Advice Please

[CatMommy]

Hi, here is my story:

I've had IBS symptoms for a long time, more than 20 years and have learned to live with it. What is a day-to-day thing for me would probably quite alarming for someone who is not used to IBS.

In '95, I was diagnosed with Hashimoto's, and regularly see an endocrinologist for this. A few years ago, he noted an elevation in liver enzymes, so finally he referred me to a GI for followup.

The GI ran a bunch of tests, one of which was for celiac. He was onboard with this diagnosis, based on IBS symptoms. He called a few weeks later to inform me that I had autoimmune hepatitis, and that I was anemic. The celiac Ttg test was negative.

GI did colonoscopy and upper endoscopy to check for bleeding, since I shouldn't be anemic at my age. All negative. I asked whether he did a celiac biopsy; he said he didn't need to. My blood test was negative.

After about a year of taking Prenisone and Azathioprine for the AIH, I visited a second GI, one who specializes in celiac. She ran a battery of tests at a lab called Prometheus. All Prometheus tests were negative. My genetic tests were positive for both DQ2 and DQ8. Doc #2 is convinced that I have celiac, especially with my tendency toward autoimmune diseases and genetics and states that 10% of all celiacs are seronegative. Why is this?

My serum IgA is normal. My diet is mostly natural and very low in processed foods, but not gluten-free. I do have a sandwich from time to time, and maybe a cookie here and there. I don't look for gluten in foods before I eat.

I am off the Prednisone, but continue to take Azathioprine 50 mg daily. Could this drug have an effect on the tests? Should I pig out on gluten and do the tests again?

GI #1 said sure, he'd do a biopsy, if that's what I want. He said if I want to be celiac, just stop eating gluten! I said I don't want to take an immune suppressor all my life if the problem is dietary. So condescending.

I would have GI #2 do a biopsy, because she actually believes this is not just possible, but probable. Don't know if my insurance will reimburse as she is out of network.

So, any advice would be totally appreciated. Where do I go from here?

[mushroom]

Hi and welcome to the board.

Unfortunately, for all of us, we have heard most of your story before because we have all had to learn to deal with the medical profession. As I see it, you have two choices:

1. Let the condescending GI#1 do the endoscopy, but how do you make sure he takes enough samples if he doesn't believe you have it?

2. Pay the out-of-network charge for GI#2 (do you have to pay the whole thing or just an excess?) because she will at least be looking for celiac.

3. Forget about their diagnosing you and stop eating gluten.

The Azathioprine would not have any effect on your test results, because it cannot stop you from making antibodies to gluten. But you are seronegative, as are about 20% of the celiac population. Your endoscopy may well be negative too - again about 20% false negative rate is accepted. Also, your endoscopy depends on the skill of the doctor, how many samples he takes, where the damage (if any) is in your small intestine.

Now we already know that you have the genetic predisposition to celiac, that you have two other autoimmune diseases with the Hashimoto's particularly being very closely associated with celiac, you have unexplained anemia (also a celiac symptom), you have so-called IBS. So it does add up to at least sounding like gluten intolerance even if it is not diagnosable as celiac. Most doctors are not yet onboard with the diagnosis of non-celiac gluten intolerance, and researchers are just addressing this issue now, because it is obvious that there are tens of thousands of people who test negative yet have problems with gluten. So the current recommendation if all testing is negative is to try to the gluten free diet and see if it works for you - a good strict trial looking for all the hidden gluten, cleaning all gluten out of your pantry and refrigerator and getting new toaster, colander, nonstick skillet, wooden utensils and cutting boards - and seeing how you feel gluten free after three months. By the way, what symptoms are you currently taking the Azathioprine for?

[CatMommy]

Hi, thanks for your response. Lots of good advice.

The Azathioprine is for the autoimmune hepatitis. I never had any active symptoms of liver disease, only elevated AST and ALT. The ANA titer was elevated, and I had a liver biopsy that sealed the deal. Azathioprine suppresses the immune system, and it has some scary side effects, but my doc says it is a "low dosage."

