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Superior Mesenteric Artery Syndrome- Anyone Heard Of This (a.k.a. The Nutcracker Syndrome)
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43 posts in this topic

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

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

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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.

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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?

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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...)

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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?

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?

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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.....

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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!

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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

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

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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! :o:lol:

Bomp-bomp bombadomp bomp Bomp Bahhh

:lol::huh:

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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.

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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!

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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~

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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

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I joined this site because I have several friends that have to eat gluten free and I wanted to know more about it, find recipes and answers.

Since your diet has changed, you may have lost some weight. If you are a small framed woman or man, even 5 lbs could be dramatic weight loss for you, causing you to lose the fat pad between the duodenum and large intestine, causing SMAS. If you are a small framed and had lost a lot of weight after going to a gluten free diet, dramatic weight loss of any kind can cause the SMAS. I forgot to post that in my last message.

I hope you are well, and take care.

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Hey I just wanted to add to Katies comment. I to have the same problem, i had a lot of smae symptoms...they pain i would get after eatting was unreal..it hurt so much that i grew to dislike food bc i knew it would make me sick or have the worse pain ever...doctors would ask me if its all in my head..or making it up for attention which would get me soso mad b/c i was in so much pain and finaly i was told i had SMAS but it just recently changed to IBS. I was getting better then all the sudden it came back worse then usually i have already lost 4 pounds in about a month and i wake up and I hungry but everytime I go eat just fell sick but i know i need to soso i usually eat fatting foods of drink Ensure which is a weight medicine. It got soso bad one day that my pain would not go away for hrs i was shaking, sweating, and blackingout until my friends took me to the ER and they didn't know what to do they never even heard of SMAS soso they tired calling my doctor i needed up getting x-rays and going home and it finally stop later on....i'm not myself when it is back like this does anyone have any advice?? comment back!

<Thanks

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Hello :) I was diagnosed with SMA in early January and wanted to reply to your post although it was from months ago. I just wanted to share that I was advised to avoid food products including fiber and it has seemed to help.

My heart goes out to all of you that suffer from this disorder, because I know how frustrating it can be. Feel free to reply with questions, comments or suggestions.

<3 Valerie

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Hi everyone,

Thank you so much for your writing me. I'm sorry I've been off this website for months. I've been in school and trying to figure out what's going wrong. My doctor sent to see an allergist in September and I was thinking that maybe my problems would go away. I was put on a special diet so I wouldn't have any oral allergy syndrome problems, and still the pain didn't go away. I've been keeping track now of my pain for months, and it seems some of it is very related to my period. In response to a few of your questions, no, i do not have lyme disease, so I don't think that's related for me.

Catmcdon- I hope your son is okay, and that the tube down his throat helped.

Anonymousgurl: When asked 'Do you mind if I ask what happens when you eat something that doesn't agree with you?' I have no problem telling you that however my pain isn't consistent. Sometimes I will get pain out of the blue not connected to my period and it almost feels like a hungry feeling, but I've already eaten enough. Sometimes that pain is accompanied by nausea and dry wretching so I don't really feel like eating, so I take a rapid release tylenol 500 mg and that eases some of the pain. Also, sorry if this grosses anyone out, but it might help, I use suppositories sometimes which eases the nausea. I have a bowel movement every day, but sometimes one suppository I think moves something in my intestine which helps the pain go away. The answer isn't always that easy. Sometimes the pain lasts for hours at a time. Its not consistent though. I have pain sometimes every 10 days, sometimes a few days in a row, but I do have to admit sometimes the worst pain is with my period so I am getting that checked out. I don't want to continually use suppositories since I don't want my bowels to rely on them, however, I am a university student and sometimes that's the only choice I have.

In response to what someone else says I belch quite a bit when i think something is stuck or blocked, and then i get nausea and it almost feels like something is pushing up from my insides, which is why the suppository helps sometime. Also, a few times I have had food come up that i've already digested into my mouth, and it tastes really gross.

Inahaze3- I'm so sorry for all you have suffered. I don't think I have nearly the same problems as you do, so I don't know that my writing will help that much. However, you shouldn't be having high fat diet because I saw a dietician at the hospital and low fat diets are key.

From what I've learned, I saw a dietician who does believe in SMA a few weeks ago and I've learned LOW FAT DIETS ARE KEY. SMALLER MEALS ARE BETTER. The dietician told me do not go more than 4 hours without food. So 'Inahaze3' you might want to try that instead of having really fatty foods, have small, more frequent meals, because it will just cause you more pain. This is all I know right now. I'm not sure how much of my pain is related to my period or related to SMA. I think low fibre is better, because a lot of fibre I think causes more problems, I'm not sure though.

I took the bloodtest again for celiac, and my levels are in the normal range, so I am not getting gluten in my diet and have been gluten free for over a year and a half. The allergist told me I have no allergies at all, except that certain foods if you look up ORAL ALLERGY SYNDROME have a cross contamination type thing going on, so when I eat certain foods, it's like i'm eating dust or trees, etc., which i'm allergic to and is separate from celiac. So since I'm not allergic to any foods from the testing, I assume having allergies to foods isn't related to my pain. However, I have found for some reason, maybe it's related to SMA that rice and corn seem to cause me problems. I've also switched to 1% milk, instead of 2% milk and the dietician told me I should not have more than 40g of fat a day.

