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Overwhelmed by allergy test results!


Betty04
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I just received the results mailed from Alletess of the IGg testing and here are the foods my 3 year old tested positive for:

 

+3 for:

 

Barley

Cashews

Coconut

Corn

Egg White

Egg Yolk

Garlic

Gluten

Malt

Oat

Pea

Peanut

Rye

Sesame

Soybean

Walnuts

Wheat

 

+2 for:

 

Milk

Rice

Lima Beans

Safflower

Watermelon

 

Can he really be allergic to all these foods? How can I cut out all these things and he still get good nutrition?

 

I have a follow-up appt in 2 weeks with the DAN doctor to review these results and a call into my regular ped b/c other blood work that was taken that day is abnormal ( High BUN/Creatinine ratio; Low Globulin; Low Cholesterol; Low IgG Serum, and intedeterminate Lyme IGg Western Blot)?

 

Any thoughts would be greatly appreciated! Thanks, Betty

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Hello,

Sorry I cannot offer any advice. (not familiar with any of the results) i am though writing to ask how they preformed the tests that got you the results to begin with. What did they do?? Thanks in advance

 

Hi,

 

It was all blood work except for a urine sample that I am still waiting on the results (not for allergiers though).

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Betty,

 

I got mine back too. 16 items. Four were high: gliadin, wheat gluten, lemon, pineapple. Five were moderate, among which were peanuts and eggs. Seven were low, among which were oats, oranges and yogurt.

 

I looked at your list and it is extenive. I am really not the person to address this because I am new to it. But I have been told that when the gut problems are addressed, many of the sensitivities are reduced or negated. Things that are a problem now, won't always be. I think you will probably be asked to remove all major offenders and use a rotation diet for the others.

 

My son's doctor suspected dysbiosis (gut problems), so I would assume that your profile is similar.

 

Also, again I don't know much about your test results, but I did look up the bun/creatinine ratio, and I would try not to worry too much about that while you are waiting to see the doctor. I noticed from your earlier posts that the little guy was fighting a virus at the time the test was performed. That may have thrown off his ratio.

 

Tami

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Hi Betty,

I'm sure your head is spinning right now. I tried to organize your allergen list by food type.

 

I just received the results mailed from Alletess of the IGg testing and here are the foods my 3 year old tested positive for:

 

  • Barley
  • Gluten
  • Malt
  • Oat
  • Rye
  • Wheat

These are all omitted when you go gluten free, so this long list isn't so daunting when you look at it that way.

  • Rice
  • Corn
  • Soy

These are a little tricky as they are found in most gluten free products. (But not all!)

 

As a substitute for your typical grains you should look at:


  • Buckwheat
  • Quinoa
  • Sorghum
  • Arrowroot Starch
  • Potato Starch
  • Millet
  • Montina
  • Tapioca Flour/Starch
  • Also check out Garfava Flour from Bob's Red Mill, I think it would suit your needs

  • Cashews
  • Walnuts
  • Peanut
  • Coconut

Judging from this list I would run from any and all nuts.

 

  • Garlic
  • Safflower
  • Watermelon

Okay, Now this ain't bad! Sky is the limit here: Carrots, Potatoes, Onions, Asparagus, Spinach, Lettuce, Apples, Oranges, Tomatoes, Bananas, Green Beans, Cabbage, Broccoli, Blueberries, Strawberries, Peaches, Nectarines, Pears, Plums.... There is a mess of stuff he can have in the fresh fruit and veggie category. Many are not as fortunate as you.

  • Pea
  • Lima Beans

Okay, who cares about the lima beans. What kid likes those anyway? But you can have navy beans, pinto beans, northern beans, black beans, garbanzo bean,..... Legumes are a great source of nutrition, too.

  • Egg White
  • Egg Yolk

Okay, this is a problem when you bake, but not impossible to eliminate: You could use flax seed meal instead or use applesauce, etc... There are plenty of egg free formulas available out there. Best tip I have come across yet is to buy donut pans and bake using those so there is no 'sink factor' going on. Make bagels, cupcakes, whatever......

