Naturopathic says one thing, Allergists says another

[azhorsegal]

OK, most of you know that my daugther saw a Naturopathic doctor and we were told she was allergic to gluten, corn, and Equal. Well, with my husband's request I took her to an allergist and had a scratch test done, and his finding is that she is NOT allergic to those foods. She had a slight reaction to egg white, but the allergist said it wasn't big enough to keep her away from it. The week earlier she tested negative for Celiac Disease. With that said about a week ago I took her off the gluten free diet and the avoidence of artificial colors and flavoring (including corn syrup) and the last two days her tics have been really bad, pretty much all muscle groups have been involved. When my daugther is "active" her tics are going on pretty much every second. Yesterday she would avoid standing because she would just bounce from the tics in her legs. Today she doesn't seem to be as bad, but she still has tics every 5-45 seconds. So I'm not sure if it's the artificial coloring and flavoring and corn syrup, or the gluten back in her diet. What I was thinking I could do now is take the next two weeks and avoid all artificial coloring and flavoring and also avoid corn syrup. Then give her a tall glass of Kool-aid and see what happens. During this time I won't worry about the gluten free diet. If I don't see any results then I'll take two weeks and give her a gluten free diet and then at the end of those two week give her wheat and see what happens.

 

I'm not sure what else to do, after going to the allergist I've been a little discouraged. Not that I WANT her to be allergic to those things, especially wheat, but I feel like I've come to another dead end on what could be causing my daughter's tics. Has anyone out there experience what I'm going through, Naturopathic doctor tells you one thing and an allergist tells you another. I'm pretty sure once the report gets back to my daughter's pediatrician he's going to think I'm a crazy mother, putting her daughter through all these tests, and probably wasting my money. I for one don't think spending time and money on my daughter is a waste, but it's still hard knowing someone probably thinks that of you.

[Chemar]

Hi

gotta run so cant post long but do remember that there is a big difference in hypersensitivity to foods vs allergy to them

 

the naturopath will possibly have noticed sensitivity, whereas the scratch test is for allergy. I personally prefer blood tests to scratch tests for reliability.

 

however, just because she tested negative to an allergy to something doesnt mean she is not SENSITIVE to it!!

 

re the artificial colors sweeteners flavors etc.....I can assure you that they DO cause flareups in tics, hyperactivity, OCD and general bad health in everyone! basically, when we injest those, we are injesting toxic stuff and so, nomatter the health concerns, I would personally advise avoiding them completely!!

[Guest]

Hi azhorsegal,

 

I wanted to mention that to see full benefits, your daughter may have to avoid all foods she's allergic/sensitive to. Also I would think avoiding the food items for a month and then adding it back in would be best. Make sure your daughter's not getting the foods anywhere else. If she craves them or is at family members/friends that would possible give her some of those foods, it's always possible she ate something on the list. As a child I was the queen of sneaking chocolate which my family tried to hide from me. I crave it badly if I eat it, but after ten days of not eating it, the cravings go away.

 

I read back through some posts and noticed that it looks like you added fish oil in at some point in June. Fish oil can be really good for some, but for others it can cause tics to increase. I would consider this as a possible cause of increase of tics.

 

Carolyn

[kim]

azhorsegal.

 

Have you been reading this thread: PANDAS question & food sensitivity quesiton

 

I would really recommend that you use the links provided for Immuno and ElisaAct

as they contain a lot of information and explaination on IgG vs. IgE and food sensitivity reactions.

 

Once you get a good understanding, a rotation diet will probably be an easier thing to attempt. I KNOW it can be hard, and easy to slip up, and once you do, your back to square one.

 

BTW did your daughter test positive to any environmental allergies...pollen, dustmites etc?

 

kim

[azhorsegal]

carolyn_Isc, on the fish oil, I actually have not given it to her in the past week, just been bad in remembering. So not sure if the fish oil was actually helping or not.

