Dr. Hive A question about food intolerance testing.

[Dolphin]

Someone was recently talking to me about food intolerances and allergies. That they could be an underlying reason for a lot of my more minor health issues, as well as why I am having trouble losing weight. (insomnia, migraines, hair loss, etc...)

 

So, I was told this by my pt. She can "sense" that I had food allergies.

 

I did some research and it looks like I might. She told me that the blood test is only 50% accurate. I can not find any information supporting that.

 

Can you tell me what you know about finding out medically if you have food intolerances. I know there are homeopaths, naturopaths etc... out there, but I wanted to find out hard medical science, what is the best way to find out about this.

 

I am in no way dissing the natural medicines, I have a lot of people around me who don't believe in any of that. If I have a food intolerance, like gluten (and it looks like that is a possibility) I am going to need my extended families support. So I want to get tested in a way that they are going to be supporting me rather than making a joke about me "thinking I have a food allergy because someone waved a wand over me" type of comment. Oh, and my families attitude is not up for debate, it is what it is. I can not change people, just the way I react to them.

 

Thank you.

 

Nicole

[TeacherZee]

I think it is often done through elimination diets. You remove what you think is causing the problem from your diet for a week or two. If you feel better it is likely that it was the culprit. You can put the item back in, if the symptoms return then you are pretty sure.

[Dolphin]

Thank you.

 

I LOVE you avatar. My mom used to do that one to us all the time.

[TeacherZee]

You're welcome, and thanks :D

[celticmom]

I don't know how often it is done anymore but I had skin testing done as a child. This was done by an allergist in his office. I was treated with desensitization shots twice a week. However, the testing was painful time consuming and expensive. The shots were also expensive. An elimination diet would be much cheaper.

[Celia]

I have no idea. I just got testing done through the naturopath, and was planning on discussing the results with my son's pediatrician. He and I supposedly both have allergies to wheat, gluten, dairy, and eggs. That's a lot of changes. I've began changing my own diet, and I do feel better, for what it's worth. Sleeping better, and no longer having episodes of extreme exhaustion in the afternoon. Less stomach aches too.

 

But i totally hear you about the family support thing. I'm currently struggling with that a lot, which is one of the reasons I'm going to ask the pediatrician about it.

 

Our naturopath did use a blood test to determine our intolerances, although from my research it's not completely accurate. I did, however, get my adopted child tested as well. Not because I thought she had any issues with food (she didn't), but more as a control group. And her test showed her as just fine, but you could definately tell that my sons and I are related by blood!

[Tammy (TX)]

I understand about needing "proof."

 

For gluten, I had two tests that showed up positive (or borderline positive.) One was a saliva test called the Adrenal Stress Test, another was a stool test. These tests are not only for gluten sensitivity, but it's just a portion of them. I don't know if these were the exact brands of tests, but they were similar.

 

Once I knew I was gluten sensitive, I had a blood test to test for other foods that are commonly cross-reactive wtih gluten. Cyrex Cross Reactive Foods. I believe Cyrex has tests that are only for gluten, as well.

 

Past that, I've figured out the rest through elimination diets. My list of food sensitivities is looooong but I feel so much better when I don't eat them.

 

The testing can get expensive - not one of mine were covered by insurance. I have used the lab that I linked to and I was happy with their customer service. I don't believe you need doctor's orders to have the tests run.

 

Good luck finding out what's bothering you!

 

Editing to add: I think some of my family felt like yours. They thought I was going to quacks and "witch-doctors." Now that I've been off of the offending foods for about a year and a half, they see how much better I feel. I'm at a normal weight for the first time in a long time and that seems to be the biggest thing they notice. A few of them are starting to believe me, I think, lol. Besides, I tell them that if my feeling so much better really is just the placebo effect, I'll take it. ;-)

Edited January 23, 2012 by Tammy (TX)

[Dolphin]

Thank you all. I am hoping that my internist refers me to someone (that way I can say Dr. SO and SO referred me) Any other advice before Wed would be great. Thank you for answering my question and not sidebarring:lol:

[Amber in AUS]

I was just talking to Possums paed about this as we suspect wheat and dairy intolerance. The Drs daughter is ceoliac so she has a particular interest in that area. She said there is a genetic test for ceoliac. 30% of people have 1 of the 2 genes for ceoliac. Of those people only 1% are symptomatic. So if you already have the symptoms you could have the test and if you have the gene then that would confirm your thoughts.