  • Milk

Okay, here I really don't see a substitute milk for you as the rice, oat, soy, and almond seem like a bad idea. Just use water or juice, but with the corn issue it has to be a juice without citric acid from the refrigerator section of your grocer. Oil is a good substitute for fat content in baking.

 

Also, meats are good, including all fish. Smile about this one. It could be a nightmare for you if you had to cut out beef or pork or something, too.

 

Betty,

You can do this. You only need to stick to the diet for three months, and then you can reintroduce the allergens on the lower scale in rotation. I personally would not reintroduce the nuts and the gluten. Possibly not the milk either for at least 6 months. You may have luck with rice milk in a shorter frame of time.

 

I will tell you that we had 17 food allergens and we stuck to the elimination diet like it was a religion. We reintroduced the lower allergens one at a time at the 3 month mark. We introduced the medium allergens at the sixth month mark. We could not reintroduce the wheat and the corn, but by that time we were so used to doing what we were doing that is wasn't a big deal anymore. Keep your chin up. You can do this. Have a good cry and a glass of wine then roll up your sleeves and clean out those kitchen cabinets.

 

In six months you will have a different child. The tic disorder didn't happen overnight. It took many months, years, for the body's immune system to get so broken. It will take many months to heal it. I suspect the gluten is a major factor and that once the antibody levels go down you will be able to reintroduce the lesser allergies with ease. We had an egg yolk allergy and now he can eat them with ease, although he is not an egg eater after six months without them. But he eats them in baked goods without a bother.

Check out my blog to learn about the wheat and corn combo. I do not use much soy, almost none, and I always mention when I do. I will use a lot of rice in my baked recipes, but there are bread mixes that do not. (Bread from Anna has a dairy, corn, soy, and rice free version--it is bean based. It is delicious and you can buy in bulk.) I have talked to Anna personally and she is fantastic. You can make all kinds of things with her mix.

Caryn

http://healthy-family.org

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Betty,

One more thing--

I found a good journal article from the official Journal of the American Academy of Pediatrics that addresses the nutrition needs of children with multiple food allergies. it is a PDF file so you could download it and print it out and refer to it regularly as you get your feet wet, so to speak.

http://healthy-family.org/forum/index.php?topic=42.0

Hope this helps!

Caryn

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Betty,

 

Be sure to get concise guidance on that low cholestrol level from the DAN!

 

If you are considering eliminating milk and egg, you want to be careful there. Does your child eat meat?

 

 

May I ask why you are worried about the low cholesterol? It runs in our family so I am a bit curious.

 

Sorry I can't be of much help regarding the test results.

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Yes Kim,

great point.

Lower cholesterol is also something that is often seen among undiagnosed celiacs. I just don't want Betty to get even more freaked out. Once her son starts eating right for his allergic needs these things will correct themselves. The tests in general are not 100% accurate, but I think it is safe to assume the eggs, milk, corn, and wheat are contributing to his overall problems-- just from my own personal experience with this. We had to cut out corn, wheat, eggs, and greatly reduced the milk (only once every four days or so, and never a 'glass of milk'. Tigger survived. It healed his gut. Now it can do the job it was intended to do-- digest food and nurture the body.

 

Low cholesterol and albumin levels may reflect malabsorption and malnutrition.

 

See the following study for more information:

http://www.blackwell-synergy.com/doi/abs/1...41.1999.01225.x

 

Many things straighten themselves over time once the celiac goes gluten free. It is hard to know whether or not Betty's son is indeed celiac. I am not a doc, but these are signs that may point to a possible cause and should be considered if she wants to get to the bottom of things and go for further testing. We never did that with Tigger. At one time I was sorry we didn't. Now I really don't care anymore because he is so happy and healthy being a normal 5 year old. Don't ever want to go back now. Don't need the test. Don't care. We just went to his 5 year check up with our doc and he has grown almost 2 1/2 inches since the dx last year and has gained 6 pounds. You all don't know how fantastic that is to us--- his almost two year's younger brother was often mistaken for a twin.

Healing will come in time. It will take a long time, but it will happen. And like I said before, we now eat everything in rotation except the two biggies: wheat and corn. So of the 17 allergies he is now down to 2.