 

Kim, no environmental tests were done, just food. So that's certainly a possibility we might need to look at.

 

Chemar, thanks for the clarity between hypersensativity and allergy (didn't realize there was a difference), I will do my own test with food elimination to see what my daugther is truely reacting to. Will just take a little more time, but well worth it once I come to finding out the results.

 

Is anyone familiar with the Feingold Program? It was mentioned in Sheila's book, so I became a member and got my packet today. I will start both my daughters on the program, including no corn syrup and see what happens.

[Chemar]

Jeff and his family can attest to the benefits they have derived from being on the Feingold diet

[Sydsmom]

I think everyone answered well and just wanted to add that I knew my daughter had some food sensitivities and my husband also made me take her to allergist. Of course, nothing came up and my husband said, "Now let her eat dairy again". Ok fine I said, seething inside but praying he would come to his senses and trust me. 3 days later he humbly came to me and said, "I see it now. Take her off the dairy ASAP" She rages big time and has wild mood swings when on dairy. Hopefully, your husband will come to understand it all in time too. It all sounds so crazy until you try it and see the results. Goodluck to you!

[Claire]

azhorsegal

 

Everyone is giving good advice, but now (forgive me!) I feel the need to reclarify what I was trying to clarify for you before... It reinforces what Chemar and others said, but adds testing for delineation.

 

Allergist skin prick tests are more of an IgE 'allergic' reaction. The IgG blood tests that Kim and I were talking about test the food sensitivity, which is more correlated to tics. Immunolabs.com and Elisaact.com offer these tests.

 

The bottom line however is avoidance and the results. The most efficient way to test using an avoidance method is to take away everything for a month, then add one food back in the first week, and if no reaction it is okay, then add the second food and watch for a week. Dorothy Rapp discusses food removal in one of her books.

 

Sensitivities are not always immediate reactions, thus the week is needed to watch.

 

Just your daughters return of tics to me makes this avoidance test worth it.

 

Claire

[KGeorge]

Hello,

 

I am VERY new to tics in that my son just started displaying them about a week ago. Everything I have been reading has been sooo confusing. However, I am not new to trying to heal myself using the traditional medical paradigm. I have celiac disease and it was a long hard battle to deal with and I am still learing new things. It gets much easier though. Way back at the start of my problems I have had several different types of allergy testing, which showed many different types of results. In the end, it really didn't matter though if I was allergic to a food or sensitive to it. It only mattered what my reaction to the food was. It is a very tedious and long process to figure out how and to what you react to but it is very important to do. Stay away from a food for at least three weeks and then add it back and watch for reactions. Then the process will have to be done again to verify the reaction (unless it is a severe reaction, of course). The celiac disease caused all sorts of havaac with my digestion and at one point I was reacting to most foods. I am allergic to dairy and found that I crave it tremedously, especially after I eat some. The craving does go away after I haven't had any for 3 or 4 days.

 

My point is that I went to several allergists with different philosophies about allergies and each one thought the other was a quack. We go to doctors and believe that they have the answers but they don't. You really need to trust yourself and help your daughter to learn to trust herself in dealing with this.

 

I believe that the body has a natural tendancy to heal itself as long as you give it what it needs and do not over load it with toxins. I believe that health is a combination of physical, spiritual, mental and emotional aspects and that all of these need to be in balance and they all need to be addressed for good health.

 

I did want to add that at one point I was allergic to onions and I stayed away from them for years. I have been working on healing my digestion by eating grass feed beef raised without hormones and antibiotics (I will not buy supermarket beef), eating as much organic produce as possible, cutting out processed food as much as possible, drinking water only (hard to do with kids, but persistance is starting to work with my 11 year old daughter), and keeping things like McDonald's to a minimum. There's more, but in my healing, I am now able to eat onions without a reaction. With Celiac disease I do have to stay away from gluten for life, but the rest of my food allergies and sensitivities are getting better. I think that it is important to test for Celiac because it is so hard to diagnose but if there is a problem with gluten, your daughter will never get better without being off gluten for life. I have been reading the book "Celiac Disease, a hidden epidemic" by Peter H.R. Green, MD and Rory Jones and find the information valuable for diagnosing celiac disease. I had a biopsy done 6 months after I had been off gluten and when it came back negative my doctor didn't know that I had to be on gluten in order for the test to show positive if I was sensitive.

