CLeeB

Just like to chime in to say that I'm in the same boat with the same question. As you can read in my sig, my TtG test was within normal ranges, but i never had the full celiac panel done (stupid policy by HMO - only use the TtG test and then run the other ones if positive). But a comprehensive stool test (Metametrix) showed poor digestion and malabsorption, among other things. And Enterolab showed significantly high levels of anti-gliadin antibodies. Per naturopathic doc's orders, I've been gluten free for a little over a year.

I agree with Jestgar...it's unclear at this point. I just don't think science completely understands how gluten sensitivity/intolerance and celiac link/intereact/insert your favorite verb here. OTOH, I think it does matter for some of us what the label is. Yes, you are absolutely correct, the solution is the same. But dealing with the unknown is not something i think many human beings do very well. And there are a lot of unknowns when it comes to gluten.

FWIW, my naturopath, when i asked her to define my condition as best she could, said "severe gluten intolerance without test-proven villi damage."

Just proves how muddy the water really is.

So, there I am, entering the stadium with wife, sis and Dad to watch Barcelona crush the Sounders last night. Wife and sis are trying to figure out what to eat, and suddently my Dad says "Hey...it says gluten free on the menu." We go check it out - gluten free candy, gluten free chips and....gluten free beer!

It took a good 15-20 minutes to get over the shock of being able, once again, to watch live soccer and drink a beer (two of my favorite things). But man, did that Redbridge taste good.

Equally shocking was the fact that at HT I went to have a second, and they were all gone!

For those in the Seattle area with Sounders/Seahawks tix, you can find it at the Taco Ma's restaurant on both the Southwest and Southeast side of the stadium. The one on Southeast side of the stadium is right by Section 113/114.

Nearly a year into gluten-free living and still doing the two steps forward, one step back dance. I'm in the midst of a one step back period. Thankfully (sorta), my body's reaction to gluten exposure is settling into a fairly predictable pattern. Day 1: Constipation - no BMs. Day 2: bad headaches, 3-4 BMs and lots of bloating, bubbles, post-BM pain, cramping. Day 3+: This is when the other symptoms show up (they vary) - tingly fingers, more bloating, etc.

My question is mostly about Day 2. Anybody have any luck managing cramps, bloating, general stomach pain, especially post-BMs? heating pads help, as does peppermint tea. But they're hardly bandaids. I'll take any and all suggestions.

Thanks in advance.

This used to happen to me too, especially before going gluten-free, but even after. I wouldn't say it was frequent, but it did happen - usually at night, and (looking back) if I hadn't had enough water. It very ocassionally still happens.

Again, all I can do is share my personal experience, and a few words I just received today from my natureopath.

I was in very good health too, until 11/07 when I had sudden onset of GERD that sent me to the ER (you don't mess with pain in the chest area). Spent 6 months with traditional medicine docs running all sorts of tests - none conclusive. Even the TtG test was normal. Went to a natureopath who immediately suspected gluten. I waited until last Dec (by that point, 5-6 months gluten free) before doing the same Enterolab test - mine came back at 176. There are just those of us who do not show up on the blood tests. And as others on this forum have pointed out, even Mayo Clinic estimates 30% are false negative on celiac panels.

To back this up, my doctor just today sent me a message saying she attended a lecture last weekend by a nutrition expert, Shari Lieberman, who argues that diagnosis through TtG +/or endoscopy virtually requires 100% villous atrophy. Open Original Shared Link

So, if you, like me, caught it early, and go on a gluten-free diet, you'll probably never show up on the tests. Yes, some more progressive doctors may officially diagnose with lesser markers, but that does not seem to be the norm based on feedback on these boards.

It's one of my pet peeves about gluten sensitivity/intolerance v celiac - science has only been able to generate imperfect testing to date. Enterolab is atleast a positive part of the picture.

But, I empathize with wanting something concrete. I'm still struggling with limbo. And this is totally separate from the argument that it doesn't matter because the treatment is the same. That's certainly true, but the unknown is a powerful source of stress.

There is absolutely no harm in trying a gluten-free diet. Read these forums for suggestions re going completely gluten-free. Best of luck!

