Confused On Symptoms. Need A Little Help.

[shayesmom]

Okay, this may sound a bit strange but I really need some opinions from some diagnosed celiacs. I hope that I can post this so it makes sense.

Before the age of one, my dd was diagnosed with failure to thrive. The pedi(s) ran all sorts of tests and eventually referred us to a pediatric GI doc when dd was around 15 months. By that time, I had consulted with an acupressurist with my dd's symptoms and she'd told me that she thought it was a food allergy (mostly wheat or dairy) and possibly celiac's. Well, I took dd off of wheat and she got better. Then she started reacting to oats, barley, spelt....all things that previously she had tolerated and she kept getting better. Eventually, I also ended up having to take her off of eggs, dairy and soy. And I had a pretty happy, healthy child. Because of dd's improvements and her borderline appearance on the weight percentile charts, I never went ahead with the endoscopy (I felt it would be cruel to put her back on glutens and since a positive biopsy would have ended with the same outcome - a gluten-free diet - I didn't see much of a point).

Anyway, we have been gluten-free for over a year now and in the past few months, I have been taking dd for NAET treatments to help her with her other food allergies. Eggs are back on the menu and so is dairy in moderation (haven't treated for soy yet). So here's where I get confused. According to the NAET practioner, my dd has "cleared" her gluten sensitivity. I have tested dd a few items with gluten with mixed results. We've only tried 3 or 4 things and twice there was no reaction. Would that be possible with true Celiac's? It seems to me that ANY amount of gluten should set her off so why would she not react those two times? Usually, we got the instant D (within MINUTES) and hyperactivity for a few hours. In the two instances where there was no reaction, there was literally NO reaction.

So I guess I need some of you to share what you've experienced and to tell me if this is possible with Celiac's or if maybe I am looking at a gluten intolerance. To tell the truth, I am not really that interested in going back to a regular diet and I suppose this confusion is part of the price I have to pay for opting out of the biopsy, but I really would like to know what you guys think. The whole gluten-free diet was really weird for us because in the beginning, it was only wheat that set her off and she ate spelt, barley and oats without any incident for several months. Then she began reacting to one at a time over the period of another two months until eventually, we were completely off of them all. We had some heavy metal testing done and my dd did have some high levels of lead, aluminum and mercury and now I am reading that this can cause gastrointestinal problems. We have been doing chelation therapy along with NAET and that also coincides with the apparent "tolerance" dd is displaying.

I truly do not want to put her at any risk when it comes to this. But since the NAET therapy has been so incredibly successful with bringing the other foods back on the menu, I felt that I had to at least check it out. And now that I have, I am more confused than ever! There is one known case of Celiac's in my family and I suspect my mil is wheat intolerant. (Hence, part of the reason I have no interest in going back to our "regular" diet). Any thoughts?

[lovegrov]

First, gluten sensitivity and celiac are not allergies. Some celiac experts think gluten sensitivity is only an early phase of celiac. Even if NAET works on allergies, sensitivity and celiac are not allergies.

It's possible that your child reacted to wheat first and not the others because the others have less of the offending proteins. The longer she was off the wheat the more sensitive she got to the others. As for the mixed result on trying gluten again, there are people with sensitivity or celiac who react different ways at different times. Of course I can't say that's what's happened with your child. Obviously I can'ty even say she has celiac, but a family history makes it more likely.

If she DOES have celiac, many people are able to start eating things they were "allergic" to once they've been gluten-free for a while. This happens quite frequently with dairy because once the villi start healing, they can deal with the dairy. This is not uncommon at all. I don't know if that's true with eggs or not, but it's possible your daughter is simply improving from not eating gluten.

From everything I know about it, I don't personally believe that NAET works. Chelation appears to be somewhat accepted for some things, but even that is subject to some quackery. I'm not one who scoffs at all alternative medicine, but I really do think the NAET is dubious at best.

