Post by debatethis on Jan 22, 2015 19:12:08 GMT -5
So, my sister has Celiac Disease, her LO (age 2) has a dairy allergy, and her DH is allergic to olives (so nothing with olive oil in it). I just IM'ed my sister to give me her tips and tricks, but the biggest thing your friend is going to need to do is decontaminate, pretty close to immediately. Stuff like counter tops, pots and pans (particularly nonstick), cutting boards and the toaster should be replaced if they have ever been used for bread. Gluten can become airborne and tends to get stuck in stuff/be next to impossible to wash off, so my sister basically has a GF home even though her family could technically still eat it - it's just too much a risk of cross contamination.
-Start looking into GF meals. These are often easier than attempting to find healthy GF substitutes for "regular" meals. I've found that the recipes on the Gluten Free Goddess blog are delicious and often DF/EF as well. PaleOMG blog is also good, from what I've heard. -Start reading up on "hidden allergens" as there are some items that could contain gluten/egg/dairy and you wouldn't necessarily know it. Off the top of my head I know soy sauce and BBQ sauce should be checked - the liquid smoke that is often used in BBQ sauce isn't GF and they can sometimes contain milk solids. Sometimes those items are noted on the label but not always. -Phone apps - there are a couple for Find Me Gluten Free (for eating out) and one that I can't remember the name of which is a barcode scanner for allergens in grocery stores.
I'll post more when I hear back from my sister.
ETA and I just realized that you said her H has CD already so hopefully this isn't too much new info for her - it should already be fairly common in their home.
We dealt with MSPI (milk/soy protein intolerance) with Spencer. At the time, they also suspected egg and wheat allergies, so we had to avoid those as well. I BF until he was 4 1/2 months old, but that seems so long ago now. I remember just finding things I liked that I could eat, and eating those things on repeat. Lots of avocados, meat and veggies and fruit. The hardest thing was giving up cheese!
We used Neocate formula with Spencer until he was about a year, and then introduced soy, which he tolerated well. We went to soy formula for a little bit, and then switched to soy milk. I don't want this to come off the wrong way, but why is your friend uncomfortable with soy milk? Just curious. The one we used/are using is this one. It was the highest fat I could find, and has no sugar or anything else added, just soy beans and water. I know they make toddler formulas, so if your friend really doesn't want to use soy milk or another non-dairy milk (I've also heard hemp milk is a good choice because it is higher in fat), then she can look into those. IIRC, I think cagoldi's son is using a toddler formula, but I may be wrong.
At 11 months, her daughter should be eating lots of foods now. The best advice I can give there is to read, read, read the labels. There are lots of choices and alternatives out there. She can look at Pinterest for "allergy-free" recipes, or google allergy free blogs. One that I remember reading was www.mspimama.com/ (not sure how many of the recipes are gluten and egg free, though). Also, another food blog that I read is heathercristo.com. Her daughter has some allergies, so a lot of her recipes are also allergy-free.
I don't know if you want to refer your friend to TB, but they had an allergy board. I'm not sure if moved over here, or if it is still active over there, but it was a good resource and they had a weekly check-in, so there is definitely support out there on the interwebs!
The good news, at least with milk allergies, is that a lot of kids grow out of them. I think we are on the other side with Spencer and I have been transitioning him to WCM, and he isn't having any problems.
ETA: missed a word...
So A was on Neocate due to reflux and MSPI until he was 4 months old. At that time, our pedi said we could try Gerber Gentle and he did just fine on that. beckyj2013 is correct; A was on the Gerber Gentle Toddler formula since around 9 months. Just after his birthday, we saw his Allergist and she suspected his continued eczema, hives, and diaper rash issues are due to various allergies but most importantly a sensitivity to milk. She suggested we go back on Neocate. I would have done it if no other options were available, but it's insanely expensive, and it tastes terrible. It was a battle to get him to drink it when we transitioned at 5 weeks. There was just no way he would accept it at this point given how many other flavors and foods he's been offered. I asked if we could try soy milk since he was tested for an allergy and did not react, and she agreed we could do that and see how he handled it.
Thankfully, that's gone really well. We're using Silk Organic Unsweetened. He continues to have eczema and diaper rash but it's slightly better. I don't know if we'll ever figure out the cause of that but he loves the soy milk and it hasn't caused any issues. It's not that he can't have any dairy at all in our case, but it has to be limited to small amounts of cheese or yogurt a couple times a week.
Her options are pretty limited if she doesn't want to entertain either soy milk or soy formula, in which case she would be looking at an amino acid based formula that is very costly. And all amino acid based formulas are foul tasting, so I don't imagine she would have an easy time of getting a baby that age to drink much of it at all.
Post by mamasoup030 on Jan 23, 2015 10:05:38 GMT -5
Update: my friend has a follow up doctors appointment this morning with the pediatrics after seeing the allergist last week.
She is taking the information you ladies provided to work out what she can do for her LO. It sounded like she was going to go the soy route when we spoke last night and she is so grateful for all of your input! She also plans to visit a nutritionist.
Her DH is CD but he cheats, the information on the toasters and counters from debatethis will definitely be news to her so I'll share that when I hear from her later. cagoldi thanks for the tips on the amino acid formulas, I'll let her know, I think she's pretty sold on soy at this point but your information will ease her mind. It's so difficult when you want to do the right thing, but you don't know what it is!!!! I appreciate all of the feedback, you ladies are amazing!
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