My Story (a Little Long) And A Question.

[rueyn]

I have suspected an intolerance to wheat/gluten for a little over a year now. Severe bloating after eating wheat-heavy foods like pizza, pasta and such. So in early February I decided to start a gluten-free diet, just to see if I could narrow down what was going on.

The first day was like a miracle. I had zero bloating, and my stomach just felt, well, completely at ease and normal for the first time in years. After being totally gluten-free for two full days, I ate some cookies that were wheat-free but NOT gluten-free. And guess what happened? Headache, tiredness, bloating, nausea and stomach ache.

So then I decided to go completely gluten-free for the following two weeks. My bloating, nausea and fatigue went away, and I stopped having to take my daily Claritin. Eight hours of sleep at night actually felt like enough for the first time in years, and I couldn't get enough exercise.

During that time I went to an allergist who determined NO allergy to wheat or dairy, so I made an appointment with a GI doc. I didn't know that I shouldn't have already gone gluten-free before getting tested. I had been gluten-free for three weeks, so the GI doc put me on a gluten challenge. Day one was completely uneventful. Day two, however, was pretty miserable. I was tired when I woke up. I ate pizza for lunch - two slices, no sauce - just to get in my gluten for that day, and afterward I had to lay down and sleep: my eyes were actually closing on their own. Then the nausea came and finally the headache. The nausea slowly subsided, but I still felt ridiculously tired, I had random chills and a headache.

I called the GI doc the next day and told him I couldn't make it a full four weeks on the challenge (he had me eating bread at every meal), so he told me to stop eating gluten and come in and get the blood work done. I had been off gluten for three days when I did the blood and stool samples. Everything came back normal, including the Serum IgA and Antiendomysial AB, which the doc said he expected, since I was already gluten-free. There were no signs of inflammation or malabsorption.

The GI doc wants to do an upper endoscopy and colonoscopy, which I declined, as there are no signs that anything is wrong in the blood and stool samples.

I have a strong feeling that what I have is more than intolerance. For instance, after three weeks of gluten-free, I am able to process real cheese again without the exhaustion and nausea, which tells me that my small intestine is healing, and that wouldn't be the case if I were simply intolerant.

The major reasons I think it's celiac rather than an intolerance:

* This started right after I gave birth in February, 2006.

* Celiac explains the massive amount of weight I lost throughout the first year of my son’s life (was 165 at the time my son was born...down to 115 seven months later. Every blood test I've ever had since then has come back normal, except that I have low calcium levels).

* It explains my hypothyroidism (diagnosed in November, 2006).

* It explains why I continued to have extreme fatigue, even after the TSH levels went back to normal.

* I didn’t have this pre-pregnancy.

So my big question is: now what? Obviously I'm sticking to gluten-free, but is there ANY other way to test for celiac besides the gluten challenge? There seem to be many things that need to be carefully watched for over the years in the case of celiac (cancers and such), whereas, in the case of intolerance, those things don't pop up, and I don't want to miss something important.

Any opinions/suggestions would be greatly appreciated. And thanks for reading this far

[RiceGuy]

You won't be the first one to find the gluten-free diet works, and get negative test results. That often happens even for those who don't go gluten-free first.

I do know that Enterolab claims to be able to test up to one year after going gluten-free. Obviously, nothing can be guaranteed 100%, but that's about the best I'm aware of as far as lab testing goes. However, the diet is the best test, and it seems you've gotten very positive results with it. Congratulations on figuring it out!

I agree with your reasoning that it seems like more than just an intolerance in your case. Even if it wasn't, Celiac can apparently develop from an intolerance, though supposedly less likely if you remain gluten-free. I also read someplace recently, that some additional genes have been identified as being related to Celiac. If true, then there may be a lot of people who think they have "just" an intolerance, but may in fact be Celiac, or can more easily become Celiac than previously believed.

Welcome to the board!

[weluvgators]

Enterolab detected elevated levels of antibodies in my stool sample even though I have been gluten free for some time.

