Confused

[Moondanse]

I'm so confused (what else is new w/Celiac Disease, right??)

Without getting in to my entire history: I've had GI issues for the better part of the last 12 years. But, over the last year I've had continuous bloating and pain with very little relief. It got so bad that I was afraid to eat out because I would end up doubled over in pain and couldn't identify the trigger. I had suspicions that my GI issues were related to pasta. So, when I met with my new internist he did bloodwork. He called and told me that I tested positive for "antibodies" and that I had Celiac Disease. I mentioned that I thought that there were other tests that may be required to confirm the diagnosis and he told me he didn't think so.

He set me up with a gastroenterologist in his practice (for 2 weeks later) and told me to avoid gluten and wished me a "Happy New Year" and that was it. So, I was off on my own to figure out what to do next. I did a ton of research and started to modify my diet.

Today I met with the GI guy and he tells me that it's not a definitive Celiac diagnosis at this point. My Anti-Gliadin levels were elevated (30 & 35) but he didn't feel that they were typical of Celiac Disease. So, he wants to do another blood test and an endoscopy. Of course, I've already begun a gluten-free diet, so he couldn't do any more bloodwork today. So, I have the endoscopy and blood test in 2 1/2 weeks. During that time I have to return to my regular diet. He said that the IgA & IgG elevations could be due to IBS or Lactose Intolerance and not Celiac. Is this true?

So, now I'm utterly confused. I have to start eating gluten again and am left with the possiblity of another "catchall" diagnosis of IBS. I don't want Celiac Disease, however it definitely fits with my health history and makes sense. When the doctor told me I had Celiac, I actually felt like there was light at the end of the tunnel. Now, I'm feeling like I could hit another brick wall.

I read on this message board today that people's experiences regarding bloodwork/biopsy have been all over the place. So, I tend to think that his leaning towards IBS due to the fact that my antibodies aren't more elevated isn't completely substantiated. I've read about folks that had low/normal bloodwork, but positive biopsy. Or the opposite, extremely elevated antibody levels and a normal biopsy. So, what's the deal with this disease? It's so confusing!!!

Anything you can share would be greatly appreciated -- I understand this is a tough disease.

[Guhlia]

Welcome! Did you improve when you went on the gluten free diet? Do you need a positive diagnosis to maintain a gluten free lifestyle? I think the blood tests being positive should have been enough, but I'm not a doctor. I never had the biopsy and I'm positive that I have Celiac. I tried to go back on gluten to get a biopsy, but I got entirely too sick after the 3rd week and I just couldn't do it anymore.

[Electra]

He set me up with a gastroenterologist in his practice (for 2 weeks later) and told me to avoid gluten and wished me a "Happy New Year" and that was it. So, I was off on my own to figure out what to do next. I did a ton of research and started to modify my diet.

Did you check with your internist again? Maybe he should send you to another GI doctor if he thinks you have it but the GI doctor wants you to have to make yourself sick again.

Man it upsets me that a doctor would tell you that you have something and to stop eating gluten and then another doctor in the same practice would tell you to go back on gluten because you may not have it. What in the heck is up with these doctors. Why in the world are they so dead against diagnosing what is so obvious. If you had positive blood tests and respond to the diet then you are definitely positive. What more do they need grrrrrrrrrrrrrrr (sorry about that rant, but I had to get it off my chest)!!

[Nantzie]

In my case, my blood work AND my biopsy were all negative. I just tried the diet based on advice I got here. When I did, 18 years of GI symptoms, fibromyalgia-type pain so bad I could barely walk, headaches, insomnia, nightmares, exhaustion, etc., etc., etc. all went away.

In my opinion the ONLY valid test of a gluten problem is the diet. Period.

I think medical testing is very important though. Because you want to make sure it's nothing else that may be more scary, or may be a condition that needs a slightly different diet. A lot of people here choose not to pursue a diagnosis though, so it's a personal decision.

According to our latest informal poll here, over half of the people here don't have a celiac diagnosis. Some never did testing, some had inconclusive tests and some had negative tests. So there's no reason at all you have to have a diagnosis to join us here.

Welcome!

Nancy

[happygirl]

Hey Moon,

Welcome to the board! Happy you have found this site.

It is definitely understandable that you are quite confused. It is frustrating to Celiacs/those trying to figure this whole thing out when the medical community knows little to nothing about Celiac.

So, let's see...where can we help?

You were right...there are other tests that should have been run, including the very sensitive tTG. Yes, people's experiences are all over the spectrum. Some of us have positive bloodwork/positive biopsy, some have one, some have none. We have all made different choices, but the end result was the same: we do better on a gluten free diet, whether Celiac Disease, non-Celiac gluten intolerant, wheat/gluten allergy, or no official diagnosis.

You won't have villous atrophy (the classic diagnostic tool, when your villi in your smal intestine are "blunted" by Celiac) due to IBS or lactose intolerance. You could have a clean biopsy but that doesn't mean you *don't* have Celiac.

