Planning a gluten challenge

[Zizzle]

I've been GF/DF/YF for almost 3 months. I'm happy to report I finally had 2 formed BMs - the first time in more than a year!! They weren't completely "normal," but good enough.
I am still considering getting diagnosed for probable celiac disease (Enterolab results are highly suggestive, including HLA-DQ2), and I go see Dr. Alessio Fasano in Baltimore on Sept 7.

Before I go further, I want to prove to myself that gluten is in fact my major dietary trigger. As many of you so correctly predicted, after starting the diet, I noticed my reactions to dairy got worse (I was hoping I didn't have to be 100% DF). I can still have small amounts of goat cheese or parmesan on a salad, but tiny amounts of lactose (1/2 tsp of ice cream) make me feel horrible.

I started the GF diet after a week where I had a bagel every morning, then thought I had a terrible GI bug by the weekend (massive D), and treated it with toast, plain pasta and pretzels!! Needless to say, by day 8 of my debilitating "GI bug", I realized it was probably not a bug after all...then my Enterolab results finally arrived.

I've been glutened a few times over the past 2 months, mostly with soy sauce accidents, or eating corn chips at a mexican chain not realizing they were fried on site with gluten-containing foods. I got noticeable indigestion and D for 12 hours from these, but I'm concerned there were other ingredients involved (alcohol, MSG, soy, spices) that may have contributed to my symptoms.

So I want to conduct a true gluten challenge. I presume this would entail eating nearly plain pasta instead of bread (since I'm avoiding yeast). Question is, how much should I eat? An entire helping, a few bites? What kind of reaction should I expect? How long will it last? Could it set me back more than a couple of days? Am I crazy??

If the symptoms get bad, is there any thing I can do or take to minimize the reaction? Antihistamines? Colon cleanser ?

[Polly]

Hi Z!

Refresh my memory...........did you have Enterolab's test for antigliadin (gluten) antibodies?

Polly

[Zizzle]

Hi Polly,
Yes--
A) Gluten Sensitivity Stool and Gene Panel Complete

Fecal Anti-gliadin IgA 37 Units

Fecal Anti-tissue Transglutaminase IgA 14 Units

Quantitative Microscopic Fecal Fat Score Less than 300 Units

Fecal Anti-casein (cow’s milk) IgA 13 Units

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)


Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA 13 Units

Fecal Anti-soy IgA 11 Units

[Polly]

Hi again!

OK..........so you are definitely gluten-sensitive according to Dr. Fine's test. And you also know from experience that you are gluten sensitive because you have been "glutened". I guess I'm not sure what you mean by a "true" gluten challenge. What is your goal in doing this? Are you seeking additional proof? IMHO, it would be highly unlikely for gluten NOT to be your major problem given what you already know and what we know about MC. If you want to conduct a "pure" gluten trial in order to have additional proof, that's certainly your decision. I don't know how you can minimize the reaction...antihistamines won't likely help, since gluten sensitivity is not usually an allergic reaction. Just keep close to the toilet!

I wouldn't think you would need to do a gluten challenge for Dr. Fasano. Three mo. is a very short period of time to be GF - the antibodies hang around sometimes for years. Have you had the celiac blood test with your regular GI? (I can't remember). If not Dr. F will probably do it. (It is negative for most of us with MC). However, if you are a true celiac, it will be positive. Dr. F. will also probably want to do endoscopy to biopsy the villi in your small intestine. They will be damaged in true celiac disease but not with the gluten sensitivity that goes along with MC. You already have some evidence that your villi may be fine - the fact that you fecal fat absorption was normal. Usually this is positive when the villi are damaged.

I know this all seems confusing, so please ask any questions you have. Have a great weekend!

Love,

Polly

[Zizzle]

I had a negative celiac panel 5 years ago, so my gastro refused to re-test, saying "I didn't have celiac then and never will". Of course my LC symptoms started more recently, so celiac could have been triggered by pregnancy, bacteria, etc in the last 5 years. I'm not fishing for a label here, but I'd like to know if it's true celiac-- it would compel me to use a different toaster oven and be more careful when I eat out. I might need bone density testing, etc? If it's celiac, I imagine it's adult onset and I don't have major damage yet (I've never been anemic, had healthy pregnancies, etc).

Am I wrong to want to know? Does it really make a difference whether I'm celiac versus intolerant?

I also have high-level antibodies suggestive autoimmune liver disease, but liver function appears to be normal so far. I need to stop that train dead in its tracks! I'm not gonna let it get me!!

[wonderwoman]

Polly, I have often wondered also if I have Celiac in addition to CC. According to what you said above to Zizzle,

You already have some evidence that your villi may be fine - the fact that you fecal fat absorption was normal. Usually this is positive when the villi are damaged.

My fecal fat test by Dr Fine in early March 2010 was under 300 so then I can assume I do not have Celiac. Is that correct?

[tex]

Whether or not you know that you are a celiac, does not depend on any test. It depends on your opinion, and your trust in the "tests" that have indicated that your sensitive to gluten. If for some reason or other, you feel that the classic celiac blood tests are more trustworthy, (with their proven poor record of false negatives), then you will not be happy until you tackle that hurdle.

