I just don't know any more...

[smeisnotapirate]

Super discouraged right now.

DS (2yo) just had another screaming attack, and I just don't know what it is. We've gone on elimination diets but they haven't shown anything conclusive except that he's violently reacting to peanuts (shortness of breath, etc). I'm pretty sure he's also battling Candida (I have it bad and we all got thrush a while ago), so I don't know if that's further skewing the results.

Something tonight triggered his reaction (exactly one hour after dinner, screaming and crying for a couple of hours, gas, bloating, drooling, wheezing, and he'll have some horrifically ugly diapers tomorrow). He had eggs, milk, soy, and gluten in the meal. He has food with those things in it every day and this is the first reaction in over a month. Could it be sulfites? His father is allergic to sulfa drugs.

It just feels so random. He got an IgE blood test at 20mo which came up totally negative, even for peanuts. I knew it was a shot in the dark for it to come up with anything.

What do I do? I can't stand to see him in pain any more, and I have no idea what to do except another inconclusive ED.

[mamafish9]

Hugs Sara - hang in there!

Can you give more details on what you had for dinner tonight?

[smeisnotapirate]

Sure - we went out to Boston Market with friends (because I haven't been grocery shopping since the new baby was born ). He had the chicken, "cornbread" (not real cornbread), and baked apples. He also ate ONE of DH's macaroni noodles. They publish their allergy information here.

[kjbrown92]

Have you tried keeping a detailed food journal to see if you can figure it out?

Has he eaten there before?

Does he normally have a lot of salicylates (like in the apple)?

[smeisnotapirate]

Yes, I keep a food log for him. However, I've only been looking for the 8 top allergens.

He has eaten there before. Different meal, though, and no reactions.

I had to look up what a salicylate was, so no. We eat very little processed food, and even less with preservatives. Could he be reacting to that?

[~Charlie's~Angel~]

This might be a really stupid question.....

But since hes two, have you taken him to an allergist to get some bloodwork done? His symptoms would scare the hell out of me. Especially the wheezing. If his breathing is effected in anyway, he should have an epipen.

[smeisnotapirate]

Our FP did a blood test, and wouldn't give us the referral because he tested negative. I agree with you - I was furious. I think it's time for us to pay out of pocket if need be to get him in to an allergist.

[~Charlie's~Angel~]

Dont some allergists NOT require a referral? Might be worth getting a ped if you can find one that supports your other medical decisions (if they are alternative) I find it a little strange that the FP did the testing.

In our case, I informed our ped of the symptoms and our suspicions. She gave me the NAME (not referral) of the allergist she uses, we made an appt, went, THEY gave us the slip to get the blood work done, and we went to a LAB to get it drawn and tested. Thankfuly she didnt do the skin test.

Now my guy is still little, so a couple things that came up posative are quesionable. But milk was a DEFINET, so we have our proof of that.

FYI, depending on the concentration of the milk in the product and how much he ingested, would determine how harshly he reacted. Food for thought.

[smeisnotapirate]

The FP sent us to the hospital to have the blood drawn - sorry I wasn't clear on that. The hospital lab analyzed the results, sent them back to the FP, who told us everything came up negative.

He eats things with milk in them all the time - we eat yogurt and cheese regularly. Never once has he had a reaction like that to them. He doesn't drink milk, though.

[mamafish9]

Find a new FP who will refer you, that's ridiculous.

Salicylates are naturally occurring in foods as well, including most fruits. List here.

And honestly, eating out could have included or been cross-contaminated with almost ANYTHING. Weird stuff sprayed/injected into the chicken, annatto coloring in the noodles...