Caryn

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Caryn,

 

Was Tigger sensitive to milk on his allergy test? What level? Or did you just decide to do the CF with the GF?

 

My little man tested at the low end of the "insignificant" range for all the cow and goat dairy products except yogurt. Also, I didn't realize that you cut eggs out for a time. What can you teach me from that experience? We tested moderate to egg whites and low to yolks.

 

Remember how excited I was about pineapple being one of his most significant allergens? You know, because it is so easy to avoid. Well, I just realized his favorite gluten-free bread, the reasonably priced one from Trader Joe's, is sweetened with pineapple! I just ordered a bread maker. Apparently it has a gluten-free setting. Do you use a breadmaker? Do you have any successful eggless recipes?

 

Tami

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Hey all,

 

Caryn, from what i remember, you could see almost immediate reactions when your son ingested gluten containing products? I know you responded to a question that i asked, and i thought "wow." Don't remember all of the details though.

 

It would probably be helpful for people investigating this route to search Caryn's posts. She has provided a wealth of info on this subject. Just click on her name anywhere on the forum, and you will get an option on the left hand side of a new screen that says "search members posts."

 

For others, it may be a different issue. I have such a limited eater, with one son, the other eats normally, that even a rotation diet has not been doable. Neither have autism/asperger's or such. Youngest (11) did test reactive for cow's milk and interestingly...not grains, which i wonder if that's accurate?

 

Anyway, a couple of articles on the low cholesterol. Again, autism research, but i have heard of negative behaviors when reducing food groups in low cholesterol children and cholesterol is important in overall health, which i'm certainly no expert on.

 

Pamela Kay,

 

I would fully investigate ANY condition that seems to run in your family. I'm finding some of the associated disease stuff, may provide a lot of clues about which pathways are the most problematic. Learn everything you can about cholesterol, lipids, what supplements help with utilizing fats etc. It's surprising what you can kick up!

 

http://www.docguide.com/news/content.nsf/n...52571E2006F2657

 

Study Discovers Statistically Significant Link Between Abnormally Low Cholesterol Levels and Autism Spectrum Disorders

 

You might want to search "low cholesterol+autism" there are quite a few articles.

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Kim,

Midway into the restriction diet Tigger was VERY reactive neurologically when he had gluten ingestion. Over time that changed and now he usually has only gastro issues. He basically either pukes or has explosive diarrhea. I have read and had learned from other celiacs that it is not uncommon for the 'recovering' person to be more reactive to gluten than the one that is continually eating it. I just found an article that discussed that very mystery. It has something to do with the addictive relationship that allergy sufferers have with their allergens. Haven't pieced it all together myself yet. Will get back to you on that. I am confused myself about the switch in symptoms, however I will say that prior to the tics he had episodes of vomiting and explosive diarrhea.... periods of infections that required antibiotics.....

All the one? Who knows?

Tami,

We did not test allergic/intolerant to milk. We had been doing a dairy reduced diet for quite some time at that point (he was on goat milk for the longest time) because of a suspected cow milk intolerance from infancy (I was told to go off of cow dairy while nursing). I don't know if this changed his results to reflect a false negative or not, but I read somewhere on a celiac site that it is a very good idea to limit dairy when initially going gluten free as dairy can aggravate the gut. Many celiacs initially go dairy free until their guts heal and then they reintroduce it. We have never eliminated cow dairy 100%, but Tigger does not drink milk. I try to use Ghee instead of butter for him whenever possible. He still eats cheese (minimal amounts on a rotating schedule and only those that are corn free). He can have about 1/4 cup of Kefir every day without issue (I mix it with a corn-free all natural fresh juice). He does not take Kefir every day at the moment. If I have it, otherwise not.

I will dig out his list of allergens and post that later, if I have time. Peanuts and Oats were on it. He can eat certified gluten free oats no problem now and he loves them. We just started that about a month ago. He also had stuff like spinach and pears. He eats those too. I will look it up-- I'm sure Betty especially will be curious.