As I said, there's no way for me to know if she has celiac or sensitivity, but the fact she improved when she stopped eating it and the fact there's a family history raises the chances.

richard

[Jnkmnky]

Celiac disease is a life-long intolerance to gluten. It's an auto immune disease. If your child had a gluten problem.... and not just a "wheat" problem.... It was more than likely Celiac Disease all along. There are 200 + symptoms associated with celiac disease. It looks like many things and is often misdiagnosed, though QUITE common with accepted statistics claiming 1-133 people have it. If she has celiac disease, she's only one of the few people who are actually diagnosed, NOT only one of a few people who actually have the disease. She'd be one of the lucky ones.

You seem to have (in my opinion) ventured off into some kind of medical fantasy land with Oompah-Loompahs calling themselves doctors. You would be doing yourself a huge favor by investigating Celiac here a bit, and getting a new doctor who actually knows about celiac disease. When a person has undx celiac disease, all sorts of problems occur if the gut is also leaky. Lots of foods become problems due to the leaky gut. If you remove gluten and heal, you will often find the allergic foods don't cause anymore problems. Dairy is a problem because the villi get flattened, the latase enzyme can't be produced and a dairy intolerance arises. This goes away in 6-9 months on average as the villi regrow.

[shayesmom]

Even if NAET works on allergies, sensitivity and celiac are not allergies.

It's possible that your child reacted to wheat first and not the others because the others have less of the offending proteins. The longer she was off the wheat the more sensitive she got to the others. As for the mixed result on trying gluten again, there are people with sensitivity or celiac who react different ways at different times. Of course I can't say that's what's happened with your child. Obviously I can'ty even say she has celiac, but a family history makes it more likely.

If she DOES have celiac, many people are able to start eating things they were "allergic" to once they've been gluten-free for a while. This happens quite frequently with dairy because once the villi start healing, they can deal with the dairy. This is not uncommon at all. I don't know if that's true with eggs or not, but it's possible your daughter is simply improving from not eating gluten.

From everything I know about it, I don't personally believe that NAET works. Chelation appears to be somewhat accepted for some things, but even that is subject to some quackery. I'm not one who scoffs at all alternative medicine, but I really do think the NAET is dubious at best.

As I said, there's no way for me to know if she has celiac or sensitivity, but the fact she improved when she stopped eating it and the fact there's a family history raises the chances.

richard

Thanks for your prompt reply!

I guess I am a bit confused on her symptoms because when I read posts here, most everyone seems to have a very distinct and immediate reaction to a gluten exposure. I understand that Celiac's presents differently in everyone, so it makes it a bit tough to compare one case to another.

As for NAET....I can't blame you for having doubts. It took me a full 7 months to weigh it as an option and even then I went in extremely skeptical. I have been lucky in the respect that my dd never had anaphylactic responses to her allergens and so I have been testing my dd's allergies along the way in this therapy. As for eggs, I gave dd some gluten-free brownie batter with raw eggs in it two days before NAET and she had diarrhea within 3 minutes and was hyperactive for 2 full hours (dh warned me NEVER to do that again ). Two days after the egg treatment session, I was told she had "cleared" the egg allergy and so I mixed up another batch of the brownie mix for her to try. She did not have diarrhea and did not become hyperactive. She has had eggs ever since with no incident. She even requests them now whereas before she would tell me that they hurt her tummy and would refuse to eat them. I've done the same thing 2 days before each NAET treatment in regards to checking for allergic response and then again after she has supposedly "cleared" the allergy. There is a VERY marked difference in how she reacts or does not react. I find it bizarre to say the least. But I am trying to look at this objectively and confirm the allergy as well as response to therapy in a rational way. But the gluten thing has me torn. Quite honestly, I went into the gluten/wheat treatment with the attitude that it would be a wasted session. But I still tested before and after and got some bizarre results. So that's why I posted the question.

We are back on gluten-free at this point. To be honest, I am scared to death of the ramifications of messing with gluten should my dd have Celiac's Disease. But I really wanted to know if other celiacs have had similar experiences where they hadn't been glutened in a long while and did okay with a small exposure once or twice.

[Jnkmnky]

Thanks for your prompt reply!

I guess I am a bit confused on her symptoms because when I read posts here, most everyone seems to have a very distinct and immediate reaction to a gluten exposure. I understand that Celiac's presents differently in everyone, so it makes it a bit tough to compare one case to another.

