How seriously should I take IgG RAST results?

[violinear1]

My son who is 15 months, and 20lbs (still not walking) has not gained any weight in over 6 months.

His IgG results were back last week (still waiting on IgE)

and he had 20+ level 3 reactions to things that we frequently eat, things that I thought were safe.

None of his known *hives causers* showed up on IgG. (milk/eggs)

So all the results are basically my grocery list and most are from pretty diverses food families. And there are things that didn't react and did within the same family. Olive, almond, grapes, coconut, oranges, avocado, asparagus, watermelon, cantaloupe, lemon, garlic, broccoli, cauliflower, oats, peas.

Also soy & safflower & sesame & cashew & tomato & walnut (but we get very very little of these) they are things we eat all the time and don't show any reaction...  

So I am getting serious here, and starting a food rotation which I also intend to follow strictly. But there are only about 30 foods that I feel we can have based on these results. Am I going to further contribute to his weight loss? Is this a bad idea? Could the delayed reactions be causing him to not gain weight?

How long should I plan to stay off the offenders until trying to add them back?

Here's a little background if that's helpful...

He's a very happy child, sleeps well, was never sick even once until 12 months when he got his first ear infection, then was on antibiotics 4 times in 2 months.

At 1 month, I noticed a rash when I ate eggs for the first time, and he had frequently green, mucousy stool occassionally with a tinge of blood so I cut out all dairy/eggs from my diet. He was also had small hives on his chest/stomach pretty much constantly. 

I reintroduced dairy/eggs to my diet at 6 months with no immediate effect to his stool.

7 Months, after reading about Baby Led weanging, I wildly introduced an insane variety of fruit, vegetables and occasionally bread which he mostly gummed happily. He had a few purees at daycare, but mostly breastmilk. Stayed away from milk/eggs though!

8-9 months I decided to back off the food some, and focused on nursing more because he was drinking less breastmilk at daycare and I felt that it was more of a nutritionally sound thing for him to get calories. If you had to pick a jar of carrot over a bottle of breastmilk?

At 13 months I added meat and completely to cut out all gluten from his diet, and possibly some hidden dairy in that. He had been having constipation/diarrhea and his skin wasn't very lusterous .. so it's been over 2 mo gf and the no weight gain....(Although he could be getting everything through my breastmilk)

He went from a constant 25% to 50% (though not yet crawling) at 9  months. At 12 months (very active crawling) back down to 25% and now at 15 months I'm not sure what he is, the doctor didn't want to depress me anymore. He has gotten taller though.

Between 6-12 months he has had 6-7 instances of hives. Several from exposure to cats/dogs, once from a soap at daycare, once he grabbed some macaroni with food coloring and touched his mouth with it, once when someone let him lick a popsicle with food coloring/milk before he'd even had any food, once I touched his cheek with egg, on his birthday he was given a piece of cake of eggs/butter/wheat, and once they were really really bad with red splotches and swelling from an unknown prompt at daycare-- I speculate that he was given a kid's formula instead of my breastmilk. And yesterday he BIT our soap when I was washing his hands with water, and his lips swelled up. The soap, although natural contained milk and who knows what else.

The ENT was CLUELESS about interpreting the RAST, he didn't know the difference between IgG and IgE. . So I am trying to locate an ENT or healer who is more knowledgable. But in the meantime, if anyone with experience can help. I would appreciate it!!

[violinear1]

Oh and he's taking daily Probiotics (culturelle) for about a month now. Also started giving him Kombucha.

[scsigrl]

Didn't have time to read it all (getting dinner ready)

but in a quick skin:

I believe culterelle has dairy in it (cultured on it?)  Something you may want to look at.

I am of the "If you haven't seen a reaction" to the food, DON'T PULL IT!  Testing is very inaccurate at best, esp. under 2 years old.

Will try to get back to this later.

[sbgrace]

I wouldn't pull stuff I'd not seen a reaction to in a child with known (obvious) IGE reactions to egg and dairy personally based on your IGG results. I do think, especially should you decide to pull those, you need to track his diet (total calories and protein as well as ratios of fats/protein/carbs). If you do a rotation diet you should (well, we could) be able to track if you've got a reaction to something anyway. It sometimes takes time to narrow down "what" but a rotation did help me solve the puzzle with a GI only/delayed reaction here. I guess my instinct based on my experience, that you can get tons of false positives in even IGE allergy testing, and that you didn't suspect those varied foods is to only pull something when you see a reaction. The rotation diet should help you see if there is something delayed you're missing.

Why is the doctor not telling you the percent? I don't understand that..is it that the doctor is not concerned and so doesn't want you to be either? If he/she is concerned I can't understand not telling you. If he/she isn't I guess I get the logic but I wouldn't be able to stand a doctor like that!! You have every right to know that number. Kids slim out as they get active so the bump up and then back down to his curve isn't concerning to me. He's growing in height then you might see a drop in weight as the calories go to a height spurt. If he's tracking his curve over-all that's good.

