I can't figure out what dd is reacting to :(

[bigknitwit]

If anyone has any advice, I would love to hear it! My dd wil be 2 in December. She has been gluten free since birth since her older brother is celiac. She has had chronic eczema around her mouth for several months - probably 6-7 months. Prior to the eczema, she was really scratchy on her tummy.

In May, I had intradermal allergy testing done on her and found the following positives:

peanut
milk
beef
strawberry
cane sugar
cashew

We removed everything except sugar back in May, and her skin greatly improved. No more scratching, reduced rash around the mouth. Everytime she had an accidental exposure to dairy, the rash would get more enflamed around the mouth, and then a day or two later she'd start with the tummy scratching.

A few months back, we found the rash was not improving around her mouth, and was getting worse. I removed eggs for ten days, and then made her a pudding with coconut milk, egg yolk, maple syrup, vanilla, cinnamon and corn starch. She loved it and lifted up the bowl to drink it. Everywhere the pudding touched within 15 minutes was red - all over her mouth, cheeks, chin, and even on her tummy where it dripped. She has eaten all of those foods without incident, but we removed egg at this point.

dh wanted me to take her to a traditional allergist, so I did, and he did skin prick testing. She came out positive to potato (this wasnt' tested in the intradermal testing).

Then last week she was eating sunflower seeds (roasted in cottonseed oil), and her face started to get inflamed more than the usual. So no more sunflower or cottonseed anything.

But her face is still not clear, and she is still scratching somewhat. So now I've removed cane sugar.

We are running out of foods to eat. What else could be going on here? I haven't removed corn or soy, but she tested negative to both of them. She doesn't eat any soy at this point, but she does still eat corn.

So now, here is the total list of foods we avoid (she's nursing, so me too)

gluten
all nuts and peanuts
milk
eggs
beef
all berries
cane sugar
potato
sunflower
cottonseed

I feel like I am losing my mind. All I can think about is what foods to remove next, is she reacting to something I'm feeding her, etc, etc. I am so frustrated! I bought her a probiotic (Janes - which is great and she loves it but it's flavored with blackcurrent flavor and I'm worried she's reacting to it).

She's also reacted to bactroban (I used to put it around her mouth occasionally to hold back any developping infection), and she reacted to the adhesive used to tape her milk and soy delayed reaction allergy tests to her back. The whole area where the adhesive was attached blew up in red, irritated skin 12 hours after I removed the tape.

[fruitfulmomma]

Have you looked into salicylic acid? My daughter can't tolerate them. It isn't a true allergy though so it doesn't show up on testing. Both corn and coconut are high in sals. Here is a info site -http://salicylatesensitivity.com/about/food-guide/.

She has a true latex-allergy and reacts immediately if it touches her skin, but not life-threatening apparently. She also reacts badly to latex cross-reactive (bananas, avocados, etc), but tested negative on the allergy testing for them.

We are also gf. It can be maddening sometimes. I think I need to remove potatoes and rice out of my own diet, but then I feel like I am left with no cheap filler foods at all.

Does she do okay on other meats like chicken or lamb? I am thinking that maybe if you went down to a basic diet and then added back in over time, it might be easier than removing one thing at a time. Could you do maybe chicken, rice, pears, and peas to start with? Not sure about fats though, we can do dairy so we eat a lot of butter and cheese around here. If it is a sals issue, a lot of the oils are high in it. Hopefully some of the other more experienced mommas will chime in.

[mama.monika]

I remember that feeling I thought I would go crazy!

Okay DD1 has eczema so this time we are trying to be super careful. DD2 is being introduced to foods 1 at a time. Have you tried her with plain oatmeal porridge?
By the way my daughter reacts to different oils that foods are cooked in so it may not have been the actuall sunflower seeds.

I recommend going back to basics with her.xxx

[mamafish9]

Second vote for salicylates sensitivity. Many of the foods she are reacting to are high in saliyclates - berries, sunflower seeds (also high in omega 6s, which seem to make sals sensitivity worse). In the coconut milk pudding she reacted to, coconut milk, and cinnamon are both high sals.

The deal with sals sensitivity is that it is a bucket reaction, very different from an IgE (typical allergy). It means a little cinnamon might be OK, but a lot would be an issue - or a little might be an issue if she had sunflower seeds earlier in the day.

The good news is, sals sensitivity, particularly one that seems to be getting worse, can often be caused by nutrient deficiencies. The three required by the pathway that processes salicylates are magnesium, molybdenum, and P5P (the active form of B6). P5P passes through breastmilk well, so if you take extra, she should get enough. Nutricology makes molybdenum drops that are virtually tasteless (and may also help with eggs - eggs are high sulfur, and sometimes people start reacting to the sulfur when they are low in molybdenum). For magnesium, get some mag glycinate (great, but tastes bleck) or mag citrate (tastes less bad) and get as much into her as you can - like 250-300mg over the day would be great. Try Epsom salts baths as well, 2c water in a warm bath for 20 minutes.