Be aware, though, that while the Enterolab stool tests can reliably detect gliadin antibodies for at least a year after the GF diet is adopted, that is not true for the blood tests. Usually, they will become negative, after a few weeks to a month or so have passed after the adoption of the GF diet. A true gluten challenge requires the daily ingestion of at least the equivalent of one slice of bread, (made from wheat flour), for a period of from 3 to 6 months, in order to get reliable test results. Just because you will be sick as a dog within a few days of eating gluten, does not mean that your blood level of antibodies will change significantly - in fact the blood is very slow to pick up the increased antibody level. A challenge of less than at least 3 months will almost certainly result in a false negative result, simply because of the poor sensitivity of those tests. If you stick with the challenge for say 6 months or more, and then have the classic celiac tests done, you can be confident that you have done every thing you can, to get an "official" celiac diagnosis.

After that challenge, it will take roughly as long as the challenge lasted, of additional time, (IOW, roughly 3 to 6 months), for the symptoms to subside, once you resume the GF diet again. You have to want to jump through the official medical hoops much worse than I do, in order to pursue a celiac diagnosis by means of a gluten challenge.

As Polly suggested, though, Dr. Fasano may be willing to settle for the fact that you will still show significant small intestinal damage, (to the villi), if he does an upper endoscopy, (and if you do indeed show some degree of villus damage), and he may be willing to diagnose you with celiac disease on that basis, (IOW, sans gluten challenge).

Tex

[tex]

Charlotte,

A fecal fat test score below 300 is an indication of, (but cannot completely guarantee a zero level of damage), the absence of villus damage in the small intestine. That test is based on a lot of assumptions, which may or may not fit any particular patient. The test assumes that the patient is approximately average in size and body weight, and it assumes that the patient consumed a "normal" amount of fat, (prior to the sample collection). If the patient is smaller or lighter than "average", and/or ingested a less than "normal" amount of fat, prior to the test, then the test could be expected to show a false negative result. IOW, you can't show too much fat in a stool sample, if you are not ingesting enough fat, in the first place. Conversely, if a patient is much larger than "average", and/or ingested a larger than "normal" portion of fat prior to the test, then the result could show a false positive. Everything is relative for a "one-size-fits-all" test.

That said, there is a very good chance that Dr. Fine considered all this in making the necessary assumptions for the test criteria, (in order to be on the safe side), so that for most of us, a negative score on that test is a pretty reliable indicator that we probably have no villus damage, (or minimal damage, if any at all is present). The test result will necessarily be biased on the negative side, though, because most people with a fat malabsorption problem, (steatorrhea), will tend to minimize their fat intake, and if they curtail it sufficiently, obviously that can confound the test results.

Tex

[Zizzle]

I guess I just want to be taken seriously. I'm not just someone with medically unremarkable colon inflammation trying out the latest diet fad. My LC is not just a niusance disease, it is a symptom of a much uglier autoimmune process going on in my body that can only be tracked with occasional bloodwork and hope. If I were diagnosed as celiac, there would be more reason to test my small kids regularly, and finally convince my sister and mother to be tested. They have IBS and chronic atrophic gastritis, respectively, and I've only been able to convince them not to eat obvious sources of gluten. Luckily, my mother lives on a farm in Guatemala where gluten is not hidden in every single food. But I see the signs of gluten intolerance and autoimmunity throughout my family. I'm sounding the alarm and no one is really listening.

With the label, I would have doctors that take things more seriously, better follow-up, etc.

I don't know. I guess I should just be happy that I found the answer to my LC and call it a day.

And no, I will not subject myself to a lengthy gluten challenge for the sake of testing, so if Fasano thinks it's too late to test, oh well. But I will allow him to try biopsies if he thinks there's a strong likelihood they will find something. I wish he would spend time developing a more sensitive test that doesn't require a long gluten challenge! I wonder what level of confidence he has in Dr Fine's tests...

[tex]

Does it really make a difference whether I'm celiac versus intolerant?

It does if you're concerned about pleasing your doctors. Otherwise, it's irrelevant.

I wonder what level of confidence he has in Dr Fine's tests...

Good question - I'm guessing "not much", since he seems to be attempting to maintain a mainstream medical profile, (which is generally necessary in order to keep his career on track). Maybe Polly has some insight on that issue.

With the label, I would have doctors that take things more seriously, better follow-up, etc.

Many of us have given up long ago, on trying to please our doctors. That's why we're here. Some day they will see the light, but many GI docs, especially, seem to go out of their way, to ignore the obvious.

As to your frustration with your relatives, and their reluctance to follow your advice - don't feel like the Lone Ranger. Each and every one of us is in almost exactly the same position. Those of us who have spent hours trying to convince relatives, (and/or friends), to do what they need to do, (because of obvious symptoms), are just as tired of beating our heads against the wall as you are.

Trust me, you could be diagnosed with the mother of all autoimmune diseases, and it would not be sufficient to convince your relatives that they need to take precautions, or get tested. That's just human nature, I suppose. I've given up trying - when they are so sick that they will be forced to do something, then they will probably go to see a doctor. And they will probably say something like, "Gee, I wish I had known about this sooner". Bless their hearts.

Tex