Here is a quick timeline our my gluten elimination:

June 2006 - started by gluten elimination in home and mainly out with about once/week or less cheats

June 2007 - eliminated major source of cheats

November 2007 - eliminated major source of gluten CC

April 2008 - implemented further protocols for elimination of gluten CC

February 2009 - began even further elimination of gluten CC with the help of EZ Gluten testing

March 2009 (1 1/2 years strictly gluten free with a previous 1 year of gluten light) - my stool results from Enterolab showed highly elevated Anti-gliadin and Anti tTG. This is my only test so far. I started down this path to help my nursing child. I never realized that *I* had issues with gluten until I eliminated it further and further. Of course, while previously asymptomatic, learning what I have about celiac, gluten intolerance and wheat allergy, several past health anomalies seem far more explicable now.

I chose to do Enterolab testing because I could not figure out a more sensible way to check on intestinal performance, so I included the fat malabsorption test. I was completely caught off guard by the highly elevated antibodies! Fortunately, the fat malabsorption test returned in the normal range. I also chose to do the genetic testing with them and found the information to be very informative.

[leadmeastray88]

The GI doc wants to do an upper endoscopy and colonoscopy, which I declined, as there are no signs that anything is wrong in the blood and stool samples.

...

So my big question is: now what? Obviously I'm sticking to gluten-free, but is there ANY other way to test for celiac besides the gluten challenge?

My question is, why did you refuse the endoscopy? Even though the blood/stool samples were "normal", you said yourself you're convinced it's more than an intolerance because you're still having problems. You've done the bloodwork, the only other way to test for Celiac is the endoscopy. A biopsy can be positive even with negative bloodwork. Unfortunately, both test methods for Celiac can be very unreliable. That's why it's a good idea to pursue both.

You could use Enterolab, but there again, it's only testing for a sensitivity. It can't diagnose Celiac. Nothing can diagnose Celiac except bloodwork and biopsy (except in some very rare cases, dietary response). Genetic testing can be helpful in ruling Celiac in, but again, it can't rule it out.

If you don't want a scope and you feel better gluten free, why bother? You're feeling better and that's what counts. Listen to what your body is telling you

[rueyn]

The reason I refused the endoscopy is because I had already been off gluten for so long I didn't think the celiac would show up. I know sometimes the blood work is negative even while the endoscope is positive, but all the posts I've read said you have to be eating gluten up to the time of the scope, which I wasn't

For those who used Enterolab - how, uhm, exactly do you have to do the stool test? For my GI doctor, I had to actually scoop out small samples (TMI, I know), and it made me sick to my stomach.

Have any of you ever taken the results from Enterolab to your GI doc? Do GI docs recognize outside sources like that? It sounds like their stool tests look for the same thing as the blood tests I've already had...is it possible that the stool samples will yield a more, uhm, concentrated result, thus possibly catching something the blood tests didn't?

Thanks for all the great help!!

[sbj]

Have any of you ever taken the results from Enterolab to your GI doc? Do GI docs recognize outside sources like that? It sounds like their stool tests look for the same thing as the blood tests I've already had.

Hi! Just in case you were at all confused, the Enterolab results cannot be used to diagnose celiac disease. Some doctors might take a look at them but the Enterolab website itself makes clear that their tests do not diagnose celiac disease. Sorry - you can get their testing done but you still won't know if you have celiac disease.

I really know of no way to get a celiac diagnosis other than positive bloodwork/positive biopsy/genetic markers/dietary response (some combination). At least you know that you feel better without gluten. Perhaps you can simply monitor yourself for those conditions that we celiac sufferers need to look out for? That is, watch out for other auto-immune disorders, check for vitamin/mineral/nutritional deficiencies, and get a bone density scan? Other than that, stay off the gluten and you should be healthy!

BTW: Massive and rapid weight loss can be a very serious issue. If your GI recommends an endoscopy and/or colonoscopy then I would seriously consider it. Some conditions do not show up in blood or stool and might only be visible via one of these two methods.

[rueyn]

Perhaps you can simply monitor yourself for those conditions that we celiac sufferers need to look out for? That is, watch out for other auto-immune disorders, check for vitamin/mineral/nutritional deficiencies, and get a bone density scan? Other than that, stay off the gluten and you should be healthy!

The bone density scan is a *really* good idea! Thanks!!

BTW: Massive and rapid weight loss can be a very serious issue. If your GI recommends an endoscopy and/or colonoscopy then I would seriously consider it. Some conditions do not show up in blood or stool and might only be visible via one of these two methods.