Fifteen months and not walking is well within normal gross motor wise (I assume you know that but in case!) so no worries there if he's been hitting his milestones on time.

Is it dairy free culturelle?

Why and when did you pull gluten? I'd be careful. Gluten free often has heavy tree nut or sesame cross contamination and you've got an allergic child. I learned that the hard way (now I've got a nut and sesame anaphylactic child). If you need gluten free I can give you a list of gluten and nut safe choices. But you'll need to order online likely. Most stuff you find everywhere is cross contaminated--including premade (breads, crackers, cereals, etc.), flours for baking and etc.

[violinear1]

Culturelle is dairy & gluten free. Believe me, I checked.

Based on a recommendation for oils, I was told to try ghee, I tested his skin with it last night and no reaction. So maybe it's specifically lactose or casein proteins (ghee is free of those) that don't agree with him? Dairy also didn't seem to be affecting him coming through my breastmilk after he was 6 months.

No, the doctor is definitely concerned about the weight. She suggested that I push calories in liquid form, doing smoothies, juice (he had only had juice a few times) etc. She wants to wait for the allergy results to come in, and then test thyroid, iron levels etc.

I don't know why for sure she didn't tell me the percentile. I didn't actually ask, it was his first visit with her so we were covering a lot. His previous doctor was didn't seem concerned enough about the weight and that was why I switched. We have a follow up in 2 weeks, so I will ask the percentile then. I think she was trying to spare me more bad news because he also has a heart defect, and she just pointed out that he has undescended testicles (something which I never knew to look for, and his doctor that he had seen up to 15 months never pointed out).

Well I've already found 1 thing (it wasn't tested) just rotating for less than a week. Mango, which caused weird white bumps all over his pelvis.

I am defintitely concerned about the rotation providing enough nutrients. I am waiting for the name of a nutritionist that will see us at no cost(!) from the not very knowledgeable ENT's office.

So do you think rotating the high blood test reaction (but no obvious to me reaction) is the best idea? I would love that because I don't know how I can live without olive & coconut oil. He doesn't want to live in a world without grapes either. But we can definitely live in a world with these things once every 5th day.

I pulled gluten at a chiropractor's suggestion. His diarrhea/contipation and pretty regular after meal throat scratching stopped. Most of the GF "replacements" are brown rice based. Some have a wee bit of corn/soy, but I don't use them all that much. I am mostly sticking to quinoa, millet, and white rice. Although I hear that quinoa can be problematic for the highly allergic.

He's growing in height then you might see a drop in weight as the calories go to a height spurt. 

He is definitely gaining in height. No one has yet to mention growth spurt as a possibility. When I got home and looked at my records, I noticed that they measured his height wrong (the nurse did it really fast, and only drew a line at the top of his head, bottom of his feet and measured that) at the 15 month appointment. It was less than what it was at the 12 month. But like I said we switched doctors. So this would affect his curve. His father and half brothers are also very lean.

It's just a dramatic change from what he was at 9 months (before he crawled) He was so tubby he couldn't fit his thighs in a bumbo seat, and I had to stop using our Large sized cloth diapers because I couldn't close the elastic. And then at 12 months I looked down and it was like he had wasted away.

Maybe this is all due to a growth spurt. (hoefully!) But even if I can't see any demonstrable effect of the high IgG prompting foods, could lots of histamine reactions be causing malabsorbtion??

[sbgrace]

Ok. That gives me a clearer picture.

Some thoughts:

IGG isn't histamine related at all. This isn't like your IGE/histamine/immediate food allergy reactions. If you read up on IGG you'll see it's controversial (ie the studies I've seen find that results in one test often can't be replicated in the next for example). Certainly you can get false positives. I'd be leery of pulling stuff without any reaction for sure. Hopefully rotation would help you figure that out. As far as what to put on the rotation--if you have seen a reaction don't put the food in for sure. If you just have a positive on the test but haven't ever seen reaction I'd put it in but maybe one of those at a time perhaps so that you can narrow down if you do get reaction. So baseline--things are great for a couple of rotations--add in x that tested high one day for a rotation or two--if no change x is ok or at least that's how I would do it.

My son had surgery at 18 months for an undescended testicle. His doctor had also missed it (his was partially descended). They do want to do the surgery early (before 24 months for sure) because they know cellular changes occur even that young now. Did they refer you to urology? It's a quick surgery but do make sure you get in soon given his age is my advice. You're absorbing a lot and that has to be stressful and I'm sorry for that. I've been there and it's a really hard place to be. I can sense stress or maybe I'm projecting my feelings from our history to your posts! But hugs to you. I know it's hard.