Here's the ingredients in their "cornbread" (so he got plenty of corn, my DS reacts to that in volume, as a digestive issue):

Cornbread: CORNBREAD MIX (ENRICHED BLEACHED FLOUR [WHEAT FLOUR, FERROUS SULFATE, NIACIN, THIAMIN MONONITRATE, RIBOFLAVIN, FOLIC ACID], SUGAR, ENRICHED YELLOW CORN MEAL [YELLOW CORN MEAL, NIACIN, IRON, THIAMIN MONONITRATE, RIBOFLAVIN, FOLIC ACID], PARTIALLY HYDROGENATED SOYBEAN AND/OR COTTONSEED OIL, YELLOW CORN MEAL, MODIFIED FOOD STARCH, WHEY, MONO- AND DIGLYCERIDES WITH BHT AND CITRIC ACID ADDED AS PRESERVATIVES, EGG YOLKS, EGG WHITES, SALT, SODIUM BICARBONATE, ACIDIC SODIUM ALUMINUM PHOSPHATE, DEXTROSE, MONOCALCIUM PHOSPHATE, XANTHAN GUM, ANNATTO AND TURMERIC [COLORING], Water. Contains: WHEAT, SOY, MILK, EGG.

So again, lots of stuff in there he probably doesn't get all the time - cottonseed oil (peanut x-con?), BHT, annatto...

[kjbrown92]

I would food journal everything, not just top 8, since you can be allergic to any food. With wheezing, I'd want to be sure too. That can get bad in a hurry (my DH has allergy-induced asthma).

[smeisnotapirate]

Ugh, remind me to never eat out again.

[mamafish9]

I'd say it's relatively good news. I'd guess he's reacting to something you don't eat often (like a preservative, or cottonseed oil, or something uncommon in your diet). If he eats eggs, gluten, etc regularly at home without these issues, then probably those aren't the culprits.

Annatto is a natural color, but causes lots of reactions - can you check your mac & cheese, cheese at home (anything yellow/orange) and see if he consumes that at home on a regular basis?

Oh, and question - does he have these reactions at home? Regularly? If so, a detailed food journal would likely identify the culprit, since it isn't happening every day.

[smeisnotapirate]

Originally Posted by kjbrown92

I would food journal everything, not just top 8, since you can be allergic to any food. With wheezing, I'd want to be sure too. That can get bad in a hurry (my DH has allergy-induced asthma).

I do food journal everything, though I've only been paying attention to the top 8 when I'm looking at things. I just don't see any patterns. The last meals he reacted to, he seemed to be reacting to peanuts, maraschino cherries, dried kiwi, mango, pineapple, and papaya (but not the fresh versions, so it's something IN it). He doesn't react to other sulfite-containing foods, though. Every 3rd or 4th apple gets a reaction too.

He's been cranky craving dairy foods and wheat products. I've been looking at the food addiction/food allergy connection - any weight to that?

Yeah, the wheezing scares me. A lot. Especially because we don't have an epi-pen and he's 2yo and barely verbal (so wouldn't be able to tell me until I notice myself).

[smeisnotapirate]

Originally Posted by mamafish9

I'd say it's relatively good news. I'd guess he's reacting to something you don't eat often (like a preservative, or cottonseed oil, or something uncommon in your diet). If he eats eggs, gluten, etc regularly at home without these issues, then probably those aren't the culprits.

Annatto is a natural color, but causes lots of reactions - can you check your mac & cheese, cheese at home (anything yellow/orange) and see if he consumes that at home on a regular basis?

Oh, and question - does he have these reactions at home? Regularly? If so, a detailed food journal would likely identify the culprit, since it isn't happening every day.

I agree - though he does have really explosive behavior at home even. I wonder if that's something even more hidden or if it's just his personality. His behavior seems so hit-or-miss. He usually has his reactions at home, though he has them both out and at home.

I'm beginning to think it's something I haven't been paying attention to - a coloring or preservative or something. I certainly haven't been detailing that much in our food journal - just general meals.

I'll check for annatto.

[changingseasons]

Yes- there is definitely weight to the allergy/craving thing. I have always been addicted to dairy and gluten, and when I cut them (because of DD's allergies) I lost a TON of weight and got rid of some digestive issues that I'd had for years. Then did an IgG test and came up positive for both dairy and gluten.

When you say "not the fresh versions" does that mean you're using a canned fruit or something? If that's the case, you're probably looking at corn derivatives. Is corn something that he eats regularly?

I also agree that you need to see an allergist and get an epipen. RASTs are notorious for being wrong- especially under 2yo. DD's initial RAST showed nothing except a borderline positive for peanuts. Now that she's 32mos, skin testing is really starting to show a lot of positives that had shown negative previously on her RASTs.

