Is this worth it? Or, convince me to keep up with an ED for my happy baby girl.

[HeatherB]

I've been on an ED, avoiding dairy and soy, for about two months. Of course, dairy and soy are really hard to avoid, especially when I had to travel, so despite my best efforts, it hasn't been perfect. I am quite certain she DOES react to both dairy and soy and I don't *think* she reacts to anything else - though I'm not 100% sure - just about 98%.

The main reason I've really thought it was necessary to do the ED is because my DD is very small - petite, shall we say. She doesn't look skinny or in any way malnourished (though, obviously, one can have issues that aren't obvious). She's what I would call "pleasantly plump" with creases/rolls in her thighs when she sits, enough tummy to squeeze/pinch, and an overall very proportional look - which is kind of funny given that on the CDC charts she's at 7th% for weight, 60th% for height, and her head is 75th%. On the WHO charts, her weight is just under 25th% and maintaining the curve pretty nicely. In fact, when the CDC chart showed her falling, the WHO chart showed her rising. (Which is just crazy, but I digress...)

So, she's small AND she has mucousy stools with occult blood. Sometimes, the stools irritate her skin. An irritating stool may make bleeding sores, but that's not very common.

And THAT'S IT. She's not fussy, she sleeps amazingly well, she is happy, developing entirely normally (very much like her brothers), she's active, talking, interested in solids (though we avoid them almost entirely because I'm worried about the sensitivity/gut issues)... She's NOT your typical allergy baby. She did have issues with congestion when she was younger but they've pretty well resolved. And sometimes I wonder if she (and my 3yo) have "allergy eyes." But there's nothing else of concern.

So I am going nuts trying to keep my diet "clean" and then realizing that the meal the waiter told me was clean actually had both soy and dairy in it and so she reacts... And we start over. And I'm constantly wondering if it's really worth it. I can get her "clear" frequently, and have challenged a few things on purpose (whether that was a good idea for my own sanity, or not, I'm not sure), to find that she does react to soft cheeses, cheese baked into bread, soy sauce, soy flour, etc. (Remarkably, some super-procesed soy/dairy items she does NOT seem to react to - but those are obviously not good for ME!) I feel like I've made progress but maintaining a clean/clear diet feels insurmountable. I realize that the more we eat at home, the easier it is, and we've been (unfortunately) eating out more than usual in the last couple of weeks. But, we do eat out every Sunday with a group after church... always Asian food. I LOVE Asian food and I do NOT love the soy-free main dishes at the place we always go to. If I have to keep with the DF/SF diet, I have decided I'll start eating just spring rolls with duck sauce... It's the only thing that seems at all yummy AND is clean. But I can't really not go eat with my family/friends every week.

So is it worth it? If she's totally happy, should I keep trying to avoid these things? Is it worth going nuts over? Should I just suck it up and do a food diary so I can better identify what might be causing issues when it does? (Like that sandwich that I was assured would be dairy free that came with a salad with a vinaigrette that had soy - and the bread had milk. ) Do I really have any hope of her outgrowing it, one way or another? If I could actually keep her gut free of dairy and soy for X amount of time, will it heal? Is there anything I can do to help it heal? (Slippery elm?)

Tonight, I felt like my brain would fry it I tried to think any more about what I could/should eat. DH (our main cook) insisted we needed to order something in. I finally decided to go for what sounded good, even if I knew some of it was "bad." I still ordered a salad with none of the soy-containing dressing (and thoroughly enjoyed it with a dressing from home), ate a flatbread that did end up with cheese on it (other than the goat cheese I ordered), but was AMAZING; and I got that piece of chocolate cake. 'Cause I just wanted a piece of chocolate cake!! So we'll see what happens to DD in the next 24-48 hours... And I may feel really awful. I really do have it ingrained in my head (and my little boys ask me about DF/SF all the time!) to stay on the ED, but it can be so hard. I am, at least, glad we're not having to avoid OTHER things!

So sorry to write a book... Please let me know if it's worth it and WHY. I need to have that in my head if I'm going to keep it up.

[scsigrl]

You need to decide that for you and your baby.  If she obviously reacts, then your options are to keep to the soy and dairy free diet, put her on formula or watch her react.  It isn't easy but many Mom's do stay on an ED for extended periods of time (Not TED's, but ED's once the issues are figured out).

Good luck.

[SweetSilver]

Your daughter was born almost a year ago?  Even if she is a happy baby, keep up the ED.  Even though she is a happy kid and her growth seems OK I would still do it.  But keep it in perspective.  Her need for your milk as a main food source is nearly over.  You won't need to keep this up forever.  By the time she is nursing for comfort you might be able to be more lax about this.  But right now she needs you to keep up your will power for a while longer.  Regardless of "happy" this is not good for her system.