As for NAET....I can't blame you for having doubts. It took me a full 7 months to weigh it as an option and even then I went in extremely skeptical. I have been lucky in the respect that my dd never had anaphylactic responses to her allergens and so I have been testing my dd's allergies along the way in this therapy. As for eggs, I gave dd some gluten-free brownie batter with raw eggs in it two days before NAET and she had diarrhea within 3 minutes and was hyperactive for 2 full hours (dh warned me NEVER to do that again ). Two days after the egg treatment session, I was told she had "cleared" the egg allergy and so I mixed up another batch of the brownie mix for her to try. She did not have diarrhea and did not become hyperactive. She has had eggs ever since with no incident. She even requests them now whereas before she would tell me that they hurt her tummy and would refuse to eat them. I've done the same thing 2 days before each NAET treatment in regards to checking for allergic response and then again after she has supposedly "cleared" the allergy. There is a VERY marked difference in how she reacts or does not react. I find it bizarre to say the least. But I am trying to look at this objectively and confirm the allergy as well as response to therapy in a rational way. But the gluten thing has me torn. Quite honestly, I went into the gluten/wheat treatment with the attitude that it would be a wasted session. But I still tested before and after and got some bizarre results. So that's why I posted the question.

We are back on gluten-free at this point. To be honest, I am scared to death of the ramifications of messing with gluten should my dd have Celiac's Disease. But I really wanted to know if other celiacs have had similar experiences where they hadn't been glutened in a long while and did okay with a small exposure once or twice.

I asked this question recently because so many adults dxed later in life as Celiac, have additional problems. My son, dxed at 3, has NO other problems or food allergies or intolerances. I was wondering if the HYPER sensitive, older, later dxed Celiacs attributed their health to a late dx. I wondered if my son might be able to be accidently glutened, (very minute amount) and not suffer as the other group does from a mere trace amount. There's no answer, no study being done, but I would suspect that the younger the dx is reached, the BETTER off, STRONGER you will be.

[Rachel--24]

So here's where I get confused. According to the NAET practioner, my dd has "cleared" her gluten sensitivity. I have tested dd a few items with gluten with mixed results. We've only tried 3 or 4 things and twice there was no reaction. Would that be possible with true Celiac's? It seems to me that ANY amount of gluten should set her off so why would she not react those two times? Usually, we got the instant D (within MINUTES) and hyperactivity for a few hours. In the two instances where there was no reaction, there was literally NO reaction.

My doctor gave me a handout with info. about gluten intolerance/celiac.

This is part of what was on there.

Eliminating gluten from your diet will not cause your body to become less sensitive to gluten. All the current research shows that the reaction to gluten is caused by a genetic inability to produce the enzyme that digests the gliadin protein. The sensitivity does not lessen or disappear over time because of the removal of gluten from your diet. This varies from other allergies because the sensitivity to most other foods does diminish after being off the offending food for some time. Therefore, it is highly recommended that a person with gluten sensitivity stay off gluten indefinitely.

After being off gluten-containing foods for a while one thing that can change is the reaction a person experiences to eating gluten. The reaction can diminish and the symptoms a person feels could be dramatically reduced when eating gluten. However, both research and clinical experience has determined that the reaction to gluten is still occurring and it could be weeks or months after returning to a gluten-containing diet before any negative changes in the person’s health is observed. But it will occur.

He also said this is true whether the person has Celiac or non-celic gluten sensitivity. He said the symptoms can be the same for both but only Celiac results in the destruction of the villi and both conditions require strict gluten-free diet. Celiac or not there are still health risks involved.

[shayesmom]

I asked this question recently because so many adults dxed later in life as Celiac, have additional problems. My son, dxed at 3, has NO other problems or food allergies or intolerances. I was wondering if the HYPER sensitive, older, later dxed Celiacs attributed their health to a late dx. I wondered if my son might be able to be accidently glutened, (very minute amount) and not suffer as the other group does from a mere trace amount. There's no answer, no study being done, but I would suspect that the younger the dx is reached, the BETTER off, STRONGER you will be.