[mamafish9]

Ah. Take a very good look at salicylates. Most fruits are high sals, but dried fruit concentrates the sals. That's how I figured out my son was sals sensitive, he ate tones of dried fruit.

And apples are usually a problem for people who react to sals, even though they're only "moderate".

The way salicylates sensitivity works, it's a bucket reaction. So if you've had a low salicylates day, the apple might be fine. If you've had a high sals day, then you get a reaction. Which makes it hugely confusing to figure out! But take a look at your food journal with the moderate-high-very high sals foods list, and see if the pattern of reactions makes more sense.

Also, artificial flavors & colors are processed through the same pathway as salicylates, so they add to the same bucket. (So marachino cherries are a double whammy, high sals fruit + artificial goo).

The good news here:

1) You can figure out pretty quickly if this is the issue, by taking very high/high sals foods out of his diet for a bit (and apples, those are problematic).

2) You can improve his tolerance for sals by supplementing magnesium, molybednum, and B6. Is he still nursing? (If so, you can take the B6 and he will get it, molybdenum & mag you want directly into him. If you are nursing, watch your sals intake as well).

[smeisnotapirate]

Originally Posted by changingseasons

Yes- there is definitely weight to the allergy/craving thing. I have always been addicted to dairy and gluten, and when I cut them (because of DD's allergies) I lost a TON of weight and got rid of some digestive issues that I'd had for years. Then did an IgG test and came up positive for both dairy and gluten.

I crave dairy, and found out that I'm truly lactose intolerant. Very sad. Good to hear that it works - should I be taking gluten and dairy out of DS's diet?

Originally Posted by changingseasons

When you say "not the fresh versions" does that mean you're using a canned fruit or something? If that's the case, you're probably looking at corn derivatives. Is corn something that he eats regularly?

Dried fruit. It was a staple until I cut it out when he was about 18mo. He does eat corn regularly, but I don't see it affecting his behavior or anything.

Originally Posted by changingseasons

I also agree that you need to see an allergist and get an epipen. RASTs are notorious for being wrong- especially under 2yo. DD's initial RAST showed nothing except a borderline positive for peanuts. Now that she's 32mos, skin testing is really starting to show a lot of positives that had shown negative previously on her RASTs.

I know. I was kinda floored when the FP said he couldn't prescribe an epi-pen just because the blood test came up negative.

Originally Posted by mamafish9

Ah. Take a very good look at salicylates. Most fruits are high sals, but dried fruit concentrates the sals. That's how I figured out my son was sals sensitive, he ate tones of dried fruit.

And apples are usually a problem for people who react to sals, even though they're only "moderate".

The way salicylates sensitivity works, it's a bucket reaction. So if you've had a low salicylates day, the apple might be fine. If you've had a high sals day, then you get a reaction. Which makes it hugely confusing to figure out! But take a look at your food journal with the moderate-high-very high sals foods list, and see if the pattern of reactions makes more sense.

Also, artificial flavors & colors are processed through the same pathway as salicylates, so they add to the same bucket. (So marachino cherries are a double whammy, high sals fruit + artificial goo).

The good news here:

1) You can figure out pretty quickly if this is the issue, by taking very high/high sals foods out of his diet for a bit (and apples, those are problematic).

2) You can improve his tolerance for sals by supplementing magnesium, molybednum, and B6. Is he still nursing? (If so, you can take the B6 and he will get it, molybdenum & mag you want directly into him. If you are nursing, watch your sals intake as well).

Ahhhhhh. I can see that "bucket effect" in my food journal now that I look at the reactive days. Wow!! I thought it was just an either/or kind of thing.

I will get him on B6 and whatever that other one is, and I just got epsom salts for his bath water at the grocer yesterday. He is still nursing, so I will watch my intake as well.

Thank you SO much!! Anyone else with ideas, please offer them. You've been so helpful.

[mamafish9]

If you're still nursing, take B6, that will give him plenty (it tastes nasty, so tough to get little ones to take). Molybdenum, you can get drops from nutricology that are fairly tasteless. Mag, the epsom salts may help, oral mag is all that worked for us. It can be tricky to get into little ones too, so try the baths first, but then try oral mag if you don't see changes.

And in my experience, DS was very reactive to me eating sals - so track your intake as well, it can also fill his bucket.