I am going to let you listen in on an email conversation from a client getting her son and herself tested for various gluten reactions. She was testing Cyrex Labs Array 4 for herself and Array 3 for her son to rule out wheat related antibodies.
Dr. Dan: I received both Cyrex tests. I am not sure if you have received the results yet. Your son is strongly reactive to gluten as you suspected. Now you have something in black and white to support your motherly instincts. Your test wasn't so bad. The obvious offenders are cow's milk, tapioca and quinoa. What doesn't show is how oats and corn affect the wheat gliadin receptors. Let me know if you want to discuss any of this.
Client: I'm sad for my son as it is life changing as I know and things will be more difficult growing up. But, I would rather know the truth and prevent other autoimmune diseases. Since his endoscopy and blood work for celiac were both negative, do you think he could just have a gluten allergy or intolerance other than full blown celiac disease? He has 1 celiac gene (DQ8) which is the least common gene for those with celiac (95% of people with celiac have DQ2).
I think I lucked out because I thought for sure they would be positive for the ones that I showed an allergic reaction to on the skin pricks (chocolate, rice, rye, cow's milk). I think the IgE's (skin pricks) can change over time and they are not lifelong. What I don't understand is how on 5/18/11 I tested positive for Yeast on an IgG test with LabCorp but nothing shows up on here. Also, how could you have celiac and not test positive for Rye, Barley, Polish Wheat and Spelt? Bummer on the quinoa. I had been eating a lot of it before I went yeast-free.
Do you know if reactions like IgG or IgA change over time when you heal your leaky gut (which I'm sure I have) or are those you have for life? I'm thinking I read those are for life.
I was doing casein-free, gluten-free and dairy-free. Guess this means I don't have to be fully casein-free; I can eat casein from a goat or sheep.
Can you explain the oats and corn thing?
Thanks so much Dr. Dan for all of your help on this.
Dr. Dan Once I see Your son's results I may have more questions. Probably should bring those results to the pediatric GI doctor in Reno that told me to have him continue eating gluten!
Later....... I attached the reports.
As far as Your son goes this is good news. He is one of the lucky ones who knows that gluten will kill him.
My guess is that it would have taken 10-20 years for the celiac disease (which I think is his issue) to reach the stage that it would be diagnosable by a normal light microscope biopsy. My grandkids are doing just fine doing the GF diet (18, 13, 9, 3 & 1).
Fortunately, we don't have to differentiate between gluten sensitivity and celiac because the treatment is the same and the consequences of non-treatment are the same. The skin pricks looking for that histamine response associated with allergies are far less reliable at showing us what is happening in the real world than we would like. I agree that the response can change over time.
Unless you notice feeling better being off dairy products, I think that is a minor issue for you according the test anyway. You should be able to get away with small amounts and sheep and goat milk products might be very well tolerated. You will have to experiment to see what works.
I was surprised to find that I reacted to quinoa as well. That explains why it caused me problems. This might be species dependent as some quinoa didn't seem to bother me.
Oat and corn gluten is very similar but not identical to wheat gluten. It can activate the wheat specific antibody pathways even though the body doesn't make antibodies specifically to them directly. This might be what is happening with the barley too.
At this point it appears that gluten sensitivity is a spectrum disorder. Some with minor issues can tolerate wheat once in a while with only minor issues and some will react violently to even small contamination. Now that I know what the problem is I will continue looking for ways to get the body healed but for us adults it is probably too late. I have high hopes for my youngest grandkids and my great grandchildren. My guess is that if a child is not exposed to any gluten before the age of 2 or 3, they probably won't develop the same strong reactions but that will also depend on many other factors that we all deal with such as vaccines, chemical pollutants etc etc.
I will make a note to contact the lab to see how long they keep the blood. Normal is about 3-5 days.
Ideally you would run array 4 now and then again in a year. That would tell you what changed with the GFD. If you had to choose one, I would probably wait a year. Just going gluten free is a big enough challenge at first. Limiting other foods can be done later if needed.
Client: I faxed the results to my son's GI doctor in Reno that told us to continue feeding him gluten after the blood work, genetic test and endoscopy. I will let you know what he says. We are going to Hawaii next Wed. so if you don't hear back from me for a while, that is why. But, I will let you know when we get back. I'll also show our family doctor both of our results.
I was just thinking that when you have a leaky gut all of the proteins get through and you react to so much more early on. Someone told me that after 6 mos. on the GFD her daughter didn't have a reaction to other foods like she did early on. I just wondered if it was worth waiting until there was some healing. If not worth waiting, do you think if I paid for Array #4 that they could run the tests off of the same blood draw they used for #3 (don't know if they keep it) to minimize getting his blood drawn again (he hates it)?
Dr. Dan: This sort of antibody test should make it much easier for a patient to educate their family doctor. Good docs will listen. Others will figure out a way to rationalize why it isn't valid. I will be curious to see how it goes when you present these results. Keep me posted.
As far as further testing, there are two possible scenarios. The first is that the issue for Your son is wheat only and doing the normal GFD will take care of that. The other possibility is that he is affected by other foods that Array 4 tests for as well. I am guessing that most people with Array 3 problems also have some issues on the Array 4 panel too. Testing is all about information. If you can afford the test for the additional information now, I would do it. If you need to wait, you can test for the other stuff a little later.
Client: Thank you for the reports. Also thank you for all of the information. I'm in shock looking at my son's report. I agree it must be celiac. Very convincing to see in black and white. I believe $325 saved his life! The GI doctor in Reno should be able to take this report, along with his genes, and diagnose him with celiac disease. I will not do another biopsy on him. This is proof enough for me. At least he's lucky in that he gets a clear diagnosis so you're not playing the "what if" game. My numbers were always normal but who knows if I would have done this test 2 years ago what it would have shown. Doctors need to start using this test instead of the measley few they do. I will show my family doctor and educate him about these tests as well because he tells me he's constantly dealing with celiac and gluten issues in his patients.
Would you suggest waiting a year or two and then doing Array #4?
Dr. Dan Doing an Array 4 now will give you helpful information about cross reactive foods going forward so I don't see a clinical reason to wait.