Please, I am new and I need answers to questions and advice

[mbeezie]

Hi pinballwizard,

I am a dietitian and if I were looking at your list of food intolerances (without any test results included) I would say you should avoid gluten, dairy, nightshades, sulfites and caffeine. I beleive Enterolab tests are 100% accurate - don't know anything about the other test.

Mary Beth

[pinballwizard]

Here is what my Alt doc thinks:

avoid gluten, and soy, and nightshades. I am going to do the exact opposite (at least temporarily)!
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I am going to eat different possible allergic foods and see if I get a reaction. I am not bought into the idea.

*High-fructose day: Cokes and softdrinks and candy
*Gluten: I just ordered a pound of gluten flour. I can eat for a few days on Gluten and bread and pasta without sauce.
*Nightshades: Potatoes, peppers, tomatos, tomato sauce and egglant day
*Sulfites: grape juice, cocktail cherries, bottled lemon juice, sauerkraut with sausage, dried fruits (not raisins or prunes)
*Dairy day: Milk, Cheese, etc.
*Soy: Japanese Edamame, Sushi, soy sauce, soy milk and mochi day.
*Gout day: Foods that promote gout. steak, anchovies, aspirin, protein spinach... My mom told me to consider it.

I think my biggest reaction is working out at the gym really hard and that is causing all the joint and tendon pain. Then, it is high fructose corn syrup and orther simple processed sugars, then Gluten and nightshades tied for 3rd.

I will start with the foods I think I am not allergic to and work towards things that are more suspect. I am essentially going to do the reverse order and start with "gout day" tomorrow and work my way up the list.

This could save me a lot of time. Am I missing anything here? How long do you think it will take to get a reaction? I should journal everything. If I get a reaction, I have to wait until the reaction has subsided before I move onto the next group of foods.

I am predicting little or no response from Soy and gout promoting foods. I am expecting only bloating from dairy particularly whole milk. I am expecting joint problems from the sulfite diet....The more I think about sulfite foods, the more I am thinking this might be an issue. The only way to know is to try it in moderation.

After I finish the major groups, I will try some of the particular "allergic" foods from the USBiotek test that I am not already trying out.

I will eat 4 bananas one day.
A 2 cups of cranberries another day
A cup of pecans on another day
ground nutmeg etc
vanilla extract etc
Baker's yeast

I am guessing I will only react to the cranberries and the vanilla.

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Are there any other allergy diets I should do? I am thinking artificial sweeteners are also suspect... I am thinking artificial sweetener day.

[pinballwizard]

This does not mean I will not do an elimination diet for 3 months for certain items. I will definitely eliminate gluten for three months and sulfites.

I will decide on how much to cut back on the others later.

[Lucy]

Hi there,
About the systemic tendonitis. I had it as one of my main symptoms. It went away in three days off of gluten, along with generalized body pain and swelling.
The bi-products of all the immune reactions when this stuff gets as bad as mine was, damages every system in the body. That's why, once the antigen is removed, those things go away. Now, my sister can hardly believe how limber I am. Before I was stiff as can be! It was miserable. Now it's gone! I never dreamed those symptoms were related to my gut problems, but they were.
Yours, Luce

[pinballwizard]

Hi there,
About the systemic tendonitis. I had it as one of my main symptoms. It went away in three days off of gluten, along with generalized body pain and swelling.
The bi-products of all the immune reactions when this stuff gets as bad as mine was, damages every system in the body. That's why, once the antigen is removed, those things go away. Now, my sister can hardly believe how limber I am. Before I was stiff as can be! It was miserable. Now it's gone! I never dreamed those symptoms were related to my gut problems, but they were.
Yours, Luce

This is good to hear. I went to a sports orthopedic surgeon. He told me he has seen my set of symptoms perhaps a dozen times in his life. Half the time its been lymes disease. I have not met someone with tendonitis all over the body. For me, I dont think its just tendons, but soft tissue in general. Its good to hear because it means that I am not alone.

The pain is pretty intense this morning in my wrists and fingers and thumbs.

Before I move on, I just want to fully know what is going on with me.

-Pinballwizard

[faithberry]

First of all, you need to clear your system by eating just a few safe foods for 5-7 days or even fasting. Otherwise, your food testing will never be accurate because the body can masks symptoms until you actually take a good break from any particular food.