I have also wondered about SIBO, which my first GI enthusiastically agrees with. He is quick to whip out the prescription pad. Would taking an antibiotic for SIBO mess up the celiac tests? Isn't SIBO more common in people with celiac? I also wonder if I have intolerance to fructose, fructans, and so forth. Has anyone ever heard of that?

I wonder if I should gluten-load for any further testing? If so, how much should I eat and for how long? I don't know how much longer my insurance will put up with me!

Sorry I have so many questions.

LB

[mushroom]

Have your liver values returned to normal with the Azathioprine? It is possible that if you stopped eating gluten you may be able to get off this medication. I have to take an immunisuppressant and it is a real pain when you get some kind of infection.

Yes, many of us have SIBO in addition to celiac disease, so it is not out of the question to have them both. It is also possibe to have other food intolerances like fructose in addition to celiac. In fact, it seems to be more rare to have only celiac without other intolerances. Medication for SIBO would not afffect celiac testing.

If you have been gluten light for some time and wanted a definitive test, it would be necessary to eat a full gluten load for a couple of months to ensure any testing is accurate. That means the equivalent of 3 to 4 slices a bread a day. Had you been eating gluten lite for previous blood work by chance?

[CatMommy]

Yes, the liver numbers come into normal range after only a couple weeks of Prednisone. When the GI doc tried to lower the Azathioprine, the numbers crept up a little. So I've been at 50 mg. for basically 3 years.

Since I am overweight by about 40 lbs, I try to stick to Phase 2 of South Beach, and try not to eat processed foods, sugar, etc. Sometimes I have a sandwich. Celiac doc says that feeling a lot better (less gassy!) while on South Beach is a clue that being gluten-free helps. Other GI doc says that humans aren't meant to digest fiber, that is why fiber is good for you.

Thanks for answering all my questions!

LB

[frieze]

Open Original Shared Link

[mommida]

There is a connection to Autimmune Hepatitus and Celiac.

You have already been diagnosed "probable Celiac" from the genetic test with GI symptoms and 2 other other auto-immune diseases. You can go for the "gold standard" diagnoses by 1. loading up on gluten 2. Celiac panel blood test and total IGA 3. Endoscopy with biopsy.

There is also enough evidence to say that a gluten free diet can be beneficial for auto-immune illnesses and IBS. I personally know a woman with MS that has shown MAJOR improvements by going gluten free and her team of doctors strongly suggest their MS patients go gluten free.

[sb2178]

Yes, based on your intake, it sounds like you would be a false negative just because you probably aren't eating enough for it to show up. Fiber is good for you, but normal amounts shouldn't cause distress!

[CatMommy]

Thanks so much to everyone who answered my questions.

On one hand, the thought of giving up Chick-fil-a forever is difficult, but on the other hand, I would like to be healthy. I think that I will load up on gluten to try to get as accurate a test as possible. If it is still negative, I will act on the advice of the celiac doctor who is fairly certain I have, at the least, a gluten sensitivity.

I still don't understand why a certain percentage is "seronegative." That could be a potentially serious problem.

LB

[mommida]

You learn how to copy your favorite gluten meals into safe gluten free meals!

Start with a gluten free cookbook to figure out your favorite flour replacer. Once you have that go back to your old cookbooks and pick the recipes with the least amount of flour.

I have been buying the restaurant recipe knock off books. Gluten free Bisquick has been pretty good. Pamela's pancake baking mix is great for baked goods.

Gluten free gets easier, just give yourself some time to adjust.

[sb2178]

"Sero-negative" just reflects an imperfect screening test. The blood tests correlate to badly damaged intestines, so if you are early in the process, it may not appear in the blood.

Partly, they set the standards a little high so that there are not false positives. The other part is that there is no perfect blood marker for most diseases. Rheumatoid arthritis, for example, also typically has a similar low seroneg population. Even something like iron deficiency can be tricky to catch using blood tests unless you order exactly the correct combos, which you only would if you were looking for it.

