Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New And Wondering About N.a.e.t.


momonamission

Recommended Posts

momonamission Newbie

Hi! I am new here. And have had a very hard year. My 4 1/2 year old son is in the process of being diagnosed with Celiac. He also has many food allergies. We started this journey about a year ago. We had odd behavior starting. Always irritable, whining to the extreme about everything, never slept since birth, negative about everything. There is so much to list.... He went from perfect happy kid to this child that we did not know. Nothing worked, and nothing was consistant. He seemed like he was regressing.He wasn't, it turns out he just stopped progressing. He was completely normal until age 3 yr. and then things started. I was told Aspergers, Bipolar and ADHD and handed a tissue and some drugs and sent on my way. Told that this is a grey area age and we need to wait and see. That Aspergers will get better with time and to treat the symptoms. Everything else was a waste of $ to do....... Well, at 4 yr..... isn't this the important time to do something!!!! No one would! I read up on all these things and my son did not meet the critiria! Because he did take a stimulant for a bit - it ruled out the Aspergers. At this time he started REALLY bad runny stool /// 2 weeks of black, then brown with mucous, then fat globs and loose for 3 more weeks. But no one wanted to do anything . Finally I made a list of EVERYTHING that needs to be ruled out before coming to the conclusion of Bipolar... The list was very long and Celiac was on there. I was DX'd with IBS in the past..... ????? Hmmmmm.... Went to the PCP and demanded the tests. He sent me to a allergist/immunoloist who found the allergies and ran blood work. He is highly allergic to Dairy (I had him on organic dairy), Highly to Corn (which is in everything), rice, tomatoe and a few others. Took him off all dairy and corn and there were instant results! But still not great. Blood work showed high Copper and a small reaction to gluten. We now beleive that when he started the med it was too much and triggered a reaction with the organic dairy. Now he is healing. I am keeping him off dairy, corn and gluten. Its hard! But I have become very creative! I now have a great pediatritian that we will see 1/2/06. We are starting a new insurance too. I do not need a referral anymore. I am also doing the N.A.E.T therapty on him to help with the food allergies. It is making a diference so far.

Has anyone tried the NAET?

And what do you all reccommend to be my next step... WHat blood work and tests need to be done for him and me??????

I am on the right path now, things are getting beter. ANd I have the right people helping me, but do not know anyone else with Celiac......

ThANKS!

MOMONAMISSION


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

I tried NAET and to be honest with you I thought it was a load of crap. There MAY be some validity to helping with some of the allergies, but CELIAC IS NOT AN ALLERGY AND CANNOT BE CURED BY NAET. Even my NAET practioner acknowledged that fact. In my humble opinion, NAET didn't work for me and cost me a ton of money, you would be better off doing allergy elimination diets and rotation diets to determine what all he is allergic to.

Also, many Celiacs are intolerant to dairy until their damaged digestive systems heal. After he has been off of gluten for at least 3 to 6 months you might want to consider retesting him on the dairy allergy. (meaning it may not be a true allergy.) Talk all this over with your allergist though, as I am not an expert, just a person with Celiac and a mom of a kid with Celiac and I have multiple allergies myself (luckily not food allergies)

Jnkmnky Collaborator

Just put everything else on hold for now. Has your child had the blood test for Celiac? Once he's had his blood drawn, put him on a 100% gluten free diet. No mistakes-- they're not an option. Give it two weeks or so, and make your best determination as to whether or not you think this is an area you should persue based on positive results. Don't add any more "ideas" to this experiment. Just do the gluten free and adhere to any known allergy restrictions. Do dairy free as a new celiac often has temporary lactose intolerance. Once the villi re-grow *(about 6-9months) you can reintroduce dairy. We use the Wholefoods 365 Organic brand of Vanilla rice milk. My kids love it.

shayesmom Rookie
Has anyone tried the NAET?

And what do you all reccommend to be my next step... WHat blood work and tests need to be done for him and me??????

I am on the right path now, things are getting beter. ANd I have the right people helping me, but do not know anyone else with Celiac......

ThANKS!