That would make perfect sense. I do think that we "caught" this thing pretty early (no thanks to our pedis or GI) and I've also wondered if perhaps my daughter was really spared a lot of the damage that other people accumulate by not knowing about glutens and ingesting them for decades before being diagnosed. So far, I haven't seen any studies done on that aspect either.

As for the additional problems of food sensitivities in adults dxed later in life, I don't know. My daughter seemed to get hit by them in a strange pattern. She had been completely gluten-free for 4 or 5 months when the dairy allergy presented itself. So I can't really blame that on Celiac's. Same thing with eggs. Soy was pretty much in line with wheat as far as reactions and timeline. I would have thought that the dairy allergy would have presented back in the time we were NOT gluten-free, not months afterwards. And believe me, the reactions she began having to these foods were not something I could have possibly overlooked if they'd been there before. One day, she just started rashing out. There was no increase or decrease in the amount of dairy we had been giving her. Out of nowhere, ANY amount was too much. Probably a bit of an enzyme deficiency but also tested positive for whey with the RAST test.

I considered leaky gut syndrome as a possible culprit. But once again, we'd been gluten-free by then. I did start giving dd probiotics a few months ago and that has seemed to help somewhat. It's just difficult to ferret out all of these specific allergens and then separate them from what could be an autoimmune disorder. And the three pedis and two GI docs we have seen have been utterly pathetic. We'd still be testing if I hadn't have pulled the glutens on my own. But I was DONE with seeing my child in pain and I hadn't slept a full 6 hours for over a year. lol!! And I also cannot say how much it INFURIATED me that an acupressurist was able to help me via the telephone (never having seen my dd) in 20 minutes whereas 3 pedis who had seen my dd every other week for 6 months straight hadn't gotten anywhere. The pedis had all told me that I needed to feed dd MORE pasta and bread and that it was obvious I was not feeding her enough carbs. They kept on repeating that even after I told them that I was POSITIVE there was a food issue going on and that specifically, I noticed changes in behavior after having cream of wheat. I also asked if it was normal for her to have 7-8 BMs per day. I was told that was normal, not once, but THREE times! So in defense of the oompah loompahs.....I still have to give them some credit for having ears, being able to listen and getting us on a better track in relatively short order. The acupressurist never charged me for the consult. I'm just trying to make the best with what I've been given to work with.

[shayesmom]

My doctor gave me a handout with info. about gluten intolerance/celiac.

This is part of what was on there.

He also said this is true whether the person has Celiac or non-celic gluten sensitivity. He said the symptoms can be the same for both but only Celiac results in the destruction of the villi and both conditions require strict gluten-free diet. Celiac or not there are still health risks involved.

Thanks Rachel. I appreciate the time you took to post the info for me. I think that at times it gets a bit overwhelming dealing with the various food issues and the fact that we have what appears to be autoimmune disorders, food allergies AND intolerances going on all at the same time. I've been pretty much "on my own" in dealing with this and at times feel like Tom Hanks in Castaway talking to Wilson the volleyball. I read your post on your GI doc and I must say that he sounds awesome. The first GI doc that I went to told me that my dd could "outgrow" the gluten intolerance and so did one of the pediatricians we saw. I guess that pretty much confirms my suspicion that they were clueless and I am glad that we stopped going to those people. After all of the money that we spent on tests and invasive procedures, it is really depressing that we still received such bad information....and this is a nationally recognized hospital. My dd was so incredibly terrified of doctors by the end of it that she'd start crying if someone wearing a white coat would talk to her. She also gets hysterical when we go to office buildings and someone shuts the door behind us in a room. If nothing else, I looked at NAET as giving us the opportunity to neutralize her fear of medical professionals. It took 7 sessions, but she has finally stopped screaming when we go into the exam room and is finally interacting with the staff there. I look at this as a fairly inexpensive form of psychotherapy as well! LOL!!

