What Is Wrong With Me?!

[wonder29]

Hi Everyone,

I am somewhat new to this site but have been lurking the forums lately in hopes of finding some answers. I will try to keep this short...

I am in college and have been dealing with stomach issues for as long as I can remember. About a year and a half ago I was putting two and two together and realizing that I was experiencing just about every celiac symptom in the book. I thought that maybe this was all in my head but my mom took me to get the blood test to see if we could get some answers. Later that week I got a phone call saying that I had elevated antibodies (I'm not really sure which one(s) because the nurse and doctor I saw were not very clear) and that an endoscopy was highly recommended. When I had the endoscopy done, however, the gastroenterologist said that I did not have celiac because there was no visible damage to the villi. I got the feeling that he didn't really take me seriously and he said to just attribute my symptoms to IBS (which he did not define or give me suggestions to alleviate the symptoms).

I know from avoiding gluten that I feel so much better both mentally and physically. It's not that I'm desperate for an "official" diagnosis, but I am just kind of frustrated that I never got a clear answer for what is wrong. I guess there are a couple of questions that have been on my mind lately as I continue to try to figure things out:

1. Is it true that I do not have celiac if my blood test was positive but my endoscopy was negative?

2. Even if I am just sensitive to gluten, is there still a possibility that eating gluten will lead to more serious consequences down the road? Having the mindset that I'm not celiac but just sensitive to gluten causes me to not be as careful about slip-ups here and there (although I always feel the effects of eating gluten afterwards) and I am just wondering if I should be more careful (if there are consequences more serious than just being uncomfortable).

Thank you SO much for any advice/help you are able to give. I REALLY appreciate it. :-)

[rosetapper23]

I hope you don't mind if I only respond to your first question, since I believe the second one is irrelevant since you almost assuredly have celiac. You see, false-negatives are common, but false-positives are rare.

Now, when you say that your gastro told you that you had no "visible" damage, was he referring to damage he might be able to see under a microscope? If not, he can't see villi damage with just his eyes. Did he biopsy tissue samples? And did he take at least eight such tissue samples? If not, then he may not have had enough samples to know if your villi are damaged or not. The damage could even be in an area of your small intestine that his scope could not reach.

One of the leading celiac experts in the world is Dr. Alessio Fasano, and, even though he used to recommend endoscopic biopsies as the "gold standard" for diagnosing celiac, he now believes that they are unreliable for a number of reasons. The biggest reason is that the skill of many gastros is questionable, and sometimes even the pathologists are not very good at diagnosing celiac. He has stated that if your bloodwork is positive, your symptoms resolve on a gluten-free diet, and they return when you reintroduce gluten, then you have celiac. Since this is probably the case with you, you'll need to avoid gluten completely. If not, you can end up with chronic nutritional deficiencies or neurological damage that sometimes does not resolve even after resuming a gluten-free diet. People with celiac can develop other auto-immune diseases, as well, so it's essential that you maintain a strict gluten-free diet.

You're lucky that you're still young--many of us now suffer from lifelong disabilities because doctors were clueless about celiac (many still are!). Also, there are a number of treatments on the horizon that may allow you to eat gluten again one day; however, in the interim, please try to maintain a healthful lifestyle (e.g., no gluten).

[biancanera]

I've noticed from me and my aunt's experience being diagnosed that we both had Celiac on the blood tests but not on the endoscopies either. However, my doctor told me plain and simple that the endoscopy isn't the best test, and the best way for me to know was to go entirely gluten free for weeks and see if my symptoms went away. And she was right! I suppose the biopsies can't target the damaged areas, especially if they're catching Celiac at an early stage when the damage might be minimal. Antibodies can't lie - they're fighting SOMETHING.

[wonder29]

Thank you so much to both of you for the wonderful advice. It helps me feel not so clueless about all of this. I really appreciate it!