Test Results / Cyrex Labs / Datis Kharrazian

[Celiac-in-AZ]

Hey friends,

I am so confused and am curious if anyone here might have clarifying thoughts. (And bear with the long story, it is definitely celiac related.) I've been dealing with brain fog, balance issues, adult-onset ADD and vertigo for 8 years. I've had several normal brain MRIs in that time. About three years ago, I started to develop nerve issues all over my body -- first the pudendal nerve (ugh), then paresthesia of the face and eventually pin pricks and tingling pretty much everywhere. With no diagnosis or path to end the downward spiral, anxiety and depression took over. I could not find any allopathic doctor -- neurologist or PCP -- who could find anything structurally wrong or suggest anything but nerve medication (which I tried and hated). So I turned to a reputable functional medicine doctor who quickly identified the issues as being related to inflammation in the nervous system and started me on an intense protocol of aerobic exercise, meditation, cranio-sacral therapy, tons of supplements, etc. In a year and a half, I conquered the mental health stuff but the nerve and brain issues did not improve significantly. 

I discovered the book "Why Isn't My Brain Working " by Datis Khazzarian and began consulting a different functional medicine doctor who subscribed to Khazzarian's line of thinking. He suggested the Cyrex Labs arrays 2, 3x and 4 (leaky gut, wheat/gluten, and cross-reactivities). My TG2, gluteomorphin and many cross-reactivities (rice, soy, dairy, sesame, eggs, tapioca, hemp) came back so high they were beyond the parameters of the tests. The functional medicine doctor said it it would not be necessary to get a biopsy, this was clear evidence of celiac and that I should also treat the cross-reactivities as if they were gluten. I was so happy to finally have a name and protocol for the mysterious force ravaging my central nervous system, I didn't mind the lifestyle change. Now six weeks after the diagnosis, I can say that my paresthesia and other physical nerve issues have been reduced by 75% and I wasn't even strict about cross-contamination for the first four weeks of that. Brain fog and ADD are unabated -- though I would not expect either of those to resolve quickly (possibly not ever) based on what I've read on this forum and others.

SO! (Here's where it gets confusing.) I finally had an appointment with my GI doc (whom I've always liked and has way fancier credentials than the other doc, a DC) just to get his perspective. He was adamant that the Cyrex Labs tests are not reliable and was aghast that the other doc had jumped to the diagnosis based on those. He was frustrated that it would now be impossible to do the biopsy without me getting back on gluten for six weeks (not gonna happen) so he asked that I immediately get the traditional labs and genetic test done right away and he would re-evaluate from there. He did concede that there's at least a gluten sensitivity and wouldn't comment at all on the cross-reactivities because he's not an allergist and those sensitivities aren't related to a celiac diagnosis. (His words.)

If the new tests come back positive for celiac indicators, it's moot and I'm happy to have more evidence. But if not... what do I believe? I'm done with gluten regardless, but there's a big difference between protocol for a sensitivity and celiac. Not to mention the cross-reactivities. My impression from older threads here and elsewhere was that the Cyrex panels were generally considered the gold standard.  Does anyone active on here have experience/feelings with Cyrex or Khazzarian? Thanks in advance for any ideas or info you think might be relevant! 

One last note to consider: I just found out from my parents that I had been diagnosed with most of the above allergies in 1976 at age 2 and called "likely celiac" (!!) but at age 5 the doctor suggested slowly reintroducing all to see if the disease had "passed".  I had horrible stomach issues for the next 20 years, but then they magically disappeared after a lengthy cleanse. Other than some brief GERD a few years ago, they never really came back. 

[Scott Adams]

Welcome to the forum!

It's very interesting that you may have been diagnosed with celiac disease when you were 2, and then reintroduced to gluten. At that time it was considered a "childhood disease" that many doctors thought some people would outgrow.

The Cyrex lab tests you mentioned would not be the most specific for celiac disease, but may work for gluten sensitivity.

Unfortunately to do any celiac disease testing it would mean a 6-8 week gluten challenge where you eat at least 2 slices of wheat bread a day, and it sounds like that possibility is off the table, which I fully understand. To me it sounds like you already have your answer, and thus don't need a formal diagnosis, which, by the way, may make it harder and more expensive to get private life or health insurance.

I agree that the results of your genetic tests for celiac disease may be helpful, and if you have a marker for it then perhaps this should be enough for you to consider it the cause of your issues.

Here is an article on the blood tests done for celiac disease:

 

[Celiac-in-AZ]

Scott, thanks for the reply and for creating this resource for all of us! 

You have a great point about insurance that I had not considered. That said, I decided more information can only be useful in the long run. For the time being, I'm being extremely cautious about cross-contamination, not eating out, and treating all of the cross-reactivities on the Cyrex panels just as I would gluten -- regardless of what additional testing says. If it turns out to be a sensitivity rather than Celiac, management (especially of cross-reactivities) might be easier down the road. I also have a kid, so a Celiac diagnosis would affect whether we get her tested immediately. 

