What Is The Recommended Test For Food Allergens? Food Journal Isn't Cutting It Anymore..

[ezgoindude]

Good Evening yall,

 

    So for now I guess you would refer to me as undiagnosed (been working on this for almost 6 months)  and my doctor is really trying hard to give me a diagnosis, were still waiting on some (more!) blood work....

In the meantime I was on an elimination diet but it seems very difficult considering really no matter what I eat I'm generally the same, I've only been gluten free for 3 months and although I feel generally much healthier I'm sure something is still messed up as my bathroom breaks and general body weight continue to be a hit or miss.

I'd like to heal my body as efficiently and quickly as possible, and am nervous that I could be intolerant to other things...(stopped dairy as well, trying to avoid all corn and soy but that is a toughie)

 

 

 

Is there a preferred allergen test that is more effective than another?

 

I heard they are usually expensive and I want to make sure I'm not getting spun in circles like my confused gastro is doin....

 

 

 

Any personal advice/ stories/ experiences would be incredible!  This forum reminds me that these symptoms aren't "all in my head"

[IrishHeart]

Allergies are not the same as food intolerances. The symptoms are very different and may involve anaphylaxis.

 

Celiac disease is not a gluten allergy, even though many people (incorrectly) use that phrase. It is an autoimmune disease. 

 

Allergies are IgE -mediated and you should see an allergist/immunologist for testing (although those tests are considered by some to be unreliable)

 

Food intolerances or gluten sensitivty--well, there are no valid tests at this time for gluten sensitivity and food intolerances, so I am afraid if you were to buy an expensive online test kit, you would be wasting your money.

 

If you were tested for celiac disease while you were gluten free, the test result is invalid because you have to be consuming gluten for the body to mount an autoimmune attack and produce antibodies. So, that test result may not be accurate at all. Your gastroenterologist should have told you that. Sorry.

[CaliSparrow]

I went to an MD who specializes in Functional Medicine. This was about eight months after going gluten-free. At that point, I had not experienced much improvement, however, if I ate a crumb of gluten, it was as if an invisible troll would jump out of the bushes and beat me for days. It was a pretty horrible experience to have continued illness and NOW add regular beatings to the list.

I took the food intolerance tests. Insurance used to cover it but they stopped in 2012 so it was very expensive. Within days of eliminating my intolerant foods, my years-long inflammation went away. I had been in so much pain that pulling the sheet up over my shoulder in the morning was excruciating. This all but disappeared after eliminating those foods and it was the fastest improvement I've experienced to date.

I can't say if I'm healing any faster, but the inflammation in my arms and legs which was so crippling has all but disappeared. If I reintroduce a food I'm intolerant to, the inflammation is there again.

Something I wish I'd known beforehand is to not eat in restaurants for the first year. That would have made things easier.

The best of luck on your healing journey!

[kareng]

I went to an MD who specializes in Functional Medicine. This was about eight months after going gluten-free. At that point, I had not experienced much improvement, however, if I ate a crumb of gluten, it was as if an invisible troll would jump out of the bushes and beat me for days. It was a pretty horrible experience to have continued illness and NOW add regular beatings to the list.

I took the food intolerance tests. Insurance used to cover it but they stopped in 2012 so it was very expensive. Within days of eliminating my intolerant foods, my years-long inflammation went away. I had been in so much pain that pulling the sheet up over my shoulder in the morning was excruciating. This all but disappeared after eliminating those foods and it was the fastest improvement I've experienced to date.

I can't say if I'm healing any faster, but the inflammation in my arms and legs which was so crippling has all but disappeared. If I reintroduce a food I'm intolerant to, the inflammation is there again.

Something I wish I'd known beforehand is to not eat in restaurants for the first year. That would have made things easier.

The best of luck on your healing journey!

 

 

Most "functional medicine doctors" are not MDs.  

 

I am happy if you feel these tests helped you but there are no medically/scientifically proven tests for food intolerances.  Allergies are different and there are some ways to test for them.

[CaliSparrow]

Mine is an MD. She obtained her MD from UC San Diego, received the Mead Johnson Leadership Award and served as the Chief Resident for Obstetrics at Long Beach Memorial.

If you go to FunctionalMedicine.org there is a listing of doctors who practice medicine under this model.

Thanks though

[StephanieL]

Intolerance testing isn't scientifically sound, hasn't been peer reviewed or accepted in the medical community. Even IgE allergy testing has a super high false positive rate which is why it isn't suggested to test for anything unless there has been a known reaction within 20 minutes to 2 hours of ingesting the suspected allergen.

