Celiac's? Not Exactly...

[RunnerNYC]

For once in my life, this business of western medicine seems to be helping me.

I guess I was convinced I had to have some sort of food intolerance-gluten, lactose, soy. Maybe I even hoped I did. My blood tests and biopsy came back negative for celiac's disease, but we know that's not evidence enough to rule out a food sensitivity.

I recently went to have an MRI (once my insurance finally decided that weight loss, malabsorption, and chronic pain were a good enough reason to approve it). It turns out that my "celiac artery" is being blocked by the median arcuate ligament (a ligament somewhere in the vicinity of the diaphragm?) and this is cutting off a good portion of the blood supply to my digestive system-causing the pain, the malabsorption. Well, we knew it had to be celiac's something or other... (okay, am I the only one that finds this funny?).

If this really is the whole story, then my problems are not food-related at all and cutting the ligament should alleviate my symptoms. It was anatomical-maybe I was born with it and it just worsened now. (If the symptoms don't go away, I'll probably be back trying another food elimination.)

I am a little disappointed that the problem is out of my own control. Nothing I eat or don't eat could cure this particular ailment; nor will any magic supplements or yoga positions (believe me, I've tried).

I am also a little disappointed that I won't really be a part of this caring online-support group. I learned a lot about living with food sensitivities and an how many of you have had the courage to nourish yourselves back to health.

Oh yeah, and if, after awhile, your symptoms just don't go away, I would recommend going back to a (really good) doctor!

[MySuicidalTurtle]

Wow, I wish you the best RunnerNYC.

[mouse]

You can still come back and let us know how the operation went. Congratulations on finding out what the problem was.

[Nancym]

Well it is a good reminder to us that not everything that looks like celiac is celiac!

After your surgery and recuperation, you might still want to try the gluten-free diet and see if it adds anything to your health, if you're so inclined.

[gfp]

Well at least its treatable

Anyway, just because ots not you doesn't mean you can't keep spreading the word

Also I think your observation that its frustrating because its not something you can control is a very good one.

[Corkdarrr]

I'm glad they figured it out!

SERIOUS it is called the celiac's artery? That's too funny.

Good luck!

[RunnerNYC]

Thanks for your support! I'll let you know how it goes- and, even though I'm not well enough to tell how exactly being gluten free affects me, I'm interested to know how it would. I do think I feel more alert. ...And, spreading the word IS important- I agree. People have never heard of gluten-sensitivity, but once they do, I think most want to know more about it. It seems like a good portion of restaurant chefs in the city and Brooklyn are starting to get it (Babycakes is the best bakery I've been to gluten-free or not).

[jenvan]

Wow--so glad they caught that!

Here is some info on that artery Open Original Shared Link

[gary]

Hey runnerNYC,

If you don't mind me asking what were your symptoms? I would really like to know because I've been having problems for about 2 years now without any luck. My symptoms are that my entire system seems to seize up at times. The doctors keep telling me that it is just constipation, but that can't be possible. My entire system at times will cramp up and not allow anything through. Sometimes it gets very painful, but I've tried to whole gluten free, dairy free thing with not much luck. I was convinced at one time that I was a celiac but as time goes on with this diet and not seeing much of a difference, it makes me wonder whether or not that's the case at all. I'd appreciate any help you can give me about this. Like when did it start and how did it start, was it very severe at first or not, did it get worse?

Thanks,

Gary

[JenKuz]

RunnerNYC,

It looks like all us undiagnosed folks have questions! Did the doctors give you an indication of how common this thing is and what can cause it? Like, if you had a sudden jolt like getting in a car accident or throwing yourself off a cliff tied to the end of a rope? (Not that I would *ever* do anything so silly... ) Could that do something like jostling things about and getting them tied up? I was just thinking about dogs whose stomachs flip from a jolt. Maybe something similar (and less fatal...or less immediately fatal) could happen in humans.

[AndreaB]

Celiac artery......well you were half right.

Please keep us posted on how the surgery goes etc.

[debmidge]

Runner NYC,

yes, please give us updates and as someone else asked, how does a problem like this occur? What other symptoms does it give? I would imagine that you had a lot of gastric pain around your liver and bile duct. What symptoms did it present? You have shed another light on this subject for all of us.

D.

[RunnerNYC]

Symptoms...Well, it seems they were similar to celiac's disease in some ways.

I'm not quite sure much about how common this problem is. Just from browing the web, it seems like a high percentage of people may have some blockage, but for there to be problems from it, it is more rare. I'm going this week for an MR angiogram that will give more information I guess.

About 2 years ago, I started to have a cramping pain in my side and I also felt fatigued. I didn't necessarily think the fatigue was related to the cramping. A blood test showed anemia and + h.pylori. I was treated with iron supplements and (really strong) antibiotics for a suspected ulcer. The iron helped the fatigue, but I still had the pain.

Later on, I had lost about 5 or 8 pounds (and I'm pretty small to begin with). I tried to gain some weight (reduced the running a whole lot), but wasn't able to. I began to have really bad pains, distention, bloating and other "IBS" type things with eating. I had other deficiencies (vit D, etc). My doctor suspected celiacs and I had blood tests and biopsy come back negative. A stool test showed I had malabsorption (not good for marathon running). I went gluten free for a few months anyway and since I would feel worse on certain days and better on some, I thought it was possible that it was related to what kind of food I was eating. The doctor was going to order a colonoscopy and test for crohn's, but I went for the MRI when that was approved.

I'm not sure what caused the problem to present now and not years before. I had been told in the past (years ago) that I had IBS, so it could be that any problems I had before I had just attributed it to that. I don't know what kind of stresses would make it worse. Anyway, at some point though, you know you're treating yourself well (eating right, sleeping, exercising) and its just not "IBS".

I hope that all the undiagnosed people perservere through the medical or non-medical tests, elimination diets, etc until you find what's wrong be it biological or anatomical.

[Lymetoo]

So, was it an MRI of the gut????

[RunnerNYC]

Yep, abdominal MRI with and without contrast