I notice it most with asparagus. really changes the smell of it as well.

CS

Just fyi, the particular odor of urine after asparagus has everything to do with genetics. Only some people create the odor, and only some can actually smell it. Both are determined by genetics. It doesn't really have anything to do with celiac or leaky gut.

I have been using glutamine for the last few months. Recently tried to back off some of the supplements including glutamine, and found that GI symptoms increased again. So, I'm back to taking it twice a day. I do think it helps, and in complete contrast with Larry Mac, I do not seem to be on the speedy recovery track. I'm in month 8 of gluten-free and still having some symptoms (although things overall are much MUCH better than last spring/summer).

I think it's worth a trial to see if it helps you.

An article in the Tacoma News Tribune today. It's good to see articles about gluten-free dining options in the local press. Enjoy!

Open Original Shared Link

This was refreshing to see. Just fyi, and I know this is more a comment for the restaurants section, but Woody's on the Water is fantastic and carries both Greens and Bards if you're into gluten-free beer. Joseppi's is mentioned as having gluten-free pasta, but the day we went there they did not have any. And despite knowing more than the average waiter about being gluten-free, the dish I ordered still came with a sauce that used a roux. Which I luckily questioned and they quickly brought me a replacement. Nice, but nowhere near Woody's in terms of knowledge, nor quality of food.

I don't have much to add other than "Me too!." I am currently doing acupuncture and the poor woman always cranks the heat lamp over my feet before she starts using the pins.

I do think the cold hand on the computer mouse has more to do with circulation than anything else, as my wife gets this too and she has no known issue with gluten.

This thread is making me push my natureopath harder to get my vitamin levels checked. I recently went to the happiest place on Earth over New Years and my going theory is the extended sun contributed to me feeling much better. I live in the very wet and gray Pacific NW, so I can imagine how winter could exacerbate what might be a Vit D problem.

I'm also fascinated by roda's post about D levels helping fatigue, increased HR after any physical exercise as I had that issue when things were at their worst last Spring/early Summer (before going gluten-free).

Just ordered it again last Friday. The kids love pizza and movie night at home. Does anyone else think they changed the gluten-free crust? Maybe they just cooked this one longer than previously, but the crust seemed thinner, and more oily than before.

Thanks, guys. I am looking Gluten-free, 500mcg, subingual of cobalamine, which looks as though it may be a tall order.

This is the type of B-12 my natureopath recommended for me: Open Original Shared Link

In her view, the methylcobalamine is the best absorbed.

It also says it is gluten free on the bottle. In fact, as you can see it's free of most major allergens.

Only downside is the cherry flavor.

has anyone checked your vitamin and mineral levels?

Thanks for the quick response. I did have my B-12 and folate levels checked last Summer by a traditional medicine doctor and they were seemingly fine - B-12 was 611 (range 210-910) and Folate 14.3 (3.1-17.5). Natureopathic doc put me on B-12/folic acid injections anyway. A couple months ago, I switched to sublingual B-12 and she just asked me to switch to a slightly different form of B-12.

I too tried omeprazole, and Ranitidine, and Zegerid and ended up with Nexium. But I went off all that stuff after I started seeing the natureopathic doc (June last year). The surges continued off and on through Thanksgiving. So, I don't think they directly correlate with the Nexium.

Just a brief history for background. A late night trip to ER in Nov 07 started me on a course of taking nearly every anti-reflux med on the market with only superficial help. Various tests ruled out heart/lung problems, ruled in reflux. Other tests ruled out a host of other potential problems. I was basically told by the gastroenterologist (who was somewhat of an a$$) - you can have surgery or live with the 75% reduction in symptoms by Nexium. I also had what seemed like wicked blood sugar dips every once in awhile, constipation, cramping, slightly elevated HR some days, tingly fingers, and a whole host of weird aches and pains. After 6 months of no resolution, I finally went to a natureopath who suspected gluten sensitivity. After getting rid of some bad bacteria & parasites that probably flourished in the low stomach acid environment, things have steadily (if not discouragingly slowly) improved. Enterolab IgA anti-gliadin test recently came back strongly positive.