[kareng]

Intolerance testing isn't scientifically sound, hasn't been peer reviewed or accepted in the medical community. Even IgE allergy testing has a super high false positive rate which is why it isn't suggested to test for anything unless there has been a known reaction within 20 minutes to 2 hours of ingesting the suspected allergen.

 

 

Listen to Stephanie.  She knows a lot about this stuff.

[ezgoindude]

Good Evening everyone!

 

Thank you for your replies, I apologize but I'm sure I did say terms wrong.

 

There is a very high probability I can never have gluten again, and I'm ok that, and have been feeling slowly better the few months i haven't had it. (also no dairy atm until all symptoms calm down)

In the meantime many people have said there is still lingering inflammation, possibly leaking gut, candida, parsisites, etc.... I don't believe I could have, but there are several other foods many people have been pushing me to avoid like:

 

Nightshades? (tomatos and eggplant i think)

Eggs

Soy

Corn

all Grains?

 

I'm not willing to reduce myself to starvation, considering I'm not absorbing too much anyway, but I was hoping to see if there was a test that checks for things that irritate or inflame my guts.

 

The test my gastro doctor said is the "universal" test is they take needles and poke your arms and back and pretty much wait there until your skin freaks out or not.  His opinion is to not get this test as my insurance will not cover and foods that irritate your skin may not irritate your stomach, or something like that. 

 

CaliSparrow, I never thought about restaurants, I'll have to be extra careful.  The only time I was almost reglutened when I went to Texas roadhouse of all places and the waitress points out to ask for no butter spread for my steaks as it has a gluten ingredient.  Whoa

[CaliSparrow]

Intolerance testing isn't scientifically sound, hasn't been peer reviewed or accepted in the medical community. Even IgE allergy testing has a super high false positive rate which is why it isn't suggested to test for anything unless there has been a known reaction within 20 minutes to 2 hours of ingesting the suspected allergen.

Dear Stephanie,

You sound like you have a lot of experience as a moderator on these boards and have probably seen a lot.  Why do people coming to these boards put so much emphasis on getting a diagnosis for food intolerance?  I can understand testing for Celiac.

I know in my case that the testing I did revealed that many foods such as ginger, coconut and other favorite foods (55+) could be causing me trouble.  The reliability of the diagnosis was secondary because I was going to run through many of these foods on the rotation diet and it gave me a prioritized list of the foods I needed to test.  I took these foods out of my diet and my inflammation dropped dramatically.  Without the test, I would have gotten there but it would have taken a much longer time.

Do you find that the search for a diagnosis diverts people from the main goal of getting well as it relates to food intolerances other than gluten?

Thank you for your response.

[StephanieL]

First off, I am not a moderator on this board Just a member.

 

Different people see different reasons to test things out as far as intolerances are concerned.  I understand being sick and tired of not feeling well and the desperate search for ANYTHING that will make them feel better and I think these tests prey on that assumption unfortunately.   I feel these tests relieve people of a lot of money, severely limit ones diet and doesn't get to the issue in many cases.  If you remove 20 foods from your diet, sure you may feel better but the there is figuring out what the real issue is.  

 

The reality is that MOST people with food allergies don't have more than one or two (and even that is unusual).  For 20, 30, 40 foods to cause an intolerance  issue points to either a much bigger issue or grasping at straws for anything to stick.

 

All this to say that the only 100% reliable test is none of them, not even for allergies.  Food logs and trials and elimination diets are really the only ways to figure that stuff out. 

[GFinDC]

Hi EZgoing,

 

I see you have only been on the gluten-free diet for a few months now.  Things seem to be pretty rocky in the digestive system for many people when they first start out on the diet.  Things can go back and forth, better to worse etc for quite a while.  I posted in the other thread to you about elimination diets.  But IMHO you are still too early in the gluten-free diet for an elimination diet to be helpful.  I think it's better to wait 6 months or so to let your body heal some and then consider an elimination diet.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

[StephanieL]

 

The test my gastro doctor said is the "universal" test is they take needles and poke your arms and back and pretty much wait there until your skin freaks out or not.  His opinion is to not get this test as my insurance will not cover and foods that irritate your skin may not irritate your stomach, or something like that. 

 

Just to tough on this, what your Dr is suggesting is known as skin prick tests (SPT) and are for allergies, not intolerances.  This testing along with blood testing for allergies is only about 50% accurate for a positive which is why it isn't recommended to diagnose a food allergy though many Dr's do which is really sad and wrong!  For example, when my son was tested he was positive for the Top 8 EXCEPT wheat (so soy, dairy, egg, peanut, tree nuts, fish and shell fish) plus corn and citrus fruits.  We had seen reactions to dairy, egg and peanuts. So we removed all those plus some others from his diet.  As it turns out the corn, citrus, soy, fish and shell fish were most likely false positives but I didn't know any better at the time to question it. 

