[dagreen]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

[Fiddle-Faddle]

I did a quickie search, and didn't see any reference to either celiac or "Nutcracker Syndrome" in the descriptions. I'll keep searching...

[Anonymousgurl]

wow....i HAVE it. My jaw dropped when I saw the title of your post. I just can't believe that someone else out there has it..let alone even KNOWS about it! I can't find any information on it either....it's like this mysterious condition I guess. It's so frusterating.

I actually truly believe that it's food allergy related, but the doctor who diagnosed me with it (who was a real jerk) told me that it only happens to people who are anorexic, therefore he diagnosed me with anorexia. I totally wasn't anorexic at all...so that was pretty difficult to deal with. But ANYWAYS....

I know it can be painful...are you dealing with it okay? I really hope you feel better soon.

[dagreen]

Thanks fiddle- faddle for searching. I appreciate it. peacenlove_girl17, I can't believe you have it too. I'm not anorexic either, but I am small. Researching it on the Internet, I have read that it mostly happens to leaner people. I have found out a lot of information from google and yahoo, but not that much information in relation to celiac disease. Also with the Internet, it is hard to tell what is true and what isn't. I'm dealing with it okay, but as you probably know, it is incredibly frustrating and painful when I eat. I only eat 10 or 11 foods. How long have you had it and how did you get diagnosed? I just found out about it recently from having a CT enterography, and I haven't got too much information from my doctor yet. Not all doctors really believe it exists. It's good to know that I'm not alone. How are you feeling?

[Fiddle-Faddle]

Hi, Danielle,

From the links I found, it sure looks like "Nutcracker Syndrome" is totally different from Superior Mesenteric Artery Syndrome. Weird, huh? So either the info on the links I found are wrong, or your doctor is. Or maybe both are wrong? I dunno, it's way beyond my scope of knowledge. Sorry I'm not more helpful.

Any possibility that this could be Lyme-disease related? (Just a shot in the dark, but you never know...)

[Anonymousgurl]

dagreen, on May 20 2007, 06:52 PM, said:

Thanks fiddle- faddle for searching. I appreciate it. peacenlove_girl17, I can't believe you have it too. I'm not anorexic either, but I am small. Researching it on the Internet, I have read that it mostly happens to leaner people. I have found out a lot of information from google and yahoo, but not that much information in relation to celiac disease. Also with the Internet, it is hard to tell what is true and what isn't. I'm dealing with it okay, but as you probably know, it is incredibly frustrating and painful when I eat. I only eat 10 or 11 foods. How long have you had it and how did you get diagnosed? I just found out about it recently from having a CT enterography, and I haven't got too much information from my doctor yet. Not all doctors really believe it exists. It's good to know that I'm not alone. How are you feeling?

Fiddle-Faddle, on May 20 2007, 08:44 PM, said:

Hi, Danielle,

From the links I found, it sure looks like "Nutcracker Syndrome" is totally different from Superior Mesenteric Artery Syndrome. Weird, huh? So either the info on the links I found are wrong, or your doctor is. Or maybe both are wrong? I dunno, it's way beyond my scope of knowledge. Sorry I'm not more helpful.

Any possibility that this could be Lyme-disease related? (Just a shot in the dark, but you never know...)

Oh my goodness Fiddle-Faddle, what an interesting suggestion! I actually have a co-infection of lyme! Gosh I never even thought to make that connection. Did you happen to read that somewhere?


I'm glad that you're finding info dagreen And I know how you feel on the restriction to 10 or 11 foods Same thing EVERYDAY, right? It's not very exciting. Do you mind if I ask what happens when you eat something that doesn't agree with you? I feel like at first, it gets stuck in my upper stomach, but then a few hours later (about 5 hours) once it gets to my lower digestive system, I start having intestinal spasms. Hopefully you don't experience any of that! I was diagnosed about a year ago, and my doctor was NO help so I actually switched doctors and have found a doctor that believes in the more homeopathic route to treatments. Has your doctor been much help to you? Does he have any theories? I was diagnosed through a barium xray. not fun! haha. But I'm feeling okay. I have my good days and bad days, all seeming to be food-related. Thanks for asking. How have you been doing?

[shazam]

I have been diagnosed with Nutcracker Syndrome -- but my doctor has never come across anyone with this condition and I have contacted numerous medical institutions around the country and really its quite rare -- and they aren't even sure how to treat it. My doctor has never referred to it as Superior Mesenteric Artery Syndrome and from what I have been reading online -- I don't have those symptoms either. My sympotms are VERY different. I don't have Celiac Disease (as far as I know I can tollerate most any food). I am definitely not small or anorexic either. So I am curious how you came to be diagnosed with NC.....

[catmcdon]

My son just got diagnosed with the Superior Mesenteric Artery Syndrome this morning by barium x-ray. They want to place the tube down past his obstruction and I wondered what your thoughts are on this? He also has cerebral palsy so this complicates everything. In the hospital he has pulled out 4 of these tubes. Any advice on handling the treatment of this syndrome would be greatly appreciated. Thanks!