With really common diseases, like diabetes, they tend to set the standards in the other directions, so they capture people who are "normal" but have an abnormal screening test due to stress or something.

[GFinDC]

If you are taking an immno-suppressant you probably won't get a positive test for celiac. No point loading up on gluten for a test if you are taking a drug to suppress the immune system that you are trying to test.

If you really want to be tested you should go off your drugs (I don't recommend this though) and eat a good helping of gluten every day for 3 months. Then you "might" test positive on the blood antibodies, or you "might" test positive on the endoscopy.

Meanwhile you are damaging your body for 3 months on the chance that maybe you will test negative and be able to keep eating fast food junk.

But the tests for celiac are not 100% perfect and so you can't rely on them for an accurate diagnosis. Positive test results are pretty reliable, but I read the false negative rate is 30%.

You small intestine is about 22 feet long, and the "Gold standard" endoscopy can reach about 3 or 4 feet at the beginning. That leaves a lot of unexplored territory.

So with all those chances for a false negative, the only smart thing to do is try the diet anyway. For 3 months and stay away from all processed foods and no restaraunts at all. Staying off dairy and soy are also good to see if that helps. If you have Hashimotos' you shouldn't be eating soy anyhow, it is very bad for the thyroid.

[Takala]

I am going to be blunt with you.

I've already outlived one parent by ten years who died of liver failure. And I'm "sero - negative." I will never be diagnosed "officially" as a celiac. I currently have a PCP which acknowledges I am unofficially gluten intolerant.

I went off grains about 8 years ago, and slowly reintroduced some of them (other than rice) about 3 years ago.

Since that time of the initial diet makeover, which I initiated based on research, most of my symptoms of that MS they kept telling me I likely had went away, and my arthritis which was supposed to put me in a wheelchair, hasn't. My kidneys are now functioning properly. I have the feeling back in my hands, and my feet. I don't tip over and trip a lot, nor use a cane (maybe a hiking pole for that, but not always). I regained my color vision in one eye and lost the night blindness. And the last idjiotic, dishonest neuro I saw was very arrogant and insisted that there was no relationship between any of my symptoms and a diet with or without grain, even after I pulled my test results out of her office, because she wouldn't diagnose me after seeing brain lesions and saw I had ataxia. Nope, "all in the head" because of no bloodwork. Oh, and the arthritis ? I carry an x ray with me and a scan report if I see a new doctor, because otherwise they don't believe me because I am also sero negative for the common tests they run to see if you're arthritic. First they say "what drugs do you take" and then they say bend here and there and announce I don't have it. I have kept my range of motion so far by working on it every day for decades. They really can't grasp that somebody would do this.

I really don't see why you are still insisting on loading yourself up with gluten again for an "official" diagnosis at this point.

You don't need permission from any medical professional to alter your diet to be gluten free, it is not an essential nutrient. It seems you have been already encouraged to do this gluten free trial, based on your 'associated with gluten intolerant' auto immune problems, genetics, and symptoms. You will be able to then test your reaction to a gluten free diet- but it has to be an actual gluten free diet, not some half whittled- natural- organic- whatever low gluten routine, to have any effect, if that is what your problem is. But if you get yet another negative test result, where does that leave you other than months behind, still sick, and with another conundrum and negative reinforcement ?

"IBS" is not normal, no matter what "they" say.

[CatMommy]

Yes, I've read that IBS stands for "I'm Basically Stumped," what the doctor says after all the tests come up negative. My GI has a reason for everything: menopause, IBS, the Azathioprine, etc. etc. I asked what causes IBS? He said it's stress, or hormones, maybe. I insisted to him that is has to have an organic component, like a food intolerance. He then pronounced that everyone has something they can't digest. What?? For him, the case is closed. TTg negative = not celiac.

I'm really going to think about a trial diet. Is three months long enough?

Thanks everyone for taking time to answer my questions.

LB