My son reacted to Mango (hives). The thing about mango is it is cross reactive with sesame and tree nut (specifically cashew and pistachio) proteins. It's a bad one as those are all very serious allergens. I don't want to stress you more but given what you've described to me about his individual and family allergy history and what I experienced with my son and gluten free I'm going to suggest you take the step to do tree nut and sesame free gluten free. Here is the thing--staples are also cross contaminated in packaging. I couldn't, for example, find a safe millet under 25 pounds shipped directly from the manufacturer. All coconut products/coconut oil is tree nut cross contaminated except Tropical Traditions. I called every single coconut oil manufacturer. None of the rest are safe from tree nuts. So that's why I'm concerned reading your post.

[violinear1]

So it's safe to say that the bulk rice/millet that I use is probably cross contaminated... is it still an issue if you rotate? I was definitely going to stop using gf waffles/bars altogether. I am in the process of setting up a 4 day rotation, so far I feel pretty great doing it with him, and oddly I am producing a little more milk than I had been while I pump at work.

You mentioned a good online source for foods that aren't cross contamintaed?

I am going to try and test the things that the RAST IgG suggested he has an intolerance to. It won't hurt to pull them for a few rotations.. and then I can add them back 1-2 at a time and try and see if I notice any problems.. Still definitely going to see a nutritionist to double check my setup.  

I'm not 100% on the mango, I recently switched to 7th generation diapers and they might be the culprit. Might try it again in a week.

The new doctor is going to wait until our next visit to "check again" before referring to urology. I think that he may have the retracting type, his "sac" shrivels up like a tiny walnut whenever we are in the office because it's cold without any clothes on... But I have only ever found one teste when I have checked myself.

Oh yeah, I'm stressed. I even dream about food allergies! Too many issues and very little support. Ready to have more pieces in the puzzle.

[violinear1]

So I just got his IgE results (finally!), and they were level 2 for Eggs and Peanuts.

So the no traces of nut sources would be appreciated.

The allergist suggested that being exposed to those 2 repeatedly (through breastmilk?, eggs a few times in baked goods) would be what caused so many foods to show up on the IgG.

[sbgrace]

I'm glad he wasn't positive for tree nuts!

Most of the cross is tree rather than peanuts I believe. Here is the situation--my son is tree nut and sesame. When I called I asked about those and not peanut. That said, I wouldn't expect peanut on lines that were tree nut free. In fact, to have something gluten free be tree nut free it seemed like it had to be either a company that only produces a specific product (say buckwheat company or teff company I list) or a company that specializes in all allergen free (like Enjoy Life). So I think my stuff is very likely safe for your son. Still, you'll want to call the company and ask about peanut (and egg I guess if it might apply). My question was is it produced with or on shared equipment with x or x?

Here is a thread where I posted my list of gluten free stuff that is tree nut and sesame safe: http://www.mothering.com/community/forum/thread/1251499/bob-s-red-mill-gf-and-nut-cc

Did you get an epi pen 2 pack for the positive peanut?

I know you're stressed but I really think you're on the right track. You got testing, you're setting up a rotation, you've got what sounds like a good doctor now....it will work out!

[violinear1]

I asked about an epi pen, and they are getting back with me, the doctor was out and hadn't seen the results yet.

Eggs and peanuts were both low reactions, but I hear that it can go from 0 to 10. So I'm not messing around.

They did not test for an IgE response to tree nuts so I don't know about them. They were tested for an IgG response. Cashew & walnut were level 3, almond level 2 (his dad who does raw, HAD been giving him almonds that he grinds (although I specifically said not to) when he visits him which may explain why he is always scratches himself after seeing dad. Sesame was also 3 on the RAST, and had the highest response of any of them.

So I think it best to avoid tree nuts, sesame and their families altogether even when I rotate things back in and find a more specific RAST test again later on.

But peanuts didn't show any response on the IgG is that strange?

I am not sure that I need to do gluten free now, wheat/gluten didn't come up even a little on the IgG or IgE. I am thinking that the baked goods, bread and crackers that I gave him earlier on may have contained eggs/nuts and that may have been what caused the diarrhea/hives. So if I'm careful I can bake at home.

sbcGrace, Thanks so much for your concern! The thread is very helpful. I will still do rice/buckwheat even when I "try" wheat. Not teff though, I worked at an Ethiopian restaurant in college and can't stand the stuff now. Knowing really is half the battle. I feel a huge sense of relief

[scsigrl]

Something to keep in mind is that the numbers (level 2 or whatever) mean nothing.  There are kids who had really high numbers and get a tummy ache with exposure. There are kids who have really low level and have ana reactions to even trace amounts.  So getting a + (which is still may not be 100% accurate) is + no matter the numbers.

Yes, if the Dr. isn't willing to give you an epi pen, you need a new Dr.