I've had blood tests and body scans for the weight loss, and everything turned out a-o.k. (except for the low calcium levels, which my primary doctor didn't even mention - I found out only when I requested a copy of the test). If I still have issues over the next few weeks, then I will seriously consider having the endoscopy and colonoscopy, but honestly right now I feel better than I've felt in years, which is really nice to be able to say

[wendstress]

Your experience sounds so similar to mine!!! Symptoms started after childbirth, weight loss, fatigue.

Everyone here has given you good advice....

One other thing to consider is microscopic colitis. When I had my endoscopy/colonoscopy to confirm the celiac, the GI also discovered I had microscopic colitis (MC). The symptoms are nearly identical to celiac disease.

What happens with the MC is that the lymphocytes in the colon respond to irritants, or what they perceive as foreign bodies. The lymphocytes thereby makes the colon wall irritated, and inflammed. The purpose of the colon is to remove water from the waste stream; when the colon wall is irritated the water isn't effieciently removed and diarrhea results.

People with MC have had very good success by removing Gluten from their diets!

For me, I have 2 diagnosis, but the treatment is the same! In addition to going gluten-free, I am also taking a steroid formulated not to break down until it gets to my colon....that will help with the inflamation.

[ang1e0251]

I could not test at the time I went gluten-free and I refuse to take a gluten challenge. I would just be too sick. You know I am at peace with it. The dietary response was just too obvious too ignore in addition to clearing up the rashes I had.

I'm not sure why you need "proof". Seems to me your body is giving you the proof. You know what you have to do to be tested. If you can't do that, then your choice is to accept what your system is telling you.

[leadmeastray88]

For those who used Enterolab - how, uhm, exactly do you have to do the stool test? For my GI doctor, I had to actually scoop out small samples (TMI, I know), and it made me sick to my stomach.

Have any of you ever taken the results from Enterolab to your GI doc? Do GI docs recognize outside sources like that? It sounds like their stool tests look for the same thing as the blood tests I've already had...is it possible that the stool samples will yield a more, uhm, concentrated result, thus possibly catching something the blood tests didn't?

Nope, no scooping required! You just pass a complete BM (sorry if TMI again lol) into this container that they give you and then you immediately send it off. For the genetic test, they send swabs, they look like large Qtips, and you rub the inside of your cheek with them. It's really really simple. WAY easier than scooping, I know how gross it is I've done it

I took my results to my doc and she was actually really interested to hear about it. I don't know if it helped at all in her semi-diagnosis but atleast she knows of it now, and she didn't completely disregard me at all. She knows how much going gluten-free has solved my problems.

Also, like sbj said Enterolab can't diagnose Celiac. The stool tests are meant to detect an "active dietary gluten sensitivity" in your stool, which you're pretty much sure of already.

[rueyn]

Nope, no scooping required! You just pass a complete BM (sorry if TMI again lol) into this container that they give you and then you immediately send it off. For the genetic test, they send swabs, they look like large Qtips, and you rub the inside of your cheek with them. It's really really simple. WAY easier than scooping, I know how gross it is I've done it

I think I'm most interested in the genetic test right now, as I have a three-year-old I need to keep an eye on. Thanks for explaining the procedures!!! =)

[rueyn]

Your experience sounds so similar to mine!!! Symptoms started after childbirth, weight loss, fatigue.

Everyone here has given you good advice....

One other thing to consider is microscopic colitis. When I had my endoscopy/colonoscopy to confirm the celiac, the GI also discovered I had microscopic colitis (MC). The symptoms are nearly identical to celiac disease.

What happens with the MC is that the lymphocytes in the colon respond to irritants, or what they perceive as foreign bodies. The lymphocytes thereby makes the colon wall irritated, and inflammed. The purpose of the colon is to remove water from the waste stream; when the colon wall is irritated the water isn't effieciently removed and diarrhea results.

People with MC have had very good success by removing Gluten from their diets!

For me, I have 2 diagnosis, but the treatment is the same! In addition to going gluten-free, I am also taking a steroid formulated not to break down until it gets to my colon....that will help with the inflamation.

Wow I've never heard of MC. That's something for me to check out...thanks!