Allergies have me stumped

Discussion in 'Healthful Living / Natural Treatments Archive' started by susiestar, Apr 18, 2005.

  1. susiestar

    susiestar Roll With It

    I had allergy testing done recently. so did Jess and thank you. thank you is allergic to much and has GERD. but thank you only reacted to wheat as a fresh food, not as a stored prepared food, whatever that means. They did his food testing on 2 separate days and tested wheat on both of them.

    It was skin testing for all of us. Jess reacted very strongly to almost everything but mold and food. It took 2 weeks for the bumps from the tests to go down (should have gone down in days, according to the allergist). Both of htem are on immunotherapy.

    I only reacted to the control where they injected straight histamine. But I have horrible allergy symptoms and get terrible migraines from many plants and other allergens.

    Can anyone explain any of htis to me?

    Also, we let thank you add some of the foods he had previously reacted to back to his diet. But we are having really major meltdowns, poor sleeping, poor impulse control, and he is clawing at himself and making animal growling sounds (not kids growls, but out of character for him - hard to explain). could the foods we thought he was allergic to actually be causing this, even though the tests showed he wasn't allergic?


  2. OTE

    OTE Active Member

    Pardon my naive reply here.. from other Pervasive Developmental Disorder (PDD) kids I know who do well on a gluten and casein free diet... I thought the problem was something called "leaky gut". That is, the Pervasive Developmental Disorder (PDD) child reacts to the food as it's being processed in the intestines. It's not an immunology issue and I don't think they turn up positive on allergy tests. But I could be wrong. Have you looked at "leaky gut" for thank you? I think there's links on the links page under autism.
  3. cmdh

    cmdh New Member

    Our difficult child has very similar symptoms. Her GERD was a result of food intollerances. Once we modified her diet she was off all medications - a concern of ours because we had read so much that the medications only reduce the acid -making it harder to digest food and ultimately complicating things further.

    She test negative via normal allergy testing to everything however has allergic type reactions to lots of foods and environmental things. They are then classified as either intolerances or sensitivities. The idea is that they are irritants but not caused by typical histamines.

    When a child has a damaged small intestine (from things like canadias that can burrow into the walls of the intestine) small particles of undigested food actually leak out (hence leaky gut). The body sees these as a foreign substance and sends (as I call them) blood police to go out and collect them. These police then grab them and take them someplace to get rid of them... my difficult child's asthma used to flare up and her behavior get to be out of control. These toxins cause the body to go into overdrive. It's so busy fighting these that it has a difficult time fighting normal irritants - my difficult child gets hypersensitive to anything she touches and will break out with blisters - she actually developed an allergy to the paper towels at school! Her behavior also gets out of control.

    Many children thrive on the girlfriend diet (as did ours) the problem is if you don’t keep the leaky gut in check ANYTHING that goes in their mouth they have a chance of developing because It can leak out and the body responds to it. This is where we are now. We have already eliminated 13 major groups and are starting to see signs of additional intolerances.
  4. susiestar

    susiestar Roll With It

    I had NO idea!! I will give this a shot as soon as we are done moving. It is hard to eliminate anything the week we are moving :rolleyes: , but next week when I have my kitchen together I will find the books and start the changeover in our diets!!

    Thanks so much!!!

  5. Waldorf Mom

    Waldorf Mom New Member

    ... and skin testing does not check for IgG reactions (delayed). ALL of my son's allergies were the IgG type... so had he gone to a traditional allergist, his allergies would not have been detected... and he'd still be ODD.

    I know that growl *VERY* well. My son did that for years until we eliminated every single one of his IgG allergies. Even a few pieces of banana bread which had just a tiny amount of corn (1 tsp of baking powder which used corn starch as an anti-caking agent), got my son growling at his caretaker. The caretaker was very upset because she had carefully tried to avoid all his allergens using Spelt flour, olive oil... but she had no idea baking powder uses cornstarch - and that was enough to do it.

    You can have an ELISA blood test which checks for both IgE and IgG allergies at Great Smokies Diagnostic Lab:

    We use "Advanced JMT", an acupressure treatment (no needles), to treat my son's allergies. He now eats a much more normal diet (but still very healthy - no processed foods, dyes, etc.). The JMT also treats his environmental allergens (dust mites, pollen, mold, etc.). Thank goodness it works, or he'd either have to live in a bubble or we'd have to put up with his ODD behavior.

    I hope this gives you a few more things to check into.

