Negative Biopsy - Why Am I Disappointed?

[muffins]

Why am I disappointed to have normal biopsy results? Or am I just pissed at my doctor who urged me to go on a gluten free diet before I had a definitive diagnosis? After I had already done the gluten-free diet for about two months, I was referred to a GI doctor. The GI doctor didn

[*lee-lee*]

i'm curious...what prompted the trips to the doctor if you didn't have any symptoms?

[muffins]

i'm curious...what prompted the trips to the doctor if you didn't have any symptoms?

I went to a different GP because I had symptoms of fatigue and depression, which I figured were thyroid related. I was diagnosed with Graves disease in 1999, had a thyroidectomy in 2001 (no thyroid now), and was unhappy with my current thyroid medication. I was fed up with my endocrinologist so I found the name of a GP who also practices alternative medicine. He prescribes natural dessicated thyroid meds which I wanted to try. The majority of doctors will only prescribe the synthetic thyroid drugs. While I had my consult with this doctor, some symptom I mentioned prompted him to suggest testing for celiac along with the other bloodwork I was to have done. I have since read that there is a connection between Graves disease & celiac.

[*lee-lee*]

did they run a celiac panel before you were referred to the GI (and before you started gluten-free)? that would have shown elevated antibodies if you do have Celiac.

[ShayFL]

Seems you have 2 choices: Keep eating gluten for the 2 - 3 months and stay depressed and tired. But go for a gold star dx.

Or eat gluten-free for those 2 - 3 months and see if your fatigue and depression deosnt lift. You may find that other things improve as well (that you were not aware of were a problem because the fatigue and depression can take over).

There is a strong connection between Celiac and other auto-immune diseases like Graves and Hashi's.

[muffins]

Yes, I had an elevated tTG level of 99. This test was done after showing a positive result for some other antibody test (not sure what it was).

Tough choices. It should be a no-brainer. I hate switching back & forth between the two diets. It makes it difficult to determine what effect it is having. Is it possible to have a false positive because I have Graves? Or is the tTG level too elevated from the norm?

[ShayFL]

You should have a full Celiac panel done. Some say that it could be elevated due to other auto-immune diseases and that is why you should also have EMA:

Diagnosis of celiac disease

There is no test yet which is definitively diagnostic of celiac disease. Relief of symptoms or reversion of an abnormal intestinal biopsy to normal on a gluten-free diet is the most convincing evidence that an individual has celiac disease or gluten sensitivity. Intestinal biopsies as discussed above show characteristic findings compatible with celiac disease but are obtained just as often to exclude other intestinal conditions, most importantly infection, which can have a clinical presentation similar to celiac disease.

The first serologic marker reported to be of use in the diagnosis of celiac disease was the IgG class antigliadin antibody (AGA). Though sensitive, this antibody is also found in other diseases and is therefore not specific for celiac disease. IgA class AGA is more specific, however about 2 % of patients with celiac disease have selective IgA deficiency. A positive IgG and IgA AGA gives a reported sensitivity of 96 % to100 % and specificity of 96 % to 97 %. If only the IgG AGA is positive an evaluation for selective IgA deficiency should be undertaken. Antireticulin antibodies (ARA) have also been reported in individuals with celiac disease, but are nonspecific. IgG ARA is relatively useless, but IgA ARA has a high sensitivity and specificity in adults (97 % and 98 % respectively). In children these values are much lower. Recently two antibodies, IgA class antiendomysial antibody (EMA) and human jejunal antibody (JAB), have been identified which are highly sensitive and specific for active celiac disease (100 % sensitivity and specificity reported in one study). The one best characterized is the EMA, an antibody against endomysium reticulin fibers. In adult studies, EMA was only found in patients with active celiac disease and not other diseases. The test is less powerful in children as EMAs have been detected in other childhood diseases. The more important limitation of EMAs in children is the reported fall in sensitivity observed in children with celiac disease less than 2 years old. Even the EMA and JAB antibody tests in adults are not fool proof as they may not be positive in individuals with celiac disease and IgA deficiency.

A panel of these antibodies seems to be most useful in the diagnosis of celiac disease. A combination of IgG AGA, IgA AGA and EMA have a reported positive predictive value of 99.3 % when all were positive and a negative predictive value of 99.6 % when all were negative. These antibodies tend to lessen or disappear when individuals are maintained on a gluten-free diet. Antibody testing is important in screening individuals who are at risk for having celiac disease but have no symptomatology, in individuals with atypical symptoms or extraintestinal manifestations of celiac disease, and in individuals with presumed celiac disease who fail to respond to a gluten-free diet. Patients with postive antibody tests must undergo small intestinal biopsy to confirm the diagnosis and assess the degree of mucosal involvement.

[Fiddle-Faddle]

I'm not sure what blood tests you had done for celiac, but it seems to me that if they DID indicate that you are making antibodies to gluten, that is enough of an answer right there.

Healthy, normal people do not make antibodies to gluten.

If you do have celiac, or even gluten intolerance, then you might have a malabsorption problem (very common, almost universal amongst celiacs)--this would explain why your thyroid meds weren't working, as you might not have been properly absorbing them!

I'm guessing that the natural dessicated thyroid med absorbs far more quickly than the Synthroid, which would be why so many celiacs seem to do better with it.

In my own experience, I did NOT do well with Synthroid until I went off gluten, and then it was amazing how much better I did! I was able to decrease my dosage by 50% over several months (dosage indicated by bloodwork).

Of course, that's only my experience, and everyone is different.

So, like Shay says, you can either go for the offical MD Dx, or try the diet immediately and see if the tiredness and other symptoms improve.

I'd vote for the diet. You can jump through all the medical hoops, have a totally negative diagnosis--yet still be celiac.

Besides, it's a healthy diet.

[muffins]

I should find out what the other blood test was for. The GP did say that it was positive and confirmed the results of the tTG test. According to him, gluten is toxic and that should be reason enough to eliminate it from my diet. Whereas, the GI doctor is reluctant to diagnose celiac, or even recommend a gluten-free diet, without the positive biopsy. Why are doctors so reluctant to put a label on it? What harm can it do? Fear that a patient might sue for subjecting them to a gluten-free diet? Or is conventional medicine to blame? I really don

[hawaiimama]

I sent you a private message.

[Fiddle-Faddle]

My big additional expense is TIME, but not as much as I would have thought.

I make breads, pizzas, cookies, cakes, etc. from scratch.

I use an adaptation of the gluten-free flax skillet bread (on this website), and my kids love it. I make it in mini 4" cake pans, which makes them perfectly hamburger bun size, and I make a dozen at a time. I make bread roughly twice a week. We use corn tortillas as wraps, too.

I make rice in a rice cooker, 5 or 6 cups at a time.

We don't go out to eat hardly at all now--maybe once every month or two--HUGE savings there!

The pizzas I make from corn tortillas--HUGE savings there, too. And we eat less bread and fewer cookies than we used to, so all in all, hopefully we're healthier, too.

I know how you feel, though--I cried for 2 days when I was diagnosed. But it really was easier than I'd anticipated--and MUCH tastier!

[muffins]

I did try a couple gluten-free products which were quite tasty. It takes some getting used to the different texture though.

I'll have to try that flax bread recipe. I expect I'll want to do my own baking after I get more familiar with the gluten-free ingredients.

I've decided to go on a gluten binge for the next 2 weeks. Then see how I feel and decide if I want to bother with more tests. I think I may have some symptoms now that I didn't attribute to gluten before. After just two days, I been noticing more of a buddha belly. Hopefully, I won't burst at the seams after two weeks.