Did anyone's doctors ever mention checking zonulin levels? I had read that there were a few researchers who stated Celiac's was also a condition where zonulin (a human protein) was found in markedly increased levels and that this was part of what contributed to leaky gut and gluten getting through the intestinal tract. There is talk about a pill being on the market by the end of 2006 to help celiac's eat "regular" foods. Open Original Shared Link

[momonamission]

Hi! I am very new here..... We just had a NAET session today and I was told that when you are cleared, that you are cleared of your brain - body reacting to it. If you expose yourself to it alot, you may react again in the future. It is so confusing! Please bare with me! My son is not allergic to wheat or the gluten, but he has Celiac. It can clear the allergy, but not necessarily the Celiac reaction. So basically we may be helped by the NAET in the way of when little amounts slip into our bodys we may not have an immediate reaction. Did this make any sense?????? We were allergic to corn. We were cleared of corn, but we need to take it easy on it and not go and eat a ton of it. A clearing isn't going to be 100% if you go overboard.

[Jnkmnky]

Hi! I am very new here..... We just had a NAET session today and I was told that when you are cleared, that you are cleared of your brain - body reacting to it. If you expose yourself to it alot, you may react again in the future. It is so confusing! Please bare with me! My son is not allergic to wheat or the gluten, but he has Celiac. It can clear the allergy, but not necessarily the Celiac reaction. So basically we may be helped by the NAET in the way of when little amounts slip into our bodys we may not have an immediate reaction. Did this make any sense?????? We were allergic to corn. We were cleared of corn, but we need to take it easy on it and not go and eat a ton of it. A clearing isn't going to be 100% if you go overboard.

My first thought on all this NAET stuff is... What do you pay for this program? This all sounds like it has the potential to be a costly, ineffective goose chase, of sorts. JMO. Being gluten free is way easier than chasing down phantom extras with an unproven method. JMO.

[shayesmom]

Hi! I am very new here..... We just had a NAET session today and I was told that when you are cleared, that you are cleared of your brain - body reacting to it. If you expose yourself to it alot, you may react again in the future. It is so confusing! Please bare with me! My son is not allergic to wheat or the gluten, but he has Celiac. It can clear the allergy, but not necessarily the Celiac reaction. So basically we may be helped by the NAET in the way of when little amounts slip into our bodys we may not have an immediate reaction. Did this make any sense?????? We were allergic to corn. We were cleared of corn, but we need to take it easy on it and not go and eat a ton of it. A clearing isn't going to be 100% if you go overboard.

Thanks for the reply. It did make sense too . What made me interested in doing the NAET was a series of coincidental conversations that I had with parents of children who had food allergies and were helped by NAET as well as cranio-sacral massage therapy. One in particular struck me as the parent was a heart specialist at the Cleveland Clinic whose son had Autism along with several food allergies and complete gluten intolerance. He was actually going "back to school" in order to learn how to do the therapies as his son improved dramatically with it and he wanted to be able to work on him at home. I spoke with 3 different people all in completely random locations (the MD was in the gluten-free section of Wild Oats...lol!!) Also, the clinic where we go for NAET really did wonders in assisting my terminally ill father (not with NAET but with nutritional IV supplementation, diet, exercise and oral supplementation). I found it amazing that they recommend that ALL of their patients avoid glutens and casein along with a few other foods. But if you look at the degenerative diseases that these substances are linked to, I think it's a very intelligent precaution to take.

I probably should have stated up front that in NO WAY was I ever told that glutens would ever be on the menu. But I was told that we could see a reduction in symptoms for the rare trace exposures. I have had my doubts about the therapy and originally only planned on going to 4-6 sessions to see if it helped with allergies but moreso to see if it helped with my dd's fear of all things medical. We had absolutely nothing to lose. I was pretty shocked when the egg allergy disappeared right away. And as awful as it might sound, I really have been "testing" things out as far as trying to see if the therapy really works. I even sabotaged one treatment and didn't do the avoidance of the allergen to see if the therapist would notice or if she'd just proclaim us as "cleared". That bit of subterfuge cost me an extra appointment.

What has really confused me most on this symptom post is the extreme reactions some here suffer from that last for 7 days or more. And reactions to wheat dust, contact with dog biscuits, shampoos....it makes me wonder what the heck is up with my dd as she has had those kind of exposures without incident even before NAET. She is sensitive, but not to the extreme. So I wonder if maybe she was just caught very young and damage was of minimal impact or if perhaps her sensitivity is just not the same. Or maybe there were other allergens involved that I was not completely aware of. Who knows! And since the pedis and GI docs in my area are pretty poor, I am thinking of doing the Enterolab test to possibly shed some light on the problem. I have one PCP who will definitely help me with this so I'll be scheduling an appointment next week.

I guess that ultimately, I should count my lucky stars that she's not severely affected by this so far and leave it at that. I don't find the gluten-free diet to be particularly difficult (once I found some crunchy gluten-free foods that weren't raw veggies). And really, I've done enough reading on cancer to know that it's really better to not deal with refined flour, sugar, dairy, red meat, alcohol, tobacco and the like anyway.

I will probably go to the library tonight to check out Nambudripad's book on NAET. I should have read it prior to the therapy but wasn't sure if it was going to be a waste of time. We've been going twice a week for about a month and a half and there really have been some noticable differences as far as reactions and behavior. Plus, I'm now interested to see what else the acupressurist claims dd's allergic to. Strangely she was pretty dead-on with it so far and I only mentioned our top 4 allergens in our questionairre...on purpose.

BTW~ What are you using for a thickener? Arrowroot? Would you mind sharing a couple of pointers with me (as far as quantities for things like soups, broths, etc.). My dd is not allergic to corn (no one is in the family), but I do have friends who are allergic and was trying to convert some of my own recipes to something that would work for them. Please feel free to e-mail me at dmehls@adelphia.net!

[shayesmom]

My first thought on all this NAET stuff is... What do you pay for this program? This all sounds like it has the potential to be a costly, ineffective goose chase, of sorts. JMO. Being gluten free is way easier than chasing down phantom extras with an unproven method. JMO.

Well, all said and done, the complete program can run about $800-900. For some without severe food allergies, it could be much less. Follow up appointments were suggested to me at once every three years. Really, it's not like you HAVE to do it. And if you don't see some results within the first four sessions, there really would be no point in continuing. But then again, I have talked with people who took 3 years to complete the treatment (10-15 sessions on average) and others who did it in a few months.

I understand your point in just being gluten-free but NAET isn't about Celiac's disease. It is about allergies to food and environment. I will be the first person to admit that avoiding glutens is the hardest of dietary restraints to impose, but when you start throwing in eggs, dairy, soy, sugar, yeast, food colorings, additives, pork, chicken, corn, rice, carrots, berries, beans, nuts......well, I'm sure that you see why some would look for a way to be able to have something to eat. There are people out there who have allergies to just about every food imaginable. Some are limited to 3 or 4 food items...PERIOD. That doesn't make for a real high quality of life. And unfortunately, conventional medicine has no options available for these people. You simply have to avoid the food. Everyone here knows that this is easier said than done.

As for being an unproven method....all new methods are unproven at some point in time. Vitamin C to cure scurvy was considered a "radical" approach and was banned by the medical establishment at one point in time. And this "therapy" poses absolutely NO health risks. There are no pills, no injections, no scans. It does no harm. I know it all sounds far-fetched. But so help me, I have absolutely NO OTHER explanation for why my dd's allergies to certain foods would disappear in the space of 4 days time. Food allergies do not disappear that quickly. I'm not talking about glutens. I am talking eggs, food additives, pork, chicken, beans, corn, etc......all things that affected my dd tremendously prior to this treatment. We even finally have gotten past the instant diarrhea with food colorings and artificial sweeteners.

So in a nutshell, desperation is what prompts some to look into NAET. Results keep people going back and telling others about it. It has been difficult even getting appointments at our clinic as so many people are turning to alternative therapies for chronic and degenerative problems. The NAET schedule is booked solid. Even the mayor of the city is going as she said that it has lessened her anaphylaxis to peanuts (she can now touch them without going into shock). So it's kinda hard to pass up this therapy when you speak to people who have been helped by it. I guess it's about hope.