Then you only try *one* new food. If you mix up too many foods you will never know what's causing the reaction. Most foods have a mix of natural food chemicals, not just one. If you don't get a reaction after you try a food 2 or 3 times, you can continue eating that food. If you do get a reaction, you need to wait at least 4 days for it to be out of your system before trialing another food.Otherwise, you will never get accurate results. Google elimination diet for some instructions.

I don't think you will get accurate results the way you are going about this. On second thought though, I guess this would be considered a food challenge so it might work if you left enough time between challenges. I know on the failsafe diet challenges for salicylates, amines, and glutamates, you eat the foods for five days or until you get reactions. I don't know how long you wait till you do the next challenge. Just be careful about doing challenges too close together or you won't get accurate results.

My husband didn't believe he's gluten sensitive either after the Enterolab testing. Now he has ulcerative colitis and is off the gluten. Now he believes.

Whatever you do, good luck. Hope it works for you. Seems a lot easier to just eliminate gluten and soy.

[Lucy]

Pinball,

You are correct, it's not just the tendons. As I said before, the by products of all the immune reactions damage every system in the body. I had so much pain that I couldn't tell exactly what was hurting. My tendons tended to get very stiff, so that made it pretty obvious there were tendon problems. The bone pain may have been related to loss of calcium due to the malabsorption issue. Who knows what all else between the tendons and the bones was hurting -- just all ran together, and it was sort of like having a bad case of flu ALL the time.

Faith,
Well said!

Yours, Luce

[tex]

FWIW, when my symptoms first began, reactions were sporadic. I would be sick for a couple of weeks, and then I would be "good" for a while. As time went on, the "good" periods became shorter and shorter, and the "sick spells" came more frequently. I thought that I was the unluckiest son-of-a-gun in the world, to be getting either the flu, or food poisoning, so frequently.

That went on until one day the D started, and wouldn't stop, no matter what I did. That's when I had to face the fact that it was more than just the flu, or food poisoning, and I went to see my doctor, who promptly diagnosed me with colon cancer. Of course, he was wrong, thank goodness.

Tex

[pinballwizard]

....Seems a lot easier to just eliminate gluten and soy.

I spent the last week eliminating and soy and gluten and it did not work. This means one of 2 things. The enterolabs is BS in my case. Or, I am allergic other foods. Or, there are other factors. Or, it will take a lot longer of elimination.

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For about 5 weeks, I eliminated gluten and yeast and my symptoms subsided. Soy was cut down. Processed food was cut by 80%. But, I did a lot of other things too. I worked out everyday, I stopped drinking caffeine. The list goes on. That was when my symptoms went to nothing.

I am sure that there is a food element to my problems. I believe the food element includes more than gluten and soy. Also, I am sure there is a psychosomatic and a exercise component too. There are a lot of moving parts.

To simply say, "well that is simple then, just simply go on a strict elimination diet, follow 'my' elimination rules and cycle through them over a month."

Its like saying to an obese person, "Stop eating all fattening foods, deserts, tasty foods because you would obviously lose weight. Its common sense." Its *SEEMS* easier. But its actually hard. And you often guarantee failure. People need moderation or there body starts to crave these foods even more. Then relapse is stronger and more pronounced. Then you go into overdrive and eat too much of the wrong thing.

Here you are asking me to give something up for your predetermined length of time (my alternative doctor says you need to go 180 days free of the food) which I think may be too long for my willpower at the moment.

I don't disagree with you. I think that this is ultimately the way to go. I just want to do a quick 2 week version of it first. I will need to be eased into it.

Let me give it some thought as to the proper strategy. This is not just a case of no gluten and soy. There are other foods at the top of my list as well as non-food factors. Like I said, when I workout at the gym to hard, my tendons flare up. ALso, when I am depressed the pain is stronger.

Common sense and rational ought to dictate that I should live like a monk for 6 months and abstain from physical exercise and nightshades back in slowly and see what happens. Unfortunately, I don't have monk-like powers and cannot simply do rational behaviors without appetite building to a level I cannot manage. Then, I would know 100%. Well, not exactly 100%. I will know if I live monklike (except for one allergic item) that I am ok. It would take me a whole few more months to see what

This is why diets don't work well for people and everyone who tries strict diets just get fatter. The diets are impossible long term.

