To Test Or Not To Test..

[Gina C.]

Hello all!

I am more and more confused. I went to see an "NP" on Saturday at a digestive center that specializes in celiac disease (her children both have it).

I gave her my enterolab results and she pretty much dismissed it and said it was of no value. She did say that I have a gene for celiac and crohns (??).

She wants to test me to rule out these conditions. She wants to do a small intestinal x-ray and endoscopy and then the capsular endocopy (capsule w/ camera). She states that she cannot do the capsular until the endoscopy is done first due to insurance compnay guidelines and she wants to also take 6 biopsies.

Since I have been gluten free for 4 months now, it makes diagnosis very hard. I don't want to go back on gluten and I am terrified of doing the endoscopy.

I don't know what to do! I would hate to put myself through the endoscope for it only to come back clean or inconclusive (do to being off gluten x4 months) and then I will still second-guess whether I have an issue.

I doubt that I have crohns disease.. it does not run in my family and my symptoms are the opposite of crohns (I have(had- better since gluten-free) chronic constipation and trouble with maintaining my weight I gain weight too easily.

So I am trying to figure out if it is worth the stress to do the endoscopy. perhaps I could just do the small xray and blood work (but I know that the NP will not be happy if I decline the endoscopy- she was really pushing for it).

All I know is that I went to a wedding this past weekend and I asked the chef personally if there was any wheat or gluten in the prime rib meal I was to have. He stated that there was not. All I ate was the greenbeans and carrots (very small portion) and a tiny bit of the prime rib w/ au jus and a 1/2 forkful of the mashed potatoes and almost immediately I felt my tummy bubbling and then came the stomach pains, slight nausea and bloating with gas... I guess I was glutened?? Should this be enough to tell me to stay off the gluten for good?

I appreciate you reading through this topic and any comments (good or bad) would be greatly appreciated.

Thanks!

Gina

[Fiddle-Faddle]

Are you symptoms much, much better gluten-free?

If so, I'd say skip the official diagnosis. If not, then it might be a good idea to see what IS going on in there, though I question your doctor's sense if she thinks she can diagnose celiac after you've been gluten-free for 4 months, or if she thinks that you should re-damage yourself so she can run expensive tests.

As for the dinner, the beef or green beans might have been marinated in wheat-containing soy sauce, or somebody may have dropped bread crumbs in one of the serving dishes inadvertently. I would assume that the mashed potatoes were made from scratch, but if they used a mix to "bulk it up," it might have contained wheat flour or wheat starch--I have seen mixes with dried potato buds that contained gluten.

[Gina C.]

Hi,

Thank you for your response..

I called the country club and spoke with the head caterer who spoke with the chef who insisted that the meal I had was gluten free and could in no way become cc.

Who knows why it happened to me. I am still convinced there was something in there the chef wasn't aware of that had gluten in it. He stated that the au jus was just drippings from the meat without any thickeners added. Who knows?

But to answer your questions, yes I do feel better (I have to keep reminding myself that). Where before I was chronically constipated, I am now more regular. The heart palpitations stopped (who would have thought it could be related??) as well as a few other digestive issues I used to face and just accept as "normal".

Thank you so much for your replies.

Gina

[ShayFL]

It is a hard decision to make. I did the blood, but refused biopsy. I am at high risk for perforation due to adhesions, so I didnt want to do it. I also did genetic tests and Enterolab. Blood was Neg for me. Enterolab was POS for Gluten Intolerance and I had 2 Gluten Intolerant related genes. That and now a POS response to the diet is enough for me.

[CMCM]

My mom was diagnosed with celiac disease 40 years ago. She was deathly sick at the time of diagnosis (it was very difficult to diagnose in the 1960's, most doctors were ignorant about celiac disease). She was at the time told that about 1 in 10,000 people might have celiac disease, and her 4 children were at risk but not that great a risk of having it too. Since I was never sick in the way she was, I never gave it a thought. HOWEVER.....I had "digestive issues" my whole life....I mostly attributed it to dairy, and never suspected that I might have celiac disease or gluten sensitivity.

At age 55 I started having a lot of symptoms and in researching those, I found this and other sites and became knowledgeable about celiac disease. I bought and read a ton of books on the subject, and realized a LOT of my lifelong health issues (digestive stuff, migraines, asthma like symptoms, and more lately, joint aches, weird rashes, dizziness) could be associated with celiac disease.