MOMONAMISSION

My daughter is doing NAET right now for her food allergies and it really does seem to be helping. However, it is not really supposed to help with Celiac's Disease, only allergies.

Did your son have any heavy metal testing done while on NAET? My dd did and came back with tests that were high in lead, aluminum, mercury and a few other heavy metals. From what I am reading, these can all contribute to food allergies and gastrointestinal problems. So we have also been doing chelation therapy and I have been wondering if perhaps the chelation is what is really helping...although the egg allergy disappeared in 4 days with NAET BEFORE we even started chelation.

I think that ultimately, only elimination can really pinpoint allergens but I cannot deny that the NAET has helped us. I guess it will really boil down to whether or not your son has Celiac's or actually does have an allergy to gluten. Either way, I hope that you continue on the path to recovery and find some real answers soon.

tiffjake Enthusiast
My daughter is doing NAET right now

NAET?????

shayesmom Rookie
NAET?????

Nambudripad's Allergy Elimination Techniques.

or visit www.naet.com. There is a videoclip that a local news crew did a report on. It is weird, weird, weird. But for some, it does seem to help with food allergies. I have been surprised by it to say the least.

momonamission Newbie

My son has had a ton of blood work. He keeps getting poked and poked and ........... His copper and alk phos is high. He showed a slight reaction on one of the gluten tests. They still have not done any of the tests that we really need. So he will have to get poked again. But I am waiting to make sure that it is from someone who knows what they are doing! He is severly allergic to milk, corn, rice , some vegs and some fruits. The corn and rice is a problem because of the gluten . This is why I started the NAET. It is helping so far. I try to do one thing at a time, so I know what is doing what. The doctors are clueless as to what to do test wise. I have new insurance in 2 weeks and no referral needed. So I will be able to do what I need. I have been fighting the neurologist, psychiatrist thing and finally got true answers that its not his mind, but something truely with his system. I have a great dr doing the NAET. We have only put a little into it so far. I also have someone who can do the serum extract for food allergies. One at a time. The Celiac comes first. He has been off all gluten for 4-5 days now and WOW!!!! Big difference! He isn't as spacey either. I now uderstand that the only thing to do for Celiac is to stay away from all gluten. Thanks to everyone for your thoughts! I am just so happy to be away from the mental illness path now. He's only 4. Poor little guy....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



DylansMom Rookie

I am sorry to hear about your little guy. My son Dylan is 4 1/2 also and was dx this past August. I do not know anything about NAET, but I do know that my gastroenderologist said that this is the worst case he has seen, (not that I hold alot of faith in that. Maybe he has 2 cases... :P I think he has more than that,...) Anyway, he told me that for the next 3-6 months Dylan needs to be lactose free as well as friut juice due to sulcrose intolerant. He too stated this may heal and not be an issue once the villi heal and it could just be temporary.

All this to say, I am right there with you having a 4 1/2 year old. He has been gluten free now since October as we had a set back in September and one in October due to cross contamination. It was tough in the beginning but we seem to have a better grasp. Hang in there. Feel free to PM if you want to vent or have questions. I may not have answers but I am willing to listen (well read anyway :) )

Jnkmnky Collaborator
My son has had a ton of blood work. He keeps getting poked and poked and ........... His copper and alk phos is high. He showed a slight reaction on one of the gluten tests. They still have not done any of the tests that we really need. So he will have to get poked again. But I am waiting to make sure that it is from someone who knows what they are doing! He is severly allergic to milk, corn, rice , some vegs and some fruits. The corn and rice is a problem because of the gluten . This is why I started the NAET. It is helping so far. I try to do one thing at a time, so I know what is doing what. The doctors are clueless as to what to do test wise. I have new insurance in 2 weeks and no referral needed. So I will be able to do what I need. I have been fighting the neurologist, psychiatrist thing and finally got true answers that its not his mind, but something truely with his system. I have a great dr doing the NAET. We have only put a little into it so far. I also have someone who can do the serum extract for food allergies. One at a time. The Celiac comes first. He has been off all gluten for 4-5 days now and WOW!!!! Big difference! He isn't as spacey either. I now uderstand that the only thing to do for Celiac is to stay away from all gluten. Thanks to everyone for your thoughts! I am just so happy to be away from the mental illness path now. He's only 4. Poor little guy....