Some on here would say, don't worry about the bloodtest/biopsy, you already have some evidence that you have a problem with gluten. Others would argue that its *only* 2.5 weeks away, and would be worth having the diagnosis if you could have it (versus never having a diagnosis, or 'having' to go back on a gluten filled diet years down the road). 2.5 weeks in the large scheme of things is a small amount of time.

That being said: here are things you need to know/think about.

Make sure that they run the FULL Celiac blood panel, including the tTG. You will have to talk to them directly and ask them if they are running this test. Double check to make sure they aren't. There are so many people who come back and say they ony ran the aga IgG and IgA, even though they asked.

Talk to your GI to ensure that he takes multiple biopsies in multiple sites. Celiac is a patchy disease. One part could be damaged and one inch away could not be. So taking "one" biopsy and saying you don't have celiac disease is not definitive at ALL. Taking more biopsies (multiple biopsies in multiple sites) ensures a higher rate of catching it. Again, talk directly to your GI about this. Many people only have 1 biopsy taken because their doctors are uneducated about Celiac...and then "definitively" tell the patient they don't have Celiac.

Make sure that you are eating gluten for these 2.5 weeks. You are supposed to be eating a good amount of gluten for 3-4 months beforehand, so keep this in mind.

Regardless of the results of your upcoming tests, I think most on this board would recommend going gluten free immediately, and not waiting for the results of your tests. However, your doctor will probably not agree with this. Most in the medical community say NOT to do the diet unless you are a diagnosed Celiac (for various reasons, including that the diet is "too" hard). There is no harm in going gluten free. I think that your initial bloodwork and your symptoms indicate that you do have some sort of problem with gluten. Also keep in mind that you could be non-Celiac gluten sensitive/intolerant, in which you will not have damage. So, your doctor could come back and say, You don't have it! They know little about Celiac, and even less about non-Celiac gluten problems.

I'll admit: the learning curve for this diet is pretty steep. However, once you get it, you get it! Luckily, you have this board here to help. It is a great site and full of people who live with it every day. If we all can do it (and trust me, we all started out where you are!), I promise you can. It is a strange disease, but on the other hand, I'd rather have this than any other autoimmune disorder where they don't know "what" the problem is. We know gluten is our problem....we take it out of our diet, and after our bodies heal, in general, we are "normal." We do normal things: hold jobs, date/marry, go out, etc. As long as we aren't ingesting gluten, the autoimmune reaction is NOT occurring (once you are healed). I think that's a pretty great thing to be able to say. I like being able to be in control of my health.

Hope this helps. Let us know what we can do.

Laura

[GlutenWrangler]

If you feel better off of gluten, don't worry about negative blood tests. Doctors don't always have the answers.

-Brian

[Moondanse]

Thanks to everyone who responded. It's very nice to have some support from people who have already gone through this. I just get so tired of fighting with doctors and essentially doing their job for them -- if they had it their way all these years, I would have resigned to their diagnosis of depression and never pushed back. So, yesterday I was feeling defeated once again. Your feedback has helped.

I am going to try to eat 'normal' for the next couple of weeks, just to see if I can get to the biopsy. I figure that I've lived for 30 years eating gluten, so two weeks shouldn't be too difficult. After that, regardless of the results, I'm going to continue on the gluten-free journey that I started. I will keep you posted.

I've only modified my diet for the last two weeks (not without error either) -- so if I can deal with the next couple of weeks adding gluten back in to my diet, I should be okay for the biopsy, right? It's not like I've been gluten free for several weeks or months. I did read that it can take as few as seven days to start feeling better, but I also read that it can take up to two years to repair intestinal damage. It would be nice to have some validation from the medical community, though I don't necessarily need it.

Oh and to answer Laura's question -- the doctor is going to do the tTG -- that is the one test that they did not run originally. I'm just curious if anything other than gluten intolerance would cause elevated IgA & IgG levels? Like I said, he told me that IBS or Lactose Intolerance would cause elevated levels, but I can't find anything to support that. I'm not saying he's wrong, I just like to be able to confirm information.

Thanks again for all of your feedback and support. It means a lot.

Kelli

[Electra]

I'm just curious if anything other than gluten intolerance would cause elevated IgA & IgG levels?

I've been wondering the same thing, but have been way too busy with appointments and other research that I haven't had time to even check it out on the net yet. I sure hope there is someone on the board that can lend some insight here!! I have an appointment with my GI specialist tomorrow and if there is nothing else that would cause those elevations then I need to be armed with info to prove that. I guess I'll be researching this morning before my daughter has to go to her appointment.

[Jestgar]

Tell him you think you have heart disease too so you'd like to start eating deep-fried cheese sticks to get your arteries good and clogged before they do an angiogram.

[Nancym]

IBS actually stands for I-don't-really-know-so-I'll-make-up-some-BS.

Go heavy on the gluten until your endoscopy, like at least 3-4 slices of bread per day. Hopefully you won't heal up. But even if your endoscopy and biopsy comes back negative, try out the gluten-free (and perhaps CF) diet and see if it helps. I really think IBS is due to food intolerances in many cases but this isn't something that can be pinned down via blood tests, so doctors don't really want to deal with things as vague as that.

