Good news from my 2nd doctors appt. Well, sort of.

[Zizzle]

I had my second appointment with an integrative medicine doc yesterday to go over test results, and, to my surprise, have another thorough exam and answer every question I could come up with. The lab test results were surprisingly good, which I think reflects the amount of healing that's taken place in the last 1.5 years on the GF/DF/SF diet.

Here's the run-down:

My labs indicate I probably don't have full-blown celiac disease. But I do have very permeable intestines. The Intestinal Antigenic Permeability test from Cyrex Labs (covered by insurance!) showed I had very high levels of Occludin/Zonulin IgM and Lipopolysacharides (PLS) IgG. Unfortunately, these are not specific to anything, they just indicate mucosal injury (which we already know I have). So I guess I'm not in remission!

In the Gluten-Associated Sensitivity & Cross Reactive Foods test, I tested equivocal for Cow's Milk (IgG&IgA), Alpha and Beta Casein, Buckwheat, and Coffee. I tested high for Polish Wheat ("khorasan" -- Triticum Poloticum) and SESAME. I thought, no big deal, just no hummus. Then I looked at all my GF rice crackers and snacks…most have sesame!! And I thought I was reacting to the flax seeds!

I was fine on corn, rice, oats, potato, quinoa, tapioca, chocolate, and other less used grains. Strangely I was fine for barley and rye too. Which makes me ponder, am I only wheat gluten intolerant? But I won't go there...

My Comprehensive Digestive Stool Analysis (Genova Diagnostics) was another surprise.
I had good levels of pancreatic enzymes, Short-Chain Fatty Acids, Calprotectin, bile acids, and pH.
Even my Eisonophil Protein X level, "which reflects IgE mediated inflammation and tissue damage in celiac disease and collagenous colitis" was very low.
There were no ova or parasites.
I had normal levels of strep, staph and e-coli, and beneficial levels of Lactobacillus and Bifidobacterium!! I had been taking Culturelle the week prior but stopped 3 days before the test. It seems it was working quite well for me, even hung around a few days, so I am to continue with it.
AND, there was no yeast overgrowth. Yay!! I can eat sugar!!

SO....if it weren't for this pesky diarrhea, you might say my digestion is OPTIMAL!! Truly puzzling.

But I am SO RELIEVED to know I don't have a yeast problem, or bile acid problem, or missing good bacteria.

So what is my problem??

It seems my nervous system and mast cells may play a bigger role than we thought in my digestion. I have dysautonomia, basically autonomic nervous system dysfuntion (http://en.wikipedia.org/wiki/Dysautonomia). The MVP symptoms, leg jerks, cold and heat intolerance, low BP, low temp, heart palpitations, etc. are all common in Ehlers-Danlos. The doctor also witnesses the rash I get on my trunk from exercising. Don't know why I had it then...white coat syndrome? He was puzzled, calling it a "Sympathetic Rash," which would be activation of my fight-or-flight response. Then he said accupuncture should take care of it. Really?? We'll see.

The obvious mast cell activity on my skin suggests mast cell activation in the GI system, which can explain my sudden and severe reactions to food sometimes. Just in the last week, I had an 8 hour total body flush, perhaps attributed to red wine, and another similar reaction after eating a hard boiled egg. With the last bite of egg, it felt like a hard candy going down my esophagus...painful. Then an urgent race to the bathroom...but I'm usually OK with eggs. Very strange.

On the EDS front, I have plantar faciitis of my feet (from muscles trying to hard to sustain my high but weak arches), and I have a locked pelvis (from muscles trying to stabilize otherwise lax pelvic joints). This leads to back spasms and other issues that can be improved through accupuncture, mild manipulation, and exercise.

I am taking a anti-inflammatory shake daily, a turmeric supplement, and extra fish oil. Just started this regimen today. I hope I don't react. This is the shake:
http://www.iherb.com/Metagenics-UltraIn ... 20677?at=0


I start acupuncture next week. Can’t wait. Oh, and it’s official – no more running in my future. Yay! But I have to start low impact exercise and weight training ASAP, before my joints start to fall apart.

[sarkin]

WOW, Z - that's a lot of news!

(Here's my one parenthetical remark - maybe you don't react to the components of barley and rye that aren't so closely shared with wheat - presumably, like wheat, there are multiple components - but I think you're right to guess that there's enough overlap to make them iffy...)

This sounds very promising, you must be feeling optimistic that you're closing in on the problem and forging a new solution. I *love* acupuncture, and I hope you find it helpful. And of course, best of luck with the whole new regimen!

Thanks for the update, very intriguing. Makes me think it's time to ponder my next move.

S

[tex]

Strangely I was fine for barley and rye too. Which makes me ponder, am I only wheat gluten intolerant? But I won't go there...

I have a different opinion on the barley and rye results. That was a blood test, wasn't it? There isn't a blood test available that will detect antibodies to any of the gluten peptides accurately, or reliably. They simply don't have the sensitivity needed to do the job.

The MVP symptoms, leg jerks, cold and heat intolerance, low BP, low temp, heart palpitations, etc.

Thinking back, I used to have the leg jerk symptoms sometimes, also, but they seem to have disappeared in the past few years. Remember that all the rest of those symptoms are typically closely associated with thyroid issues, also.

And, remember that even though your new doc seems to know what he's doing, that doesn't mean that the test results that he is relying on are chiseled in stone. Blood tests leave a lot to be desired, when it comes to food sensitivities, so please don't assume that all those results are right on the money.

I wouldn't put much faith in an IgE-based stool test, either, for that matter. That result contradicts your obvious physical symptoms, so it may be worthless.

Tex