    Take care,
    Waldorf Mom
  6. cmdh

    cmdh New Member

    I was looking for someone that had used an ELISA test. Researched it to death but wanted to talk with someone that experienced it first hand. I am assuming from your post that you had great success after implementing its results. The Celiac foundation supports York labs. I’ll have to look into great smokies – I am to understand they set the benchmark when it comes to many of these types of tests. We had our original test for canidas done through them – Every one of her doctors (Including Mayo’s and a nutritionist at children’s memorial in Chicago) said they over exaggerate the findings and or always find something. Always find something… I would probably say that’s true because someone that is feeling 110% doesn’t have a test done. :Bonkers: Usually you’re SICK AND HAVE IT DONE so their sample pool would be skewed on the high side…. Duh. :Bonkers: As for the over exaggeration I don’t have a clue how to compare labs. Does anyone know if there is any research on labs and their accuracy rate??? or something to that effect.

    I also wanted to give you another source on nutrition and neurological disorders like ADD/Pervasive Developmental Disorder (PDD) it is entitled: Enzymes for Autism and other neurological conditions. Info can be found here . I found this book to be a WEALTH of knowledge. In fact the only lead we have had in 2 years to help my daughter’s food intolerances. It goes into detail about leaky gut, intolerances and how they affect neurologically challenged GFG’s!
  7. Waldorf Mom

    Waldorf Mom New Member

    Yes, I think the other lab we worked with *was* York Labs. The doctor who ordered the test for me before I even had children had told me she thought they were more reliable.... but that was 12 years ago now.

    I've heard criticism that the tests show more allergies/sensitivities than people actually have, but I'm not sure where this comes from. My guess is that people say, "oh, I can eat wheat and don't have a reaction"... but what they don't see is the internal reaction that's happening in their body... maybe they don't notice symptoms, so they think it's fine?

    I would rather start with a larger list and eliminate all of them and then try adding back one at a time. If you don't eliminate everything that causes isues, then you may never know that it was the diet because you missed one item.

    By the way, the test results for ELISA come back with a scale of 0 to 4 I think, with 0 being no reaction. Great Smokies added in a "trace" reaction which falls between 0 and 1. Some doctors will say that you only have to eliminate the 3's and 4's and that the 0,1's and often 2's cause no reaction at all. BUT, right in our test results, it clearly stated that even the foods with a "1" could cause as severe a reaction as 4 and should be avoided. When you start re-introducing items, you start with the trace reactions and the 1s... one at a time.

    My son wasn't able to tolerate anything on his list that was rated as even a trace. Unfortunately with so many allergies and a limited diet of foods he *could* eat, he eventually became allergic to foods that he originally tested negative for. That was about 15 months into the diet and about the time I found the allergy elimination treatments.

    I forgot to mention that my son was actually allergic to water... not the filtered water from home... but water at the school he attended (slight reaction to their filtered water, but strong reaction environmentally to the water for washing hands- which explained why he always seemed to have an issue soon after snack and lunch -- when he wasn't reacting to foods!). We also had to be careful about the ingredients in his toothpaste - nevermind the ones with dyes, we were giving him natural toothpaste which had carrot extract in it. Well, he was allergic to carrots and that small amount was enough to bring back his ODD.

    We feel highly qualified to be detectives after all the things we had to figure out in order to help him! LOL! But the work paid off. Our son is healthy and happy and rarely ODD anymore... and when he is, we know he's reacting to something and we bring him in for an Advanced JMT treatment and she figures it out and he goes back to his sweet self again.

    I hope you figure it out soon. I really can feel for you. You're descibing just what my son was like - the meltdowns, the lack of impulse control, and that indescribable growl (I know what you mean about it not being a 'kid's growl' - not like a rarrrhh ... you'd swear it's almost beast-like... a low sounding grrrrrr).

    Waldorf Mom
  8. cmdh

    cmdh New Member

    Wow Waldorf Mom

    your son sounds like my difficult child. She is starting to have reactions to the foods that were fine before... i.e. shas eaten corn since she was 1 at 3 developed a reaction. Thank you leaky gut! :Hot Head:

    I agree. I would rather start by elimanating everything that showed a reaction. Besides they say kids have a better chance at overcoming the allergy is they stay away from the irritant.

    I've read other posts that you referenced JMT. I really need to look into it a bit more. What encouraged you to try it?

    Her dr told me that she became so sensitive to things touching her skin because her body was so busy fighting the toxins released from her leaky gut and constipation.

    How in the world did you figure out it was the water. you are a true warrior mom! :Warrior: To be honest It came to me in the middle of the night what was causing her hands to break out only at school. It was the paper towels. Now I send regular towels and we don't have a problem.... Or untill the next episode.

    I think we would be a hit with our own reality show... somewhat of a spin off of CSI. Na on second hand I don't think many would believe us! Most now just think I'm nuts. :Bonkers:
  9. Waldorf Mom

    Waldorf Mom New Member

    What made us try JMT? Desperation!

    We did the diet thing for 18 months before we discovered NAET, an acupressure treatment that eliminates one allergen at a time. After each visit, my son could eat one of his allergens again with no reaction. But soon spring season started and he started raging again - and the practitioner discovered he had environmental allergens that also needed to get treated.