[angela31605]

i was diagnosed with SMA back in 1996 at 12 yrs old. I battled for over a year before i had my 1st surgery in january of 1997. i became normal after that until spet 1997 when i had to go back because i relapsed. i still feel the pain today when i eat ( the dr left the kinked part and just joined another section together ). i eat whatever i want but i know it's gonna hurt afterwards..especially if i eat a big meal. i only came across this because i did a search on google and it was there. i have never talked to anyone with sma before and when i say i have it people always tend to look at me funny. up until 1996 i was a healthy average child. i am very interestied in talking to u all and hearing how u cope with this. if u ever want to email me my email is lilmissmama31605@yahoo.com
thanks
angela

[loraleena]

Could someone explain what this is and what the symptoms are??

[tom]

loraleena, on Jul 12 2007, 08:59 AM, said:

Could someone explain what this is and what the symptoms are??

Ya no kiddin' loraleena!!

I half-expected to find a name for something I used to have.

Ok fine, I can go google it myself . . . . . .ever so slowly . . . . . .on the sidekick I use for all surfing . . . . . .

But I must admit - if it ain't Christmas, there's more than a *little* wincing for us guys at any talk about nutcracker!

Bomp-bomp bombadomp bomp Bomp Bahhh

[Doug_in_London]

i've just been talking to the Dr today about SMA. Apparently I might have it, this is what I know: I have been having cramps & vomiting every 8-10weeks for about a year. There is no exact test for SMA, it is a diagnosis by deduction. I have had ultra sounds, endoscopy and x-rays which are normal. (My white count is high which is unusal for SMA but it still may be this?!) The Barium drink showed a possible block - SMA syndrome is where the duodenum crosses the SMA and causes a blockage - it's a mechanical malfunction. A CT scan is next which will follow the route of the blood using a dye - something like that.

They like to be sure that it is SMA syndrome by ruling out all other possibilities as the treatment for it is surgery and although it's routine 'surgical plumbing' all surgery carries risks.

It usual occurs in lean people, or tallish with 'not much fat'. It is rare and although they may see quite a few possible cases, they only diagnose it once or twice a year.

I've been told emedicine . com is a good site to look at and I'm signing up now to have a read.

Not sure if this has anything to do with Nutcracker, but hope it helps the SMA question.

Best of luck to all.

[BrookeNichole]

July 26th 2007

Hey!

I have celiac disease and just got diagnosed with SMAS. Did you get surgery to fix it? Are you better? I just went to UCLA for a second opinion (my doctor who made the diagnosis asked me to) and the Dr at UCLA said I didn't have it. Now I'm trying to figure out what to do. My symptoms have been horrible pain after I eat, nausea (could throw up but I hold it down, hate to throw up) and I can't sleep on my right side. I'm interested to here what symptoms you have...also what test they did to find it? I had a CT that showed it and I swallowed a camera capsule that showed food sitting in my stomach for over 18 hours. Please e-mail me when you have time Brooke@CCCRINC.com thanks!

[inahaze3]

Hi..I have been diagnosed with SMAS 4 months ago and my symptoms aren't getting any better...I'm not myself anymore and I fell bad being a burden to my family a friends when I have an episode and can't do anything..my uncle who is a doctor wants me to go to another doc. and see what he says...I want to pin point my problem but those 4 months of test and operations were to much I'm still in school and can't lay down everytime this happens and can't miss to much school either... soso if anyone has any suggestions,ideas, comments..i was told not many people have SMAS and I need someone to relate to...
Thanks for reading from
~inahaze3~

[Dubwa]

HI Danielle,

My name is Katie. I wanted to share what I know about SMAS. Here is a website that might be able to help. It have me a lot of info that was easy to understand, hard find in medical terms. www.everything2.com

My story about SMAS. When I was younger, in junior high to highschool, age 12-18, I saw my family doctor and I told him my symptoms. When I ate and sometimes randomly, severe abdominal pain, nausea, vomiting on the occasion, loss of appetite. Some people also experience burping and small bowel obstruction. Doc told me I had irritable bowl syndrome. I took it for what it was and went on with my life. I struggled through the pain and tried to eat small meals more frequently. I would find myself trying to eat potato chips and rice crispy treats, anything small with a lot of calories. The less I ate the less it hurt. I have been the same size since the 6th grade, 5'1" and 95-105lbs. I wasn't anorexic by any means, it had been my build all my life. I love food, just wish it didn't hurt so bad to eat it. On 8/29/07 I was throwing up from 1am to 10am and decided it was time to go to the hospital. They didn't know what was wrong for 8 days. For those 8 days I was only on saline, IV fluids and lost 25lbs, down to 80lbs. The hospital called in doctors from outside the hospital to help consult on my case. They did ultra sounds, x-rays, MRI's, CT scans, when finally they found my duodenum fully blocked. On 9/10/07 I went through a surgery, an attempt for a temporary fix. They placed two tubes into my abdomin. One in my stomach to drain all the bile and digestive juices, so my stomach doesn't eat itself away, and to help me stop vomiting. The second tube was placed into my large intestine, bypassing the blocked duodenum, to provide me with some nutrients. I have a pump that 24/7 pumps baby-like Ensure food into my large intestine. I've had to change the type of canned baby-like food twice. The first can food my body wouldn't take, I was still throwing up with diahria. The second tube feeding food was more successful. If I gain enough weight back the doctor is hoping the pinch between the duodenum, SMA and the aorta is relieved and I can eat orally again. If it doesn't open back up, then I will have a surgery Duodenojejunostomy. Cut the stomach and intestine, sew them together and bypass the artery obstructing it. Honestly this has been the most difficult time in my life. Anyone that has to deal with this, my sympathies go out to you. <3