 

Anyway, I hope I make sense. I just wanted to add that allergies to food can change. My son just started with tics and I have been looking for a corelation with celiac disease and have not found much info.

 

Celiac disease has helped me to understand health and has given me the gift of a wealth of information about myself. I take things easier and enjoy life much more than I ever did. I found out what was important in life. Knowing all this though, doesn't change the fact that I still want "the magic pill" for my son.

 

KGeorge

[azhorsegal]

Sydsmom, thanks for the encouragement. Sounds like my husband will need to see physical proof just like your husband, so hopefully with time he'll be more open minded.

 

Claire, thanks for the additional clarification (lol ). I was going to just do the Feingold Diet and see what happens by avoiding all the food additives, artificial flavors and colors, aspartame, and Natural Salicylates. But maybe I should also go Gluten free and that way, like you said, at the end of the month I can reintroduce something and see what happens. It would be quicker than trying just the Feingold Diet for a month and then go Gluten Free for a month. I'm positive that the combination of the two is a much healthier diet, so it's not like I'm hurting her. The one thing that does make it a lot tougher though, is the Naturopathic doctor said she was also sensative to corn , which makes it even harder to stay gluten free. BUT, I did spend a lot of money two weeks ago on Gluten and corn free products (flour and baking mixes) that I probably have enough things to get by for a month. With that said, her tics are more this morning than the last few days, but still pretty mild compared to prior of starting the diet. She did have her swim club last night though, so maybe it was the chlorine. I'd prefer the gluten and additives to be the culprit though, as she LOVES to swim, she's a fish, and starting on a swim team, so I'm not sure what she'd do if she was told she had to stay out of the water.

 

OK, so it's going to be hard, BUT the only way to get to the bottom of it is to start her on the Feingold/Gluten/Corn free diet now, and in one month, start adding foods, give it one week and see what happens. My head hurts just thinking about it, lol. (It was a good thing I didn't buy that horse last month, and stopped my riding lessons, because this is going to take all my time, lol )

 

Edit: Oh, KGeorge, thanks for the encouraging words, it really helped.

[Jeff]

Hi all, Yes, removing the artificial colors, flavors, and "BH" preservatives made ALL the difference for us in eliminating the tics. We have been Feingold members for about 7 years now, and are very grateful to have found it. Within a few weeks of eliminating the artificials, my daughter's tics went from serious to a non-issue. Although we are still members of FG, we have been able to relax our restrictions considerably (plus, my girls are 12 and 14 now). Occasional cheats do not cause problems. We have found that the artificial colors are the worst triggers for us.

The biggest advantage of FG is the book that they publish every year with "approved" products, and the members' Bulletin Board where you can share experiences and recipes. Most FG members are there because of problems with ADD, ADHD, etc, but there are a few of us who are there because of TS.

I'd be happy to answer any questions you have about the program, foods, etc. Feel free to ask.

I'm sure you have a ton of information that you're trying to process right now. Please try not to get overwhelmed and try everything at once. That's really hard on everyone in the family.

Best wishes.