 

So as you can see, allergy testing isn't very accurate.  Intolerance "testing" is even less so.  I do agree with what others have said that you are still pretty new to this and it may just take time.  Really detailed food logs can be of the most use if you do see things are still bothering you.  I know that's how we figured out my sons coconut/palm issue.  We kept tabs down to every single think in everything he ate. It was very daunting but it was key in figuring things out in the end. 

 

I will also plug probiotics.  Even after eliminating his allergens and gluten DS still had issues.  After 3 days on a great probiotic he was like a new kid. 

[CaliSparrow]

First off, I am not a moderator on this board Just a member.

Different people see different reasons to test things out as far as intolerances are concerned. I understand being sick and tired of not feeling well and the desperate search for ANYTHING that will make them feel better and I think these tests prey on that assumption unfortunately. I feel these tests relieve people of a lot of money, severely limit ones diet and doesn't get to the issue in many cases. If you remove 20 foods from your diet, sure you may feel better but the there is figuring out what the real issue is.

The reality is that MOST people with food allergies don't have more than one or two (and even that is unusual). For 20, 30, 40 foods to cause an intolerance issue points to either a much bigger issue or grasping at straws for anything to stick.

All this to say that the only 100% reliable test is none of them, not even for allergies. Food logs and trials and elimination diets are really the only ways to figure that stuff out.

Hi Stephanie (maybe you should apply )

Thank you for your willingness to openly discuss this topic

You're right, I was desperate for help when I had the testing done and I hope I don't have a much bigger issue! Before I found this site, I watched the videos of a famous person with Celiac being tested for food intolerances and assumed this was a standard procedure. (Just to be clear, I don't typically follow what famous people do but she was front and center at the time I discovered gluten to be the problem.) Even though my experience with MDs is not stellar, it is an MD who suggested this test.

There really isn't much information out there except I found an NIH-funded article that doubts IgG can reveal sensitivities accurately in IBS: Open Original Shared Link

along with two studies by a NIH-funded medical school using food intolerance testing to prove out their hypothesis that it can help in a couple of areas: self-reported GI disorders - Open Original Shared Link

and obesity - Open Original Shared Link This begs the question, why would an unreliable test be used to prove out these hypothesis? Wouldn't that be a risky proposition at the git-go?

These studies do mention inflammation and that is what I noticed disappear after eliminating the foods. It is an expensive test. I had spent thousands beforehand so it wasn't a stretch to bite the bullet in the hopes it would help and it did. My body was in trouble with all of the inflammation.

I understand the concern about reliability testing and this will continue to peak my curiosity.

[CaliSparrow]

CaliSparrow, I never thought about restaurants, I'll have to be extra careful.  The only time I was almost reglutened when I went to Texas roadhouse of all places and the waitress points out to ask for no butter spread for my steaks as it has a gluten ingredient.  Whoa

Ha ha I KNOW! Imagine all the servers who don't understand where it's hidden or about cross-contamination. Some people find success eating out overtime but for me, eating in restaurants ended up making my year one unforgettable. My husband is gluten-intolerant and not as sensitive and he can get away with eating what restaurants serve gluten-free although he says he doesn't feel well afterwards and prefers eating at home.

I wish you continued health on your journey!

[StephanieL]

I'm not sure why they chose that test but I assume it was to show that removal of foods that showed high IgG levels was't helpful. Here's a little on IgG testing:

 

"I see patients every week who have had IgG testing for food allergy, in which their blood was tested for IgG antibodies instead of IgE antibodies (the antibodies typically associated with allergies). These patients often come in on extremely restricted diets because they had tested positive to so many things. This is no surprise though because a normal immune system is supposed to make IgG antibodies to foreign proteins, and a positive IgG test to a food is therefore a sign of a normal immune system rather than a sign of food allergy. ", the whole article can be found here: Open Original Shared Link

 

I get being desperate. We are still having issues with my son who is 7. Many of his issues I have had to discover by myself and we are still dealing with off blood work and a frustrated Mom. I did several elimination diets when he was nursing but none of them seemed to help because I never removed *all* of the right things at the same time BUT his are actual IgE (can cause anaphylaxis) allergies. Unfortunately immunology is no where hear perfect science at this point.  It's ever changing and evolving and very complicated