But, I had one particuarly unsettling symptom and am wondering if anyone else has felt something similar: I can only identify it as a "surge"...it was a powerful, but very short surge that radiated up/out (depending on where it started) and was gone in less than a second. About half the time, it started at the base of my sternum and surged up. The rest of the time, it started below my adams apple and kind of surged outward. But powerful enough that it would stop everything else I was doing. It felt sort of like a muscle/nerve spasm, but not quite. As you can see it's somewhat hard to describe accurately. It was very inconsistent and not necessarily attached to stress (although sometimes they definitely coincided).

Of course, it freaked me out to no end at the beginning - GABA helped calm the nerves down somewhat. My natureopathic doctor (Tahoma Clinic - south of Seattle) says it is a symptom common to her patients with gluten issues. The acupuncturist thinks its a combination of nerves, stress and GI issues, but that it's fairly uncommon in her practice.

Neither can explain the physiology of it.

Thankfully, I haven't had this feeling in a couple months. I'm hoping it stays away b/c it's VERY unsettling. In fact, I'm kind of glad that I'm writing this now when I can be somewhat factual about it.

Anyone else experience anything like this? I kind of hate to add to the "anyone else out there with symptom x" posts, but this one was so weird that I felt like the reality check was worth it.

Thanks in advance. And despite my low post count, I've read these boards fairly frequently and they've been a huge source of help, and comfort on the down days.

N End Tacoma store has it too. I've had it 2-3 times. The crust is OK - I think we've made better gluten-free pizza crust at home. But it's much better with the basil pesto than with the red sauce. That is just my taste buds though...everyone has different preferences. I think the idea of ordering pizza while on a gluten-free diet is kind of liberating and "normalizing."

Last week, there was a writeup in the Tacoma News Tribune about gluten-free restaurants in Tacoma. As my wife said the other day with tongue firmly in cheek, "you picked a good time to go gluten-free." Open Original Shared Link

My 3 year old son's Total IgA test was high (not the IgA-gliadin). All I can find on the internet is about IgA deficiency, nothing about what it means when it's high. Anyone else know what can cause it to be high?

I'm not sure I can shed too much light on this, but I too had elevated IgA scores and empathize with the lack of information. The normal range for my health care provider is 68-378, my scores were 511 and 484 a couple months apart. The allergist I was working with said there are several things that could cause the high IgA levels, including autoimmune disorders, kidney/GI issues (including celiac), certain infectious diseases and a few other very unusual immune related things. What he didn't mention, of course, is non-celiac gluten sensitivity. I recently did the EnteroLab testing and my anti-gliadin IgA scores were fairly high. So, in my case, the overall IgA scores could simply be a reflection of the anti-gliadin levels.

However, I'm not a three year old. And I agree with earlier posters - you should bring it up with the doctor.

Brand new here, although I've been reading these boards for a few months now. Without going into my entire history, I had sudden onset of reflux, and other symptoms about a year ago. After 6 frustrating months of inclusive and some unnecessary tests, I decided to switch gears from traditional medicine and went to a natureopathic doctor. She immediately suspected gluten sensitivity. After getting rid of a couple parasites, and some unwanted bacteria, and sticking to a gluten-free diet, I'm slowly (very slowly) getting better.

I recently (within the last month) had Enterolab run the antigliadin test, and my result was 176. Negtive 0-10, normal positive score 20-80 and I think it says on the website the average postive score is 45. So, mine was just a tad high.

This may have previously been covered in another thread, but I emailed and called Enterolab and basically was given the following explanation for very high antigliadin test results: (paraphrasing here b/c I'm combining both email and phone conversation) Very high scores are generally seen for two reasons: 1) you're young and the gluten sensitivity kicked in recently and/or 2) your immune system is not compromised by the autoimmune nature of GS and your body is still able to produce sufficient IgA antibodies in response to the gluten it perceives as an allergen.

I thought this was interesting and had not read this on these boards. I have learned alot from this site, so in the interest of giving back...

p.s. I did not do the full test, because my grandmother very likely has celiac (she's been gluten-free for 40+ years) and previous tests through my natureopathic doctor proved poor digestion and malabsorption to be a problem.