Jeff

[azhorsegal]

Hi Jeff, thanks so much for joining the discussion. And you are right, it's pretty overwhelming at first, but like you said, I'm just taking one step at a time and eventually we will be on the right track. With that said however, I have already noticed a difference in my duaghter's tics, she still has them, but not nearly as bad as she did. It might just be the tics are just in the down cycle at the moment, but I'm pretty sure time will tell that it has in fact made a difference. I do have a question for you though. The hardest part for me is getting rid of apples and berries, and even apricots. I'm finding it hard in finding a fruit spread she can have. I know it says pineapple and pomegranate jelly, but trying to find it is another story. What do you use? The other thing is bread. I have not been able to find any of the breads they list, though I did find one at our Health Food Store (and luckily it's also at my local grocery). It's called Grandma Sycamore's Home-Maid Bread (100% Honey Whole Wheat). It had the least amount of ingredient, but I'd like to share them with you and see if you see anything "bad". Ingredients: Whole Wheat Flour, Water, Soybean Oil, Honey, Sugar, Contains 2% of less of the following: Salt, Yeast, Dough Conditioner (DATEM), Corn Sugar, Soy Oil, Vinegar, Calcium Propionate (Preservative), Calcium Sulfate.

 

I'm thinking maybe the preservative is bad, but I just don't know what else to use. I was happy it didn't have corn syrup in it (but is corn sugar the same?), which is one of the main ingredients I'm trying to avoid, next to artificial food coloring and flavoring. This bread is actually made localy (I think) because it says Packed by Capistrano Bakery, Inc. in Tempe, AZ.

 

Side Note: I did say I was going to go Gluten Free too, but I quickly gave up on that as it's way to hard to do AND do everything in the Feingold Diet. So if this doesn't work after doing it for a month then I'll go Gluten free, still trying to impliment some of the Feingold Diet (maybe by then I'll have a better handle on it). Thanks Jeff, in advance for answering my questions. It's nice to know someone else has found success with this diet and I'm hopeful we will to. If nothing else, I'm happy with the much healthier diet we are eating. I even make homemade syrup now and my kids love it!!!

[azhorsegal]

Just bumping up to see if Jeff can answer my questions.

[Jeff]

Hi Azhorsegal, Sorry to take so long...

Yes, we felt terrible at first having to eliminate so many fruits!! People thought we were crazy (what do you mean she can't have an apple!!??) My oldest was senstive to salicylates, so we had to be careful. We found, though, that she was sensitive to some, but not all... She really reacted to tomatoes, but not to grapes... which was lucky, as she likes grape jelly. Pear jam and mango jam were also helpful during that period. Look in some natural food stores, Trader Joes, Whole Foods, etc.

We never did find a FG acceptable bread, so we just stayed with our usual brand of 100% whole wheat, which was not on the list. Yes, I would guess that corn sugar is indeed corn syrup. If you're senstive to that, you should probably avoid it. You might have luck with an organic bread.. they usually use a cane syrup, not corn. I wouldn't worry about the calcium propionate... but do avoid the three BH preservatives.

 

If you're near a Whole Foods, they have a 365 Brand of sodas with no CS, in case you're looking for sodas. We've also had good luck with the Coke from Mexico. They use cane syrup, not corn. Comes in a bottle like the old days.... more expensive, but it's been a great find for us.

 

Going on vacation tomorrow, so won't be checking in for a while. Best wishes.

 

pjc

[azhorsegal]

LOL, yeah I've had that reaction to, "What, no apples!?" I was not really happy when I picked her up from Sunday School class this morning to find a glazed sprinkled donut in her hand. Teacher had passed one out to every child. She had it pretty much eaten by the time I saw her. So far I haven't seen any effects. I did make the comment that I was trying to keep her away from sugars and you should have seen the looks I got, like I was neglecting my child or something. Funny how the one person that looked at me has a son that to me has ADHD, but the mom has yet to test him, nor has kept him away from sugar, sodas, and all those other foods that is making that poor boy bounce off the walls.

 

My daughter doesn't like mango's so I've allowed her to have strawberry jam with no perservatives, artificial colors, and flavors, and so far she doesn't show any signs of reactions to it. But if I can find pear jam or pomegranit I'll switch. I'll have to try and find that 365 Brand of soda as my daugther loves Sprite, but hasn't had any in about a month, so that would be a nice treat for her.

 

Thanks for getting back, have a great vacation.