If you are GF, I do have a long list of tree nut/peanut free flours if you are interested.

[violinear1]

Wheat didn't show up on either test so I may have been seeing reactions from baked in/contact eggs/peanuts and thinking it was wheat.

I have always used a lot of alternative grains, and now especially with rotating I will need as many different foods as possible. 

scsigrl, I would love your list because we will need to avoid peanuts/tree nuts regardless...

[scsigrl]

This list was put together in July of 2010.  Please double check if you do decide to work with some of these companies!

SAFE

Briskett Mills- Buckwheat- http://thebirkettmills.com/

*Our Buckwheat products are gluten and wheat free.  They are milled in a dedicated facility.  Please visit our website www.thebirkettmills.com to learn more about our products.

The Teff Company- (Teff)- http://www.teffco.com/index.html

*We are highly specialized, not really a mill in the normal sense. We only work with teff.  Therefore there is no chance of crossover with any of the things you mention.  Suitability of teff for you particularly is not  automatic however, and you should try it to see how it affects you.

Sincerely Wayne Carlson

Twin Valley Mills- (sorghum only)  http://www.twinvalleymills.com/

*We grow all the grain here on our farm and mill only sorghum.

Amazing Grains- (blend Indian rice grass only)  http://www.amazinggrains.com/

*Hello,

The ONLY seed that is milled in our facility is Indian rice grass.

So, NO, none of the 8 allergens are process or packed in our building.

NOTHING else, just the Montina, white & brown rice flour, and tapioca

Totally GLUTEN FREE...

Hope this helps, happy trails~

                 To your health,

                      Grace

King Auther- https://www.kingarthurflour.com/shop/landing.jsp?go=Home

Thank you for your inquiry.  Our signature flours, the flours sold in

The open retail markets, are all free lined flours, with no allergens.

The specialty flours from our catalogue, to include the pastry, Italian,

French, and others, are re-packaged here at our facility, where other

wheat products are made.  These are not on a free line.  Feel safe that

the King Arthur Flour you buy in your local grocery store is clear.

Our new Gluten Free line of products are all certified as Gluten Free,

as well as allergen free.  We have worked with the Celiac Association in

regards to our product line, and we are 100% free.

Please contact us again if you have further questions.

Sincerely,

carol colby |Customer care king arthur flour | 800.827.6836

Authentic Foods-  http://authenticfoods.com/

            Nut Statement

   All of our products are free of nuts except for Almond Meal and Pie Crust Mix. Our Almonds are milled outside of our facility and is stored on its own pallet. Almond meal will only go into production when there are no other baking mixes or flours being produced. When completed, the production room is then cleaned to its entirety to not allow contamination with our other products.   This allows all of our other products to be free of nuts completely.

Steven Rice President Authentic Foods

Unsafe

Bob’s Red Mill-

Thank you for your email.  We are mindful of the concerns of the allergen-sensitive community and we utilize "Good Manufacturing Practices" to diminish any risk of allergen cross-contact. We segregate our ingredients and thoroughly clean our equipment between production runs with high powered air pressure. Also, the first 30 lbs of product run on any line is purged.

It is Bob's Red Mill's policy and practice to apply elective allergen advisory statements to all Bob's Red Mill product labels.

Gluten Free products bear the following statement:

             "Manufactured in a facility that also uses tree nuts and soy."

All other (non gluten free) products bear the following statement:

 "Manufactured in a facility that also uses tree nuts, soy, wheat, eggs, and milk."

Any labels seen without an allergy advisory statement were produced prior to our recent implementation of this practice. Our labels will be replaced with the newer version as soon as existing stock runs out.

Please let me know if you have any further questions.  Thank you!

Lea

Customer Service

Bob's Red Mill Natural Foods

Aarowhead Mills (Haine)-  Also, per people on line, there have been a ton of people who react to these flours.

Thank you for taking the time to contact us regarding our Arrowhead Mills Flours. We strive to maintain the highest quality products and appreciate your patronage.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.

Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.

If a product contains gluten (ie. wheat, oats, barley, etc...) as a major component, we will include it in the ingredient list. For consumers concerned about the presence of trace amounts of gluten, we suggest avoiding products that include natural flavors or spices.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please f            eel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Sincerely,

Christina
Consumer Relations Representative

Unknown

Bouchard Family Farm-http://www.ployes.com/index.html  Buckwheat (sent email)

Lundberg Family-Rice http://www.lundberg.com/products/products_home.aspx (sent email)

Nutriva- Coconut Oil- http://nutiva.com/ (sent email)

Hello,

[violinear1]

Awesome! Thanks so much, he had some lip swelling the other weekend, I'm pretty sure from sunflower seed oil (may contain traces of nuts) which I was using in lieu of coconut. Of course, that was before I had the diagnosis of peanut allergy.

This will save me some leg work.