Yet, you will still find no shortage of diets on the internet. The diet industry is lucrative. You sell something that no one can achieve over and over again instead of focusing on lifestyle and taste. So, just because I can google elimination diet, does not mean that it will work.

Your body just adjusts and your unconscious drives get stronger. (I am not fat FWIW). In order to eliminate allergy foods for anything beyond a week, It would be easier to find other culinary treats. I don't want to cook. I want immediately ready fast food. I want the food to taste good. I want to be happy eating. I want to spoil my unconscious appetites for good tasty food so therefore is no urge to eat that which I am allergic to.

My point is: "Your mileage will vary." I am not trying to disagree and say you are wrong. I am just thinking that this is not cut and dry. I am glad that you mention your experiences and knoweledge. It will help guide me.

Your mileage will vary. If having an occaisional shrimp and it lands you in the hospital emergency room for anaphylactic shock, moderation is a bad thing.


MY GAME PLAN:

Right now, I am quickly looking for a shot gun approach for multiple allergies, exercises, physical therapy exercises, and psychology. Maybe even the weather is affecting me. I have 2 different companies giving me 2 different allergy results on a variety of items. I want to test my allergies at least a couple times.

So, I am probably going to have 1 day of non-allergic food to space them in between. If my symptoms get worse, I will wait longer. If they stay the same, or get better, I will continue. My adherence is 100%.

After that, I will do an elimination diet with 90% adherence for 180 days plus according to my Alt doc. 100% it will be too hard. The 10% non-adhered foods will be items that passed the first test and would be eaten in moderation. I will also do more physical therapy (stretching, massage, strengthening) and light workouts at the same time.

My suspect foods just arrived via Safway delivery. gotta run.

[Gloria]

Hi Pinballwizard,

I can hear your frustration in your words. Most of us have been in your shoes - some of us still are.

You wrote:

I spent the last week eliminating and soy and gluten and it did not work. This means one of 2 things. The enterolabs is BS in my case. Or, I am allergic other foods. Or, there are other factors. Or, it will take a lot longer of elimination.

I'd have to vote for "Or, I am allergic to other foods," assuming you've been diligent with eliminating soy and gluten. Soy is in many, many foods, including tuna and chocolate. It's apparently a very cheap way to enhance the texture and/or flavor of a product.

It's very difficult to eliminate our treasured food items. I think we go through a period of mourning when we realize that we may never be able to eat something we love again. Eclairs come to mind for me. Some of us fall off the wagon and pay the price. Then we realize that we have two choices: live with the D or live without some of the foods we love.

The process of determining which foods are problematic ranges from easy to extremely difficult. It seems to depend on our genes. You are not a double DQ, so hopefully your list will be relatively short. I could be wrong, but I don't think you would have to be on a full elimination diet for 180 days. I think you would begin to see results fairly soon and would be able to begin adding foods to your acceptable list. However, you would have to follow the diet 100% in the beginning. Otherwise you wouldn't know which food is giving you problems.

Wishing you the best of luck,

Gloria

[Lucy]

Pinball,

Let us know how your system works for you, ok?

All I know is that I'VE been completely free of gluten, casein, soy, eggs, and dietary yeast for right at 6 year now, and eventually did just fine.

I stopped the foods each time before I got the results back to prevent the psychosomatic element, and when my results came back, they matched what I had observed exactly. I was trained in scientific research in my first career, so I set up my own little experiment for the EL tests.

Before I go on to another topic, you could very well be correct when you say that your depression is painful in your body as well as your emotions. Depression hurts!

Now, about the other types of allergy/ sensitivity testing, you are probably talking about different parts of the immune system upon which these others are based.

These parts include IgE, IgG, IgM, etc, and not just IgA which is what EL's tests are based upon. Allergens tend to not understand the value of IgA, at least they don't yet, but they may be beginning to understand the value of it as things are changing. It takes a long time for medical research to actually get from the researchers into the hands of practitioners -- way up in the teens of years much of the time, but it does eventually trickle down as physicians are informed through their journals and continuing ed, etc.

What I was told when I had some testing for antibiotics by an allergen was that one day I might be allergic to one, and the next day not -- that kind of information didn't really do me a lot of good! This was the type of testing done via subcutaneous injections of the antigen/antibiotics.

