I Am New Here, Awaiting Test Results.

[Presto]

Hi!

My husband and I went on a high protein low card diet for weight loss. In studying what would be best to consume on this diet I read a lot of things off google. Low carb searches popped up a lot of gluten free diet information, but it didn't look like a plan/lifestyle for casual dieters, so I read a little and moved on to other topics.

The diet was working very well for both of us, and then after a few weeks we were making a trip out of town, and stopped at a fast food joint for breakfast.

I had a croissan'wich, and both our servings of hash browns. Oh the night before there were krispie kremes in the office, and I gave into temptation.

Wow, by the end of the night after that breakfast I was miserable!

I had really noticed far less anxiety on the high protein diet, but it was back real bad. I couldn't seem to think. I was annoyed at everything, and pissing off my husband.

My stomach started rumbling, and I realized how quiet it had been the last few weeks. Queasy feeling, some heartburn. And the gas!

The next morning I was so slow, still in a fog, couldn't move quickly, wasn't coordinated, clumsy.

My head cleared enough to remember some of the things I'd read about gluten. And I found this place.

Uh oh. This all fits. Or rather, my symptoms fit what can happen.

I immediately layed off any food with gluten. But then with more reading, I thought I ought to eat more of it and go in for testing. I don't know how long we were gluten low on the protein diet.

I got an appointment for blood testing, and ate as much processed wheat product as I could handle, and had blood drawn last Thursday.

Still consuming some wheat products, and awaiting test results.

This forum has a lot of information, and I am positive this is affecting me, but I may have a false negative due to the diet I was on. I volunteered to have an endoscopy, and the doctor didn't think I knew what one was. 8) But I want to find out so badly! My mother has all the same symptoms and more, but won't stick with an elimination diet. I figure if I come out positive, she'll have a good place to look for what her problem is.

[mftnchn]

Good for you. Just remember that false negatives still happen pretty often even without being gluten-free prior. Especially for early disease.

If your tests are negative and you want more confirmation you could then try Enterolab; you won't have to wait to go gluten free for Enterolab.

You've already done the gluten challenge, maybe. Depends on how strictly you eliminated gluten. Did you use soy sauce for example? Most has wheat in it.....stuff like that you may not have eliminated.

You could also have an allergy to one of the components that you had eliminated on the diet, including wheat.

Congratulations on your weight loss. Low carb has been the only way I can take off weight--until I went GFSF. Then recently I went to the SCD and have lost a lot more. Apparently my body responds with inflammation or with a starvation mode due to the malabsorption problems. It is now righting itself. What surprised me is I can consume quite a bit of honey on SCD and still lose weight.

[Nancym]

Some enlightened doctors are realizing that the dietary response is the best test.

[Presto]

Thanks for your replies.

"Early disease"... The mental symptoms have been with me my whole life, and in childhood were much worse. I do attribute them all to gluten because I was FREE those weeks on the diet. I felt sane. I felt socially confident. I practically purred every morning! No black fog. So unless coincidentally I had a bright patch in my life, I am convinced I've always had a background intolerance.

When I was a child I was convinced that I was a subject in behavioral experiment where people "behind the scenes" were running every aspect of life, and my parents and everyone I knew were just actors. All studying me.

Then I saw the Truman show when I was in my 20s. Ack!

Certain people could read my mind. I was convinced of it. It was only strangers brought in to evaluate me in my center stage behavioral experiment. Not anyone I knew could read my mind.

Completely separate from that, earlier in life, I was convinced that I had been able to switch bodies with people, and had an anxiety attack when I realized I was stuck in this one.

And running throughout my life, I had "awakenings". I felt like I woke up, yet I was in the middle of my normal day, with perfect recall of everything leading up to that point. No abnormal behavior or affect, just a sudden spike of awareness. Everything suddenly becomes too real.

I still get this feeling once in a while nowadays, especially that weekend I broke the diet and got glutened.

Anxiety and social issues have been with me forever, and they are depressing.

I didn't realize excessive gas is not just a source of humor. That I shouldn't have to drink a 20oz cup and a half of coffee to get things moving. That I shouldn't always be able to tell what I had eaten when it left. It seemed like normal because that's all I knew. Who talks poo? I do now! heh.

Still no lab results today. Blood was drawn Thursday at a Group Health, I don't know how long it will take them to run the test. I want to know!

I'm done glutening myself. I've been "taking" some glutenous foods every day since the day before I was tested, except yesterday. Not today. I don't think I can do it anymore.

I'll spend the money on Enterolabs if necessary.

Unless the tests come back tomorrow inconclusive and they want a biopsy. Maybe I should keep eating it.

My doctor said, "They are testing for antibodies, those don't go away when you stop consuming the reactant." But there are too many stories of false negatives to believe that. And what if I have low total IgA?