In the meantime, try taking all high sals foods (there is a food guide in the PP link), from both of your diets, and see if that helps. After a week or two on the supps, you may find her tolerance increases.

[kjbrown92]

The tape reaction could be latex, but it can also be the adhesive, which is corn-based a lot of the time, just to keep that in mind. Think of all the things that you can eat (instead of focusing on what you can't). It just makes things a little easier. Think of all the veggies and fruits that you can eat, all the different kinds of meats besides beef, etc. Then start rotating around. And keep a food diary, and hopefully you'll find out the other culprit (if it's not sals, since you've already been given advice on that one).

[bigknitwit]

Thanks everyone.

I am thinking of doing a total elimination diet with her (and me). I would want the foods we eat to be salicylates friendly, and low allergen likely. I am thinking of turkey, rice, squash, and (peeled) pears. Would these work? Lamb would probably be better but neither of us like it very much. I am a little nervous about the turkey because she eats chicken all the time, and I'm wondering if that could be her problem. Turkey is another kind of poultry so maybe I shoulod just suck it up and eat the lamb... I feel bad for dd though. Could we do sweet potatoes instead of squash, or is squash the better choice?

the other issue is the supplements she and I take. I give her vitamin D drops which are in fractionated coconut oil. I take vitamin D, a calcium/magnesium/K supplement, thyroid replacement, cortisol, zoloft, phosphatidyl serine, and fermented CLO. I would also like to take the magnesium, molybdenum, and P5P like mamafish9 recommended. Can I take these while doing the elimination diet? I must take the thyroid hormone, and the cortisol, the rest is not absolutely necessary, although I worry about my own reserves since I've been on a restricted diet for so long, and I'm sure I have deficiencies of my own. Also without the zoloft I become an insomniac which is really, really difficult to deal with.

So, are the food choices reasonable? What do I do about the meds and supplements?

[fruitfulmomma]

Could we do sweet potatoes instead of squash, or is squash the better choice?

I wouldn't do either. Sweet potatoes are high in sals and zucchini is high and pumpkins are moderate, so I am guessing other forms of squash are going to be in these ranges too.

If you look at the site I linked to above it has a food guide which shows the levels in different foods. Some children still react to some lower level foods and do okay with very small amounts of the higher stuff, but it is a good starting point. We do peas, white potatoes, onions, garlic, green beans, asparagus, celery, Brussels sprouts, chickpeas, cabbage, and iceberg lettuce.

[mamafish9]

Originally Posted by bigknitwit

Thanks everyone.

I am thinking of doing a total elimination diet with her (and me). I would want the foods we eat to be salicylates friendly, and low allergen likely. I am thinking of turkey, rice, squash, and (peeled) pears. Would these work? Lamb would probably be better but neither of us like it very much. I am a little nervous about the turkey because she eats chicken all the time, and I'm wondering if that could be her problem. Turkey is another kind of poultry so maybe I shoulod just suck it up and eat the lamb... I feel bad for dd though. Could we do sweet potatoes instead of squash, or is squash the better choice?

the other issue is the supplements she and I take. I give her vitamin D drops which are in fractionated coconut oil. I take vitamin D, a calcium/magnesium/K supplement, thyroid replacement, cortisol, zoloft, phosphatidyl serine, and fermented CLO. I would also like to take the magnesium, molybdenum, and P5P like mamafish9 recommended. Can I take these while doing the elimination diet? I must take the thyroid hormone, and the cortisol, the rest is not absolutely necessary, although I worry about my own reserves since I've been on a restricted diet for so long, and I'm sure I have deficiencies of my own. Also without the zoloft I become an insomniac which is really, really difficult to deal with.

So, are the food choices reasonable? What do I do about the meds and supplements?

Don't do an ED and low sals - trust me on that . I was on an ED when I figured out my son was extremely sals sensitive. No filling veggie is low sals, and fat is a problem as well (you need a fat source on an ED and you need to eat LOTS of it). Fats are either high sals or high omega 6s (which in our experience make sals sensitivity worse).

I'd do the low sals week first, so you can figure out if that is a piece - and add in the three supps for that (mag and mo for both of you, P5P for you). If it is a piece, keep your sals moderate, and take out corn & soy. I know you said your DD isn't eating soy, but the phosphatidyl serine you're taking is most likely soy, so you'd want to pull that one. What are the inactive ingredients in your zoloft? Don't worry about the vite D drops - unless she reacts to coconut, that's a small enough amount that sals shouldn't be a big problem.