Good luck to you!

[jayhawkmom]

IBS actually stands for I-don't-really-know-so-I'll-make-up-some-BS.

Oh, that was just too funny!!!!

From what I've found... elevated IgG and IgA levels could be indicative of "other leaky gut issues."

From the American Celiac Disease Alliance:

Antigliadin antibodies

The antigliadin antibodies IgG and IgA recognize a small piece of the gluten protein called gliadin. These antibodies became available during the late 1970’s and were the first step towards recognizing CELIAC DISEASE as an autoimmune disorder. Antigliadin IgG has good sensitivity, while antigliadin IgA has good specificity, and therefore their combined use provided the first reliable screening test for CELIAC DISEASE. Unfortunately, many normal individuals without CELIAC DISEASE will have an elevated antigliadin IgG, causing much confusion among physicians. The antigliadin IgG is useful in screening individuals who are IgA deficient, as the other antibodies used for routine screening are usually of the IgA class. It is thought that 0.2-0.4% of the general population has selective IgA deficiency, while 2 to 3% or more of celiacs are IgA deficient.

If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. Younger children make less IgA than older children and adults. A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases. These antibodies may also be slightly elevated in individuals with no obvious disease.

A strength of the antigliadin antibodies is that they are ELISA tests. ELISA is an abbreviation for “enzyme-linked immunosorbent assay”. This is a rapid immunochemical test that involves an enzyme, which a protein that causes a biochemical reaction. An ELISA test also involves an antibody or antigen. ELISA tests are utilized to detect substances that have antigenic properties, primarily proteins, such as gliadin. The importance of an ELISA test is that is it rapid, inexpensive, and run by a machine. Thus the results are independent of observer variability. The TTG test is also an ELISA test. This is in contrast to the antiendomysial IgA, where a slide has to be made, and a person has to look at it through a microscope. These are more prone to human error.

Open Original Shared Link

I realize that doesn't really elaborate on BOTH elevated IgG & IgA levels, but I thought it was worth reading.

[Moondanse]

Jayhawk -- thank you so much for that link. It explains in that link that those two tests, IgA & IgG, are specific to gluten. Therefore, the doctor telling me that the positive test results could be due to IBS or Lactose intolerance is completely bogus!! ARGH!! What the heck is wrong with these doctors??? Seriously, this frustrates me even further. I'll have to print this out and bring it to my next appointment.

By the way, I started eating gluten last night and just got sick for the first time in two weeks. This is going to be a loooong 2 1/2 weeks.

[Moondanse]

Update:

I spoke with the nurse yesterday at my GI's office and explained that two days back on gluten and I'm worse than I was before. She spoke with the doc and called back to tell me that the doctor say's to "eat whatever you want." If gluten is making me sick, don't eat it. Ok, but that goes against the reason he asked me to eat it again in the first place. She called me today to tell me that the doctor doesn't care when I have my endoscopy, so she rescheduled for Monday afternoon. So, I just have to make it through the weekend with this terribly upset stomach and nausea. I just feel like the doctor isn't taking it seriously (eat whatever you want, have your endoscopy whenever you can). It's a little strange. I guess I'll see how he is on Monday when I have the procedure. I'm trying to withold negative thoughts about him unless I have good reason.

I know there is a ton of discussion on this board in regard to how quickly the intestine repairs when you go gluten-free. I'm holding on to the hope that it takes months, not days. The additional blood test that he wants to run (TTG) may get messed up though. I'm just going to eat as much gluten as I can stand through the weekend and keep my fingers crossed.

[Electra]

Update:

I spoke with the nurse yesterday at my GI's office and explained that two days back on gluten and I'm worse than I was before. She spoke with the doc and called back to tell me that the doctor say's to "eat whatever you want." If gluten is making me sick, don't eat it. Ok, but that goes against the reason he asked me to eat it again in the first place. She called me today to tell me that the doctor doesn't care when I have my endoscopy, so she rescheduled for Monday afternoon. So, I just have to make it through the weekend with this terribly upset stomach and nausea. I just feel like the doctor isn't taking it seriously (eat whatever you want, have your endoscopy whenever you can). It's a little strange. I guess I'll see how he is on Monday when I have the procedure. I'm trying to withold negative thoughts about him unless I have good reason.

I know there is a ton of discussion on this board in regard to how quickly the intestine repairs when you go gluten-free. I'm holding on to the hope that it takes months, not days. The additional blood test that he wants to run (TTG) may get messed up though. I'm just going to eat as much gluten as I can stand through the weekend and keep my fingers crossed.

Mine is Monday afternoon too LOL. How weird is that !! We'll be sitting there ready to go under thinking about how the other is doing hehe!! Good Luck. I can't bring myself to eat gluten and I don't really think it would do any good after being gluten free for 4 weeks. I'm just hoping they get a positive biopsy so we have a definite answer and I don't have to worry about what could happen if I ever need a dr. change.

Best of luck to you!!

[Moondanse]

Good luck tomorrow Angie!!!