Corn and rice are "gluten free". Safe for Celiacs.

shayesmom Rookie
Corn and rice are "gluten free". Safe for Celiacs.

I think what she meant was that her child is not only affected by celiac's, but also has a severe allergy to corn and rice (among other things I am sure). I could be misinterpreting though. But I do know several people who are gluten intolerant as well as have severe allergies to many other foods. One of my best friends has been gluten-free for over 15 years and he still cannot have corn, beans, berries, sugar, salt, dairy, eggs, fish or shellfish (to name a few). He's had several biopsies (going back on glutens for them in hopes of a diagnosis) and still hasn't been diagnosed with Celiac's. The GIs he has seen really have no name for what he has. They believe it's an extreme autoimmune disorder. A 100% gluten-free diet has NOT changed the severity of his other food allergies. It's pretty scary that someone's system could get to be this sensitive to so many things and it is very difficult to prepare meals to accomodate it. He suffers terrible migraines and malaise when he is exposed to an allergen and the only answer the docs have is a pill that costs $30 each (which only relieve the headaches for 6-8 hours).

Quite honestly, he is allergic to most foods and on top of it has to rotate the foods that are left often as he is prone to developing new allergies. Bananas and apples are now out due to him not rotating foods enough. This has been going on since he was a child and he is now 50.

I've only read of two other cases of this occuring. The first being Dr. William Donald Kelley's wife and the second being Dr. Devi Nambudripad. Hopefully, this bizarre health scenario is not something that affects anyone here.

momonamission Newbie

Yes, you are correct. My son is allergic to CORN & RICE, milk, apples, melons, califlower, tomatoes and more.... THe corn and milk are a 4+ on the allergy scale. Others are a 3+. My allergist has family members with Celiac so she has a great understanding of it. ANd the food allergies do add to the Celiac. I was told that he became so sensitive because of Celiac. It all makes sense to me now. ANy change is tough. I have a tough time because he is an extremely picky eater to begin with and has this odd gag thing that he does. I am almost tempted to get him hypnotised to even try a new food! Maybe there is a NAET clearing for preschool fussy eaters!! :D I will go through old posts and educate my self further.

Does anyone reccommend any books on Celiac and kids?

Everyone have a GREAT Holiday!

Thanks for your thoughts!!!

H

shayesmom Rookie
Yes, you are correct. My son is allergic to CORN & RICE, milk, apples, melons, califlower, tomatoes and more.... THe corn and milk are a 4+ on the allergy scale. Others are a 3+. My allergist has family members with Celiac so she has a great understanding of it. ANd the food allergies do add to the Celiac. I was told that he became so sensitive because of Celiac. It all makes sense to me now. ANy change is tough. I have a tough time because he is an extremely picky eater to begin with and has this odd gag thing that he does. I am almost tempted to get him hypnotised to even try a new food! Maybe there is a NAET clearing for preschool fussy eaters!! :D I will go through old posts and educate my self further.

There is mention of NAET and TBM (Total Body Modification) on Dr. Mercola's website. Open Original Shared Link. At some point, I also found the physical explanation for why these therapies appear to work. But in any case, momonamission, I definitely understand why you've chosen the path that you have. My dd did not go in for the skin prick test, just an abbreviated blood test. She was only slightly sensitive to whey and eggs at the time and was okay with everything else. Today, there are quite a few more foods on the forbidden list. But thankfully, that has been changed by NAET. I can understand why Celiac's would worsen the food allergies and sensitivities, but in our case (and that of my friend) the allergies continued to worsen and expand even on a gluten-free diet.

I think that you will see a difference in his eating habits once you get some of this straightened out. My dd was also a picky eater. These days, I believe that she actually didn't trust her food to not make her sick and therefore only ate enough to "get by". Just my observation. Good luck to you and Happy Holidays!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.