 

She also said that other tests like endoscopy and biopsy could only be done whilst you were eating gluten in your diet as they are looking for inflammation and or antibodies.

 

We don't have a plan for Possum yet, but he is on a restricted diet. We are waiting to see the next Dr to get some testing underway. I also have a family who want 'real' evidence that there is a reason to restrict ones diet.

[LynnG in Arizona]

I would at least start with the "mainstream" medical tests that will involve a blood test and/or an upper endoscopy. They should almost certainly be covered by medical insurance, and they are widely accepted within the medical community as being proof of Celiac disease. Do make sure you stick to a regular diet until you have these tests.

 

In layman's terms, these tests have a low rate of false positives. So if you have Celiac disease according to one of these tests, well, you probably really do have Celiac disease.

 

Unfortunately, these tests do have a high rate of false negatives. Or to put it more accurately, many people with some form of gluten intolerance have perfectly normal blood tests and upper endoscopies. My 20 year old daughter is one of them. All we know, after several years of trial and error and 2 rounds with 2 different GI doctors, is that she is much healthier on a gluten free diet. She used to be dangerously thin, have crippling abdominal pain, nasty bathroom issues, and migraines. All of these issues stay away when she's on a GF diet.

 

I know there is the private stool testing through Enterolab. We have not had that done because they apparently have an incredibly high positive rate. Or to put it another way, their tests nearly always come back positive. Even when you adjust for the self-selective nature of their business (only people who suspect they have gluten intolerance are likely to use them), it seems suspiciously inexact.

 

So much of this is still unknown. I am just now seeing reports in medical journals that are introducing doctors to the idea of "Non-Celiac Gluten Intolerance" and other classifications (my husband is in the profession). We are sure this is what our daughter has.

 

I wish you the best in getting to the bottom of your health issues!

[jplain]

I do believe in IgE testing of blood for the top 8, to rule out true allergies.

I also think it is worth getting the complete celiac panel done before doing a trial elimination of wheat/gluten.

 

Beyond that, I'd only recommend elimination diets, diaries, and challenges. If you have no idea where to start eliminating, post and I'm sure we'll be able to offer some preliminary suggestions.

 

IgG testing of blood for food sensitivities, IMNSHO, isn't ready for prime time. There's no consensus on what, if anything, IgG against foods actually means. Personally I believe that when you get a positive IgG, it means you recently or frequently eat that food AND your intestines are more permeable than they should be. Eliminating the food isn't likely to seal up your gut, and if the list is long, it can be ridiculous to try to eliminate everything. Those tests are also hugely expensive, and usually not covered by insurance. Here's an article that contains other concerns too, many of them dealing with the questionable methodology of the tests: IgG Food Allergy Testing by ELISA/EIA: What Do They Really Tell Us?

 

I know there is the private stool testing through Enterolab. We have not had that done because they apparently have an incredibly high positive rate. Or to put it another way, their tests nearly always come back positive. Even when you adjust for the self-selective nature of their business (only people who suspect they have gluten intolerance are likely to use them), it seems suspiciously inexact.

:iagree: Yes! A couple years ago I spent several hours cataloging every result I could find that people had posted online. I was shocked.

Edited January 23, 2012 by jplain

[Lisa in the UP of MI]

My youngest two are sensitive to dairy. This was determined by watching their symptoms after they ate certain foods. We have not had any tests done.

 

DH had a blood test done in November for celiac disease. It came back negative but on the high side of normal. He began a gluten-free diet shortly after he got the results back. Last week he tried eating gluten again and was miserable. He didn't even last the whole week. So now he's back to being gluten-free.

[Dolphin]

Thank you, I feel much better prepared for my appointment