[bsiyatadshmayah]

My doctor said, "They are testing for antibodies, those don't go away when you stop consuming the reactant." But there are too many stories of false negatives to believe that. And what if I have low total IgA?

YES they do too!! Don't believe your doctor on this. Too many docs are so busy reading the piles of literature the pharmaceutical salesmen are leaving them to have time to keep up with the latest research. PLUS, there is a lot of "the latest research" to keep up with...it's not easy. Your antibody levels can drop within days of dropping gluten from your diet.

I think some sources recommend everyone going in for celiac panels be tested for total IgA. A low total IgA will render blood tests unreliable.

[aikiducky]

Your doctor is thinking of antibodies against some diseases that don't go away and give immunity for a long time. Gluten antibodies are different. They do disappear from the blood if there is no gluten entering the system. Though some people do show a weak positive even after two years on the diet, if they had a very high antibody count to start with.

Pauliina

[leadmeastray88]

You're doing the right thing!

Make sure you get a copy of the blood test results and post them here, and someone will help you interpret them.

It's crazy how many times doctors order you a "Celiac panel" and either don't order the right tests at all or missed some.

Like another poster said, if your blood test results are negative you could definitely give Enterolab a shot - www.enterolab.com. You don't have to be eating gluten to do the tests. But keep in mind that they can NOT diagnose Celiac disease. They can detect active dietary gluten sensitivity in your stool, aka IgA and tTG antibodies. This is not a clinical diagnosis, but it is definitely useful info. You can also order the gene test to see if you have appropraite genes - which might help your mom too!

Either way, after all testing is done you should try a strict gluten free diet. It sounds to me like you belong here and I wish you all the best of luck!

Kim

[Presto]

Thanks for reading my initial post.

I have posted a couple other threads, one with test results. I was ordered a TTg IgA which came back at 4.98 after a little more than a month gluten free with two days of gluten "loading" in anticipation of testing. I never imagined I'd get an appointment so soon, so I didn't have any time at all to reexpose to gluten.

My doctor didn't let me know my results either until two weeks later when I started to bug her with emails. In the meantime, I'd already gotten so sick of eating gluten I quit again.

She did tell me if I feel better gluten free by all means keep eating that way and would I like a referal to a nutritionist or a naturopath? I declined, I can learn plenty from the internet, and we are so busy working overtime and building a house and remodelling at the same time... I have no idea where I'd fit in other appointments.

She asked me then what I was looking for in getting a diagnosis, and offered an endoscopy. My initial appointment I'd asked for one... I figured it was too late at this point with additional weeks gluten free, and told her I was going to pursue gene testing at Enterolabs, and would she accept results from an outside lab not affiliated with GHC? She says whe would, but found "celiac HLA gene testing" available as a test she could order me. What I am looking for in a diagnosis is a note in my file in case of medications that contain gluten, and as further "proof" for my realatives, many of whom have similar symptoms but aren't willing to take my "whole different life experience" gluten free as good evidence that they should be tested.

So I started a new thread that hasn't been pinned yet. Would this be as definitive as Enterolabs? Any guesses? What if they aren't looking for the combo of DQ genes that is indicative of gluten sensitivity, but only celiac specific genes?

I think I will go print out a bunch of info from Enterolabs to bring with me, although I only have to drop off a blood sample at the lab. Chances are that I will need to bug her for results on this test too.

I just don't know what they will test for, and the tech who will draw blood or take cheek swab won't know. Will I just get another pos/neg result, without specifically identifying which genes I do have? That would be stupid, but kind of what I expect.

Just using you guys as a ranting/venting/sounding board. No body else either believes me or is interested enough to do this kind of research, which isn't much compared to some of you guys on here, I'm sure.

Thanks so much that there is a place to come talk about this!

Oh, my first experiment with gluten free cookies was a success! Even my DH liked them okay. However, I pigged out on them knowing they were safe and got a migraine, which I read is likely linked to the xanthan gum I used. Only one cookie at a time! (They don't seem to go stale, without gluten. )

[leadmeastray88]

What if they aren't looking for the combo of DQ genes that is indicative of gluten sensitivity, but only celiac specific genes?

I know Enterolab tests for both, not sure about the lab your doctor is talking about. Some doctors don't think 'gluten sensitivity' exists, some think it is the early stage of Celiac. Depends on the doctor. You should ask.

If you have gene analysis done, here are the ones Enterolab looks for:

Celiac: (HLA-DQB1*0201 or HLA-DQB1*0302)

Gluten Sensitivity:(any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302)

Another thing to consider about Enterolab is they only test for the beta part of the gene, not the alpha. I'm no expert in genetics, but I've heard if you're positive DQ2 and DQ7 for the beta part, you can still be Celiac because these two can combine somehow to form a complete Celiac gene. I heard Kimball lab tests for both the alpha and beta parts.

Hope that helps!