Betty,

Before I forget--

Definitely the vitamins helped in the early stages to saturate his tissues and help his little body regain the nutrient levels it needed. We worked with a DAN doc. to get a compounded script after all our testing. We soon discovered over time that the vits we starting to make him feel nauseated. We were told that that can happen after a dietary change so we were delighted when we took him off the vits and he maintained his recovery level no problem. We have not seen a wax on since going gluten free, just a slow, steady wane over many months. We did see a stubborn nose scrunch that seemed to carry on for a few months but that too has waned. Our biggest problem now is corn (it's in everything), and I am pretty confident that corn makes him grind his teeth still at times. I am not sure if it is an itchy feeling in his mouth? It usually occurs immediately after ingestion. I then do a quick inventory of the food and often start calling manufacturers. Sure enough I discover corn hidden somewhere 99% of the time. (As a citric acid wash to keep meat from browning, as an ingredient in packaging, as a polish on fresh fruit).

Betty, check out Food Allergy Kitchen. It is a yahoo group. They have been very helpful to me this past year.

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Thanks.

 

Caryn, when you mentioned Ghee, I remembered reading somewhere that Cheri makes it. I know it is butter that is heated and has the foam scraped off the top. I would love to make it with butter sticks from Costco as I am paying $10 a jar for Ghee.

 

Cheri, if you are out there, what is your technique for making it? It does not have to be precise for my purposes as my son is not casein sensitive. I just like the idea of reducing dairy as much as I can so he can fill his quota on cheese.

 

Tami

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Thank you all so much for your responses. I was so upset over the weekend that I never went back to these boards. I wish I did because you all certainly made me feel so much better! Caryn you especially made it seem like I could do it as it was very helpful to organize the allergies into groups. I think I am feeling more of the stress as we are preparing to once again make a long distance move as my husband needs to find another job and the uncertainty and selling a house in this market is additional stress.

 

But its Monday morning and I have my DAN doctor appt next week. Based on everyone's advice, I think I am going to cut out gluten starting today as I can't imagine that is not going to be part of the plan and then hopefully get more structured guidance next week.

 

Thanks so much again! And if anyone knows good websites or cookbooks for gluten free diets that would be great. Thankfully we have a Whole Foods nearby -my only crtiterion in the next town we move to :) Betty

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Here is Tigger's original list from last March:

red (eliminate):

  • corn---still cannot eat, and the depths are pretty deep (no citric acid, no corn sugars, no corn proteins, no corn starches, etc....)
  • wheat---still cannot eat (and this includes any and all gluten grains: rye, contaminated oat, barley, spelt, triticale, duram, etc...)

orange (avoid):

  • cantaloupe--- (I don't like them so I never buy them)
  • cherry---(If it is in a product he eats it (ie: Larabars)
  • cocoa--- (just not on the menu most days but he will get it for a special occasion in low doses. ie: chocolate cake for his brother's birthday)
  • egg yolk--- eats some part of egg almost every day now. Probably not a good idea? Doesn't seem to be a problem right now.
  • hops--- Well, when he is 21 we'll have that talk.... or 18? or 16? Oh, don't want to think about that right now.
  • oat--- He eats this on rotation. Maybe once a week. He loves oatmeal. I buy a gluten free brand.
  • pineapple---don't eat them because of salicylate issues. Just got out of the habit. Before the IgG he was addicted to them.

yellow (limit):

  • barley--- part of the gluten thing
  • brewer's yeast---Same as the hops....
  • date--- Not on the menu. Prepared dates often have additives and preservatives, so they are out.
  • mustard--- he eats this probably once every four days or so. I don't keep track. It is not on the menu most days. (We buy whole kids--it is the only corn free one)
  • olive--- one of three or four oil varieties I rotate. No strict schedule. I just got into the habit of intermixing stuff.
  • peanut---he gets this less than once every four days. It is not in his repertoire of favorites. If his playmates ask for P.B. on their gluten free bread when they are here (;>) then he has to have it too.
  • pear---he eats them no problem. For the longest time I avoided them but now he gets them.
  • spinach---he eats it cooked and raw. Not a problem now.
  • squash---he eats zucchini, spaghetti squash, yellow squash, pumpkin, butternut, no problem.

Did I say 17? My bad. Looks like 18 here. Well, it is not like he is drinking beer anyway. LOL.

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