For now, I feel fortunate to know that my years of bizarre undiagnosable symptoms are likely being caused by food. The path forward is still being drawn, but it's great to be on it. 

[Scott Adams]

My pleasure...btw, I grew up in AZ and went to Tempe High School and then ASU!

[Wheatwacked]

On 7/27/2022 at 4:40 PM, Celiac-in-AZ said:

I also have a kid, so a Celiac diagnosis would affect whether we get her tested immediately. 

Traditionally the estimate is 10% of first person relatives of a diagnosed Celiac has Celiac Disease. A recent study (Mayo or Cleveland Clinic I think) raised that to 44%. Half the population tests positive for Celiac genes, but only 5% of them are diagnosed as having Celiac Disease. Regardless, you should have your child tested now before there are overt digestive symptoms. There are more than 200 different symptoms that may show improvement on GFD. The procedure for NCGS is to first eliminate Celiac then show improvement on GFD. Impossible to know what will improve until you try it. "Got to be in it to win it".

What Are the Symptoms of Celiac Disease?

Increasing vitamin D may keep the Celiac genes under control. 

 Possible Role of Vitamin D in Celiac Disease Onset  The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease (celiac disease) onset.

Vitamin D (40-70 ng) in Children’s Health – review Sept 2014 There is growing recognition of the role vitamin D plays in health impacting the innate immune system to prevent infections and the adaptive immune system to modulate autoimmunity. Other studies are starting to reveal the neurohormonal effects of vitamin D on brain development and behavior, with a link to mental health disorders.

Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective May 2015  Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion, it based its conclusion on the literature that reported that pregnant rodents receiving intoxicating doses of vitamin D delivered pups with altered facial features, supravalvular aortic stenosis, and hypercalcemia. The British Pediatric Association documented hypercalcemia but only in a relatively few infants who had approximate intakes of 1500 to 1725 IU/d of vitamin D. As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D... Dudenkov et al evaluated more than 20,000 25(OH)D measurements performed at Mayo Clinic from 2002 to 2011 and related blood levels of 25(OH)D of more than 50 ng/mL with potential vitamin D toxicity (as determined by the presence of hypercalcemia). They observed that from 2002 to 2011, there was a more than 20-fold increase in the number of individuals with serum 25(OH)D levels of more than 50 ng/mL; however, elevated serum 25(OH)D levels were not statistically significantly related to serum calcium values.

 

[Celiac-in-AZ]

Thanks for the thoughtful reply, Wheatwhacked! There's a lot of great info in this. 

We went ahead and had a celiac panel done on her (she had started complaining of an intermittent sharp pain in her side anyway) and her TTG IgA is 540. We're still in the process of coordinating a biopsy, but... yeah.

I am still awaiting results of my own (non-Cyrex) panels and struggling with whether or not to believe in the cross-reactivities identified on the Cyrex panel (I have since found lots of healthy debate on the topic here) but regardless, it does all seem to be trending toward a Celiac family. 

[Wheatwacked]

You are welcome.  Yesterday I got the results of my fasting labs and there were two things that stood out to me. I stopped all vitamin and mineral supplements July 5. Usually I don't stop because I want to know what I am actually at but this time I listened to @knitty kitty and @trentsto see my status without.  Except for vitamin D, homocysteine and cholesteral and trigycerides my blood tests were all where they should be.

I've been taking 250 mcg (10,000 IU) of vitamim D3 daily since 2015. In 2018 I was at 44.7 ng/ml.  Aug 2021 87 ng/ml. Jan 2022 80.9.  In early July I stopped in order to see how quickly I drop without supplements. My Vitamin D plasma after 3 weeks without is now 72.8 ng/ml. That's 8 ng/ml in only three weeks. At this rate without supplementation I will be vitamin D deficient ( less than 20 ng/ml.  In about 4 months if I don't supplement I will become deficient. It only takes me a few weeks to notice a mood change when I stop taking. Since reaching around 80 ng/ml I have been less reactive to cross contamination. Coincidence? Vitamin D is a hormone, a steroid precurser and we need them to function well. My doctors says go back to taking the 10,000 a day.

 

[Celiac-in-AZ]

That is very telling, indeed. It helps me a ton to read the accounts from you and others who've been navigating these waters for awhile. 

I have been taking 6,000 IU of D3 daily for over a year and just got blood work done -- I'm at 30ng/ml. Exactly where I was before I started supplementing. And homocysteine at 14.5 despite taking a good amount of B12. Keep in mind, I'm still less than 2 months gluten free so hoping that the gut heals and I can get those numbers to a better place!

Figuring out all of this with my 11-year-old daughter is going to to be an entirely different challenge that I haven't started to wrap my mind around. Her attitude is great, though. And she gets to go on a gluten farewell tour while we're waiting on the biopsy, so that's fun.