[bigknitwit]

What about the fat from lamb? Would it be considered low sal? I can buy grassfed lamb. I was thinking I would eat turkey, lamb, asparagus, rice, peas, and pears and see if I can clear her face up.

The phosphatidyl-serine does have soy in it so that one is out for the next little while. I also take iodoral. The ingredients in the zoloft are: di basic calcium phosphate dihydrate, fdnc blue #2 aluminum lake, hydroxy propyl cellulose, hydromellose magnesium stearate, microcyrstaline cellulose, poly ethylene glycol, poly sorbate 80 sodium starch glycolate, titanium dioxide.

[mamafish9]

Yeah, lamb fat would work. Sounds like a good list, give it a go. Don't do it for more than a week though.

Your zoloft has starch (corn) and several other things that are probably corn.

[bigknitwit]

Allright, so maybe I ask to get a compounded zoloft to remove the corn.

I am roasting a turkey (kosher so nothing injected) right now. I went to the store this morning and boughts lots of peas, asparagus, rice, and pears. DD is eating a pear right now.

There's no reason why I can't consume turkey bone broth, right? How about rice pasta (made with brown rice and water)? Her face is worse than ever so I am especially inspired. Last night she ate a cranberry blueberry sauce and I think it's causing her face today's inflammation. This would point to sal intolerance, I think...

Thanks again all for being so helpful and knowledgeable. I will go to the store tomorrow to look for the supplements I need.

[kjbrown92]

I'm getting my thyroid med compounded. I think a lot of meds CAN be compounded, if you can find a compounding pharmacy.

Bone broth should be fine. My DS can't have chicken, but can have turkey, so they're not as closely related as one would think.

[mamafish9]

Both rice pasta and turkey bone broth should be fine foods wise - my DS reacts to bone broth in general (really high in glutamates) - so you might wait a few days before trying that one.

[bigknitwit]

We are on day four of the extreme elimination diet. Aside from the fact that my lack of food choices is driving me crazy, I think dd is getting better

Here is her picture the day we started the diet (she just woke from her nap):
http://www.flickr.com/photos/55107573@N08/5105085204/

Here is her picture 3 days into the diet (yesterday):
http://www.flickr.com/photos/55107573@N08/5104490095/

The flash really accentuates the redness around her mouth. In reality, her face isn't as red as the pictures show. However, the flash is helpful at really figuring out where the inflammation is!

What should be my first food to add in to trial (low sal and low allergenic)? Is palm shortening an option? I need a good fat...

Maybe there is light at the end of the tunnel with all of this. Thank you all for your advice and directions!

[425lisamarie]

I didn't want to believe it, but DD cannot have any coconut products. I just don't use them at all anymore. She doesn't have an actual testable allergy to anything, but gets exzema from corn, strawberries, cucumbers, eggs, coconut and ANY preservative. I bought cheaper soy sauce and she got a rash on her arms and a small patch on her chin right away. I've been a bit more laxed about sometimes buying a roasted chicken premade. I guess no more.

We basically rid the eczema entirely and she can have a small bit of egg. Strangely we are not sensitive to gluten or soy or dairy. The biggest thing she reacts to sadly are the "health food isle" type things LOL. Any "natural" lotions, creams, and we cannot do any type of seed, not even flax or chia seeds.

What about olive oil? Or ghee?

[mamafish9]

Palm & coconut are different - I'd try adding palm, a good fat is really important.

[bigknitwit]

Here is her picture today - day 4 we are on the mend, right? I think so... I am spending wayy too much time analyzing these pictures - at least it's getting my mind off my limited diet

http://www.flickr.com/photos/5510757...n/photostream/

[amyjeans]

oh my she is so cute! Cinnamon probably is the culprit. My kids get red like that if it touches their skin, even if mixed into tomething.
We did the Feingold diet to learn about salycilates- and dumping them made a WORLD of difference!

try eliminating it for 2-3 days, then giving her just a bit, and see what happens. (unless it is painful to her!)

hth

[JaneS]

Palm shortening (we use 365 or Spectrum brand, both organic) is very low sal, it is also a great skin cream! (use over damp skin)

Olive oil is high in sals.

The blue food coloring in your med also could be a big factor... food colorings and preservatives are crazy high in sals.

Broths are high in amines, a different issue, but common to food chemical intolerance people:
http://failsafediet.wordpress.com/

The Pharmax capsules do not have flavor added, just the powders.

[ASusan]

The pictures are a GREAT idea. Keep doing them. SO important to keep track of progress (and, although hopefully not, failures/reactions).