Next perspective:  milk allergies do fade in many kids.

Next perspective:  if you are the type of person who can find comfort in the fact other people have it worse than you do, look back at the numerous threads from mamas who are eating only turkey and sweet potatoes and their babies are still having trouble and the moms are worried about losing weight and their milk supply with it.

 Don't stress if you accidently get something in the bread, just don't order something with cheese.  My daughter, 6.5, is severely allergic to dairy, so I *know* that if you stress that *you* have a milk allergy, the staff will check the ingredients for you.  But if you've done your checks and it slips in anyway, don't stress over it.

Wow... rereading this post it comes across as a bit stern.  I don't mean that at all.  I just think you need some encouragement to keep this going for a while longer.

[HeatherB]

Thanks for responding. Not surprisingly, my late-night ramblings probably didn't effectively convey my point.

I definitely do know what the options are - and formula isn't one of them.

I think my question boils down to - if intestinal issues are the only problem, how significant is it? How big of a deal, long term, is the inflammation that she must have? Are there studies indicating how important it is to reduce and heal the gut inflammation caused by allergies/intolerances?

Having in mind just WHY it's important helps a lot - and I guess I just came to a place of wondering about the WHY. If you have a child who screams for 8 hours if you have a glass of milk, it's pretty easy to see why you should avoid milk. But a happy child who simply has weird looking diapers can make a tired, hungry, stressed mama wonder what on earth the point is.

I do appreciate the encouragement. I have no question that we have it easier than many, and for that I'm very grateful! I tend to be very detail-oriented and a little OCD, so once I've decided to have absolutely no dairy/soy, it's not hard to keep it up, on some levels. But there are other planes of questions, decisions, and options that can drive me absolutely batty - and it mostly comes down to, how important is it to be 100% free of these things? Which ones, and in what preparations, can she actually tolerate? How and when is it safe or acceptable to trial things? How long does it take to allow a reaction to fully clear? And how much damage is being done when there is a reaction? How bad is it that the reactions get stronger? Will she ever "heal" and be able to tolerate allergens again if she's accidentally exposed to them here and there?

Since my original post, we met up with my husband at a restaurant we haven't been to in ages. And I realized that everything we eat there has dairy. Figuring it was worth seeing how she'd react, I ate a meal including a cream sauce - the most and "purest" dairy I've had in months. I think she was already coming down with a cold, and I can't say her misery that night wasn't just from the cold and not being able to breathe well while latching on, but her sleep was AWFUL. She couldn't be set down, wouldn't nurse, and cried and cried. (Exhausted, she finally fell asleep for the night sitting up, propped against me, while I sang to her, and later did nurse lying down.) She had more reflux-y sounds than I've heard in a long time, actually spit up (that cheesy, thick, sour stuff), and, of course, had mucousy stools. Again, I can't say everything was just because of the dairy - though cold symptoms could be related to it, too, I guess - but it seemed clear to me that she was having new and worsened symptoms due to the sensitivity. I've heard that an ED can result in increased symptoms on later exposure, and it certainly seems to be the case.

So, I'd still love answers to all those questions. But, at the same time, it's clear that she really is THAT sensitive to dairy, which, of course, means it's worth it to stick to the ED.

[heatherdeg]

I wish I could lay my fingers on it now, but food intolerances that go undetected and therefore not dealt with lead to autoimmune issues later in life.  In fact, I know that when I'm helping families deal with kids problems, the first thing I ask is if there is a family history of autoimmune disorders (there are something like 72 out there) and if there are--I'm looking to food intolerances first because they often run in families.  There IS research to support this, I just did all that work 6-7 years ago and lost a harddrive (and bookmarks, pdfs, etc.) since then and since it was so clearly ground into MY head, I didn't have need to refind it... kwim?  But it has kept me (a bona fide milk-a-holic beforehand) dairy, soy, and corn-free plus profoundly limited gluten; and I'm not even nursing anymore--we just all eat this way so my son isn't ostracized in his own home (he's now 7-1/2yo).

Mucousy stools are an indication of allergy.  Yeah, the blood might be sores, but that might be allergy, too--and that's not generally a mild allergy.  Is she NOT a happy baby when she gets those stools?

I know it's hard.  We generally don't eat out and when we're on our road trips, it is a LOT of planning.  Traveling places means staying in more expensive hotels to have a stove & fridge.  It's hard.

At the same time, I'm trying to picture my son feeling better than I do at 39 as I sit and type this with arthritis in my hips and knees praying it's not the Rheumatoid Arthritis my mother has (which is an autoimmune disorder) that has disfigured her hands.