    Since NAET treats just one allergen at a time and you can only get one treatment every 3-4 days, it was taking a loooonnng time to get through his list of allergies. Some pollens took multiple treatments. We were spending 1.5 - 3 hours every week driving to/from visits plys the 20 minute treatment. Thankfully this practitioner only charged $40/visit for a child and our insurance covered covered 80% once we hit our out of pocket max (which didn't take long!).

    About 9 months later we started seeing a doctor 1.5 hours away in another state who treated allergies with a modified NAET technique called NEAT (natural elimination of allergy treatment), where he can desensitize you to whatever foods you're allergic to in one visit. Plus, he added some new homeopathic treatments that we've never tried before ("New England Mix" for tree, pollen, etc. and "North Atlantic Mold Mix" by Dolisos. He also gave us the "Isopathic Phenolic Rings" remedy by Energetix which "assists in the homeopathic support of food, environmental, and neurotransmitter and hormonal sensitivities").

    The NEAT treatments were a big help because he cleared my son of so many remaining allergens in one visit. The cost was more for the visit, but saved money in the long run. A year later we went back again for another session (the NAET and NEAT treatments don't hold forever) and the doctor had just gotten back from a conference on pain management. He told us about some conversations he had with doctors who had just discovered a new treatment called Advanced JMT, which was being used to treat arthritis, fibromyalgia, allergies, and more. Our doctor was so impressed that he planned to get trained in it the following year - but in the mena time suggested that we look into seeing if we could find a practitioner in our area.

    I found only a few trained people in our state - the closest about 45 minutes away. We gave it a try and really liked the practitioner and the results. Allergies that my son had supposedly been cleared of using NAET and NEAT but still seemed to be a problem for him, though he didn't test allergic using the NAET protocol, were showing up as allergens using the JMT protocol... because JMT tests and treats on more levels than NAET.

    It was frustrating to feel like we had to start all over again -- but I had to keep reminding myself that mnay of the foods he was treated for weren't allergens anymore, it was mostly just the environmental ones that he seemed to be reacting to on multiple levels. It wasn't really starting from scratch again.

    The JMT protocol works really well for my son. Most of his treatments have really held well, and we only go for allergy checks a few times a year... but a year ago another practitioner one town over got trained and we started seeing her instead. She's a chiropractor, energy healer (a medical intuitive too), and Advanced JMT practitioner. My children LOVE visits with her. We used to go at least once or twice a month, but now we go every 6-8 weeks for energy tune-ups. Every once in a while she needs to do a JMT treatment on my son, but not very often.

    Recently he reacted to my daughter's new guinea pigs. We brought in some of their fur, food and bedding. He tested positive, she treated him with JMT, and now he's fine around them. You can do the same with stuff from your vacuum cleaner, items stored in your basement (molds), etc.

    As for how we figured out the water, I think it may have been our practitioner who helped figure that one out. I collected samples of water, soap, etc and brought them in. He was muscle-tested and then they could tell if he was allergic.

    My son's 1st grade teacher apologized at the end of the school year. She kept a diary on each child and she said as she reviewed it for our final conference she found a pattern. With every change of season my son's behavior seriously degraded (he once marched across the desks in the classroom, and another time hid under them and growled at her!). She noted when she told me and recalled that my reaction was usually what she considered some excuse about an allergy and that I would get him tested and treated. His behavior would improve - and she knew this because she didn't note poor behavior in the diary - her comments were about other things.

    She was amazed that he really was that sensitive and that we were able to find a treatment to help him. She was sorry that she had spent time during the year thinking we were parents who wouldn't make our son take responsibility for his behavior.. when in reality we were - we were seeking help for him so he was capable of not being impulsive and capable of listening and behaving... and he really was allergic to things that caused him to have ODD.

    This site was the first place I ever felt supported with my son (besides my husband) and it's the site that helped give me information, education, and ammunition to get my son tested for allergies. It's why I come back to help others even though he's been mostly just a spirited easy child for the past few years. I'm so grateful for the advice I received, now it's my turn to help.

    Geesh - I'm long winded today! Sorry!

    Take care,
    Waldorf Mom
  10. st_helen

    st_helen New Member

    ok, If your difficult child had a reaction to wheat fresh then I would stay away from wheat in any form. my difficult child has an allergist and he did a skin test, a blood test and a double blind food challenge.

    That is hwo we were able to really find out what my difficult child is allergic to. As far as the gluten free/ casien free diet, well that did not help m y difficult child much. she can't have any type of dairy anyway. But, her issues are a bit more complicated due to her history.

    If your child has reactions to the food behaivoral, and he is back doing the behaivor after re introduction to the foods, I would take the foods away again.

    The only foods that the allergist did not do a double blind food challenge was fish and and shell fish. My daughter ate a tuna sandwich while waiting and she had an anaphalactic reaction to the tuna. he was not going to put her through that type of scenario.

    I wish you well.