At the point where I wanted to get tested, I had so severely minimized my gluten consumption that I KNEW my blood tests would likely reveal nothing. And they didn't. So I did the Enterolab tests....found I have the celiac gene, and according to them, my stool test revealed autoimmune activity. So perhaps this isn't fully accepted by SOME doctors as a definitive diagnosis, but there are definitely others out there who specialize in celiac disease who take the stool tests very seriously. Because your particular NP or other doctor negates the value of the stool test does NOT mean the stool test is worthless. Perhaps your doctor has not done adequate recent research on the subject. My own personal experience has been that most doctors I've encountered who "knew a bit" about celiac disease, actually knew a lot less than I did. One of my doctors even admitted that!

In any case, going gluten free made a huge difference in my health and my various health issues mostly went away. That alone is pretty revealing, whether or not I have a "firm" diagnosis based on traditional medical definitions (which are, in many cases, strikingly outmoded in terms of data out there). There are some celiac researchers out there who want to redefine the whole syndrome as "gluten sensitivity", with a range of symptoms and damage. Celiac disease, occurring primarily if you have a predisposing gene, is the most extreme reaction on the spectrum, but reactions can be all over the place from celiac disease on one end to "silent" celiac disease (no remarkable symptoms but intestinal damage is nevertheless occurring inside). As "Dangerous Grains" pointed out, sometimes the first clue someone has that they have celiac disease is that they are diagnosed with some sort of intestinal cancer. And I'm reading more and more about the observations that even in the absence of a celiac gene and celiac disease, gluten sensitivity can do damage inside the body.

After all the reading I've done, I'm convinced that quite large numbers of Americans suffer from some degree of gluten sensitivity, and some of these are also celiac. But celiac or not, most of them have symptoms and this could help account for the high degree of ailments such as migraines, diabetes in younger and younger people, IBS type ailments, arthritis, lupus and so on. I don't think the human digestive system has had sufficient time to adapt to gluten, and probably most people would benefit from eating little or none of it.

Try to convince people in this gluten addicted world! Basically, you have to get sick....sick enough to want to change your eating and eliminate gluten. It's hard to do. Even with my own personal evidence, it's HARD to stay on track. I guess there's some validity to the argument for testing via endoscopy, but for me, I'd have to spend months eating a lot of gluten to re-create all the worst reactions just so my blood would test positive and I'd create observable gut damage. I just don't want to do that, but as I said, I might have an easier time with the diet if I knew for sure rather than from conjecture. I guess we all want a medically accepted affirmation. I wish Dr. Fine of Enterolab would do proper peer reviewed studies so his testing methods might gain wider acceptance. I have to wonder why he has not done this even after all these years of testing and supposedly collecting evidence. Also, you would think that with all his test subjects he would do follow-up work.....i.e. "You tested positive, you eliminated gluten, tell me what changed and by the way, I'd like to re-test you to see if antibodies are still in evidence." But after the test, you never hear from him again. This bothers me....and while he has said for years he will publish his findings, he has yet to do so. How hard could that be? He has had a lot of test subjects to draw upon!

[Gina C.]

Thank you all so much for your input.

wel... I had teh blood test that tt\he NP wanted me to have done last friday and went for the small bowel xray yesterday.

i have an appt with her again on 10/18... we'll see what she says.

I know that she is going to push hard for me to have the endoscopy and I will not do it. The radiologist yesterday stated that I definitely did not have crohn's disease (the NP thought I might- I never thought I did since I have no symptoms associated with crohn's). Since that has been ruled out, I will not do the endoscopy because I know that it will come back either negative or inconclusive since I have been off gluten since mid-may.

Thank you all so much for all your support. It is tough to keep to this diet (going to my mom's tonight and she is making a big pot of sauce with homemade pasta and I can't have any! ). So sometimes I feel like I need that "official " diagnosis to keep me going.

But like CMCM just stated, most of the doctors out there are poorly educated on celiac and especially gluten intolerance. I think I will stick with it and continue my own research.

This site is wonderful!

[henny]

I am new to this but I am not going to pursue testing/diagnosis.

As long as the diet works for me, why go through the stress, expense, and discomfort of testing?

My husband put it to me this way: If you did get tested, and it came back negative, would you start eating gluten? NO WAY. So a diagnosis won't do anything for me except empty my wallet.

good luck with your decision, and follow your gut (pun intended!) - this is such a strange journey for everyone!

[Fiddle-Faddle]

It is tough to keep to this diet (going to my mom's tonight and she is making a big pot of sauce with homemade pasta and I can't have any! ).

Is your mom's sauce gluten-free? Could you bring a pot of your own gluten-free pasta, tossed with a little butter or olive oil or even a can of diced tomatoes to keep it from sticking, and then sauce it with your mom's sauce? (Just make sure she doesn't add water from the pasta pot to the sauce, or, if she wants to do that, ask her to set aside some of the sauce for you before she does so.)

[Amyleigh0007]

The heart palpitations stopped (who would have thought it could be related??)

I used to have these too. They went away when I went gluten free.