Guidelines she gave me on a low fat diet:

Avoid fried and fatty foods

Smaller more frequent meals

Remove all skin and visible fat from poultry, meat and fish prior to cooking

Commercial 'fat- reduced' and 'fat-free' products may be suitable for you, but the fat content should be checked

Low fat foods she gave me:

Eggs (1 a day, egg whites as desired)

Dried peas, beans, lentils

All fruits and juices EXCEPT avocado, coconut, olives, vegetables that have been fried or prepared with added fat (e.g. french fries are a BIG NO)

Total of 3 tsp (15 ml) a day of butter, margarine, mayonnaise, peanut butter, salad dressing or oil

Limit to 6 oz (150g) a day of lean meat, fish, or poultry that is baked, broiled, roasted, boiled, stewed, microwaved, or steamed.

Cheese (7% MF or less)

Yogurt (1% MF or less)

Clear broth, bouillon, consomme, and commercial soups EXCEPT commercial or chunky soups or high-fat homemade soup made with whole milk, cream, and/or other added fats

Herbs and spices, pickles, popcorn (with no added fat). Do NOT EAT the type in movie theatres

Sherbet, water ices, skim milk, ice cream, puddings made with skim or 1% milk, angel cake, meringues

Foods to AVOID:

AVOID ALCOHOL, CASSEROLES, CREAMED, SAUTEED, FRIED, PAN-FRIED, THAT HAVE CREAM OR BUTTER SAUCE OR GRAVIES. AVOID FRENCH FRIES, ONION RINGS, MILKSHAKES, FRUIT PIES

Anyway, this is the list I was given. Of course check to make sure everything is gluten free. Again, I apologize for taking so long to respond. Thank you so much for everyone responding. I don't have the ideal solution, since I'm still in pain, but eating smaller meals I think is helping a little, not much, but anything helps. I hope this information helps everyone.

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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

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I was diagnosed with SMA syndrome a few months ago. I had a barium swallow follow through and it was diagnosed. I was having severe pain to right side of my abdomen and vomiting. My doctor was not familiar with this and had to look it up. First I had IV fluids through a PICC line and I had fluid overload and got worse, then they placed a tube down my nose to put nutrients through but the tube was not placed correctly and it made things worse, then I was put on the medication Amitiza which may have helped for a while, but every month or so i have a relapse. First I get sore gums, that is how I know it is coming on,

then I get this feeling like I swallowed a watermelon and it is stuck just below my ribcage on the right side, which during this time i can't eat because it hurts too much. I am told that not eating makes it worse, as far as curing the problem, the smaller you get the worse it gets, but the worse it gets the smaller you get!

I am not anorexic or bulemic, just naturally small framed. I would be very interested if anybody else gets the sore gums, that is almost as misreable as the abdominal pain. There is surely not enough information out there on the subject, most doctors have heard of it but no one seems to be well educated in the subject that I have found. i have 2 brothers and one brother in law that are doctors and i am a registered nurse and between all of us, not much expertise has been found on this disease. If anyone has any help or advise or any same symptoms, please reply. my e mail is renaanne@myway.com

Thanks!

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Hey everybody, sorry for bumping such an old topic...

but honestly this is the only site I've found where people actually KNOW what Nutcracker Syndrome is.

a month short of a year ago I was diagnosed with Nutcracker Syndrome while attempting to join the USAF. I was put into medical hold after 3 weeks of training for stress fractures and a labral tear in my right hip. I received an X-Ray and an MRI for that condition, and the results from the MRI made the doctors at Wilford Hall on Lackland AFB want to do more tests. So, I went in for a C/T Scan, and a day later got a call from an Interventional Radiologist, telling me I needed to come in ASAP and to bring a Wingman with me. They then diagnosed me with NS and promptly disqualified me from being able to join the service. denying me any kind of medical care or benefits.

so, the doctors considered me asymptomatic. The only somewhat telltale signs that I have are, of course, visible via my C/T scan results, but also if I stand up at any speed other than very slow, I get really lightheaded, and I have Vericoceles on my left testicle.

I'm very tall, and really light for my height. (6'5 and between 160 and 170 lbs). after having read some of the responses in this thread it seems to be a recurring theme here. I'm not anorexic or bulemic or have any other sort of ED that I can think of, as far as I know my eating habits are normal, if not slightly above average. though it IS impossible for me to gain weight.

I really don't know what to do about it, since I don't have any kind of Medical Insurance, but I was wondering what my options are about getting this treated. I've read over the same web sites hundreds of times and found that they can either put a stent in my renal vein, opening it up and relieving the pressure, or they can do surgery and bypass the blockage.

To be honest I'd like to avoid surgery, and I was told that the stent was inserted via the Femoral Artery. an "in and out procedure" as the Radiologist described it. does anybody know how much this procedure would cost, and if there's any doctors in the Missouri/Kansas area that are qualified to do this?

please PM me or e-mail me, some support would be great, and it'd be nice to talk 1 on 1 with someone else who was diagnosed with this seemingly mysterious condition.

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I've never heard of this condition before, but am sorry to hear so many are dealing with it.

This might be just really stupid, but I'm wondering about something... I used to have a friend who became a chiropractor (he got divorced, moved away, and I lost touch with him three decades ago)... anyway, this friend would treat people with a hiatal hernia, which is an unusually large opening in the diaphragm, allowing the stomach to slip through and causing heartburn, reflux, indigestion, etc... he used to treat people by instructing them to weight their stomach down by drinking water or something, and then bounce up and down rapidly on their heels, which would pull the stomach out of the diaphragm and prevent digestive problems... and that they could do this whenever they needed to...

... so I'm wondering, since this seems to be another mechanical problem, pinching the duodenum... and that it seems even gaining someweight might releive this??? I'm wondering if some brilliant chiropractor or medical massage specialist would know of something a person could do on his/her own, similar to the above, to repostion organs enough to take the squeeze off????

Just wondering aloud.

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I actually have a friend who was just diagnosed with this, she's a 14 year old dancer. And we go to our first competition soon, and she's scared she won't be able to eat anything and is actually quite upset. Does anyone know any good