Mary Beth would be a good person to explain the Ig? basis of the types of testing she is familar with for food allergies. I wonder if she thinks they are very consistent? I know that they can be helpful for alot of people.

Maybe Tex would like to weigh in on this, but I really wouldn't expect a person to have the same foods that they react to in each of the Ig systems of the immune system, although it's probably possible. I'm not sure how common it is, however. That would be interesting to know. EL's tests are much more accurate, albeit with a small margin of error. However, the error rate, I think, is related to false negatives, rather than false positives. Every lab has lab error -- goes with the territory.

The advantage with EL is that the sensitivity is so much higher, thus fewer false negatives than the standard blood tests.

Dr. Fine,M.D. is a board certified Gastroenterologist who did 10 years of research at a GI Center of Excellence at one of the large, urban medical schools, and while there, other of his research was published in the top GI journals as well as New England Journal of Medicine. He left that institution to start his own lab and do further research based on his findings. He has helped thousands of people since that time. Many parents prefer to retest their celiac children with his tests due to the non-invasiveness of collecting the specimens.

Dr. Fine has also established a wonderful camp for families where they never have to worry about anything they eat while there -- it's all safe, and delicious.
He does an amazing job of keeping costs down below what they would ordinarily be, so these families really appreciate that.

Mary Beth can tell you about her experience attending that camp if you like. This camp is recommended by celiac groups across the country, by the way.

The reason I trusted the these tests was because, after I studied the scientific theory behind them, I was pretty much convinced that he was onto something.
That, and the fact that the people on our old board who were seeing improvement seemed to be the ones who were eliminating gluten, and later, many found one or two other things that would produce diarrhea, mainly.

Just because a person can tell obvious improvement, doesn't necessarily mean they will be 100 percent improved, and some will require additional treatment, but much less of it when they are removing their known sensitivities.

This is just me, but even before I suspected other allergens, the gluten removal made me sooo much more comfortable. I had happened to schedule a podiatrist visit to see what could be done to ease the discomfort in my feet, and find out why the lower part of my feet kept swelling such that I could hardly get my shoes on when I got up first thing in the morning. Mind you, I wasn't looking for any of my other symptoms to improve, just hoping that the GI symptoms would improve. It was just a coincidence that after a solid year of constant swollen feet, that after three days of being as gf as I then had figured out how to be, I was in the podiatrist's office, describing how my symptoms had been for a solid year, yet trying to figure out why they weren't there all of a sudden when I was there for my pod appointment.

All I could tell the man was that the only thing I'd done differently was to go on this diet. I remember saying, "You don't suppose it's related," and then, we both said, "Nay!!" I fully expected the swollen feet, and what he said was arthritic symptoms and one other thing, to return the very next morning, but it has NEVER returned and that has been six years ago.

Have to go help put my Mother to bed.

Maybe I'll be able to add something later.
Best wishes.
Yours, Luce

[pinballwizard]

I am going to send my diet this post. You dont have to read it if you dont want to.


11-24-09 -- Personal Food diary
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breakfast: I had a tall half-caf mocha this morning.

Lunch: Quinoa Bowl with sautéed vegetables & greens in ginger miso sauce (v) (gf)
Papaya Enzyme smooothie --pineapple, papaya, agave, lime juice, apple/oj blend
& coconut milk
beet, kale, celery, apple & ginger juice

Snack to yogurts

Dinner: Glass of soy milk –I am used to drinking a small amount with no problems.

One large bag of sour patch kids --- Fructose.


Remarks:
I did not expect to not to mess up today. I wasn’t planning on drinking soy or starting to take a significant amount of fructose that evening. But the candy tasted good so I kept eating it and declared it would be my fructose candy day.

The candy sent me back pretty good. I think its fair to say that I have problems with Fructose. Headache, foot, tendon and muscle pain like a kind of lactic acid build up.

I was still feeling like crap when I was up that morning. Muscle pain in my knees. Tendon pain.

Maybe it had something to do with the previous day at the parents house. I had a tuna fish sandwich with aged cheddar, relish and toast.

Cheesburger , fries ketchup on the drive home with water.

Sugar-free chocolate pudding when I got home.

My legs and tendons were sore from the driving yesterday. Crazy. I lift very heavy weights. But they felt very tight and laticky (lactic acid build up type pain) and tender to massage. Lower part of the legs (below the knee) were sore, On top of the knee, posterior tibialis.

The massage therapist said my knees and ankle were out of alignment this afternoon.

I have had the same cold (stuffy nose and cough) for 6 weeks. Its really starting to get annoying even if it has mellowed some.

I can’t do this exercise for a while. I am just way too beat down. I have to just eat really healthy for a while. That means, no gluten, soy, or sugar.

CONCLUSION: FRUCTOSE INTOLERANT
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[faithberry]

Hey Pinball Wizard,

I know it's hard to eliminate one's most cherished foods, but you are going to suffer way so much more by trying to do the challenge diet...as you seem to have found out on day 1. BTW, muscle tightness and pain is one of my common symptoms. I discovered recently that sometimes joint pain comes on day 2, not day 1 for me. Apples and avocados can make it so I can hardly walk uphill without total pain. I have a hard time doing an elimination diet too. It definitely is not easy.

There's no way you can tell in only a week of elimination if soy and gluten are a problem. It doesn't work that fast. Plus, with the complex diet you are eating, there's a good chance that one of these might be sneaking in there.

In addition to the IgG food reactions, there can be cellular reactions to foods----another whole dimension to food reactions.

The vast majority of *normal* healthy people do not have the biochemical capacity to handle a high level of fructose, so the challenge diet is not necessarily an effective way to determine if you are fructose intolerance. You can get a hydgrogen/methane breath test done via your GI doctor to test for fructose malabsorption. And also you can do a hydrogen breath test for lactose malabsorption. That would be a good way to rule those in or out although the test is not 100%. If you do have fructose malabsoprtion, some people have very strong cases and can only eat small amounts of fruits and vegetables. You can visit the fructose malabsorption australia yahoo group to find out a lot more. Veggies can have excess fructose too:)

Interestingly, fructose malabsorption often goes along with gluten intolerance. You also had a good histamine load in your diet and some high oxalate food in there too plus the soy. So how could you possible know what is causing your problems!

I really hope you find a good way to proceed. I know none of this is fun. If you can't do a total elimination diet, and I totally understand, how about just trying a diet of about 5-10 foods you think might be safe and seeing if that brings relief.

Whatever you do, good luck. Faith

[Rosie]

Pinball, I want to comment on your "cold" that you've had for 6 weeks. The nasal congestion and cough can also be a food intolerance side effect. I had been plagued with asthma and lots of chest and nasal congestion for a number of years until I got rid of all my food intolerances over the past several months. It's just been amazing how the congestion has cleared. My voice had been weak and raspy, and now it's so much better that many people have remarked on it.

I would also second faithberry's comments on tendon pain being associated with food intolerances, as I've noticed that too.

Indeed, it's hard to give up the food we are used to, but feeling well is worth it! I read somewhere that it takes about 3 weeks to break a habit.

Rosie

[Lucy]

PInball,

To be perfectly honest, the diet you posted isn't going to tell you anything.
It is neither gluten free nor soy free. Think you said that you aren't sensitive to casein, or other things according to your EL tests, so you are really fortunate there, if I remembered that correctly.

If you enjoy fructose, then perhaps getting rid of the damage to your gut would enable you, before long, to be able to enjoy sweets again to a reasonable extent. That may be the payoff for your efforts, should you decide to follow through completely. Many of us have found that some of these things, like allowable sweets, are no longer a problem once we've removed gluten and whatever else we've tested positive to.

A good example of things that many of us have been able to add back in is increasingly more fiber. At first, fiber can really wreck havoc if the gut hasn't had a chance to heal by removing the real irritants, particularly the biproducts from the immune reactions to gluten. Soooo...the sooner one gets started, the sooner one can start enjoying foods more. With the few things you test positive for, you should really be able to have alot of treats that many of us only dream about. Probably, it will just be a matter of learning to find out which companies make a certain thing without additives with gluten and soy.
Take your cell phone when you shop and call the 800 no. on the container, just to make sure. There are many, many foods without gluten and soy in them. I'm envious, actually!

Would you believe that I had my LAST little bite of bread on Thanksgiving evening, six years ago. Best thing I ever did!

When you are ready, I know you can do this. You just don't sound like you are ready right now. Holidays are tough. Hang around for support, whatever you do, ok? We all have to find our own way, but we want to follow your journey.

Yours, Luce

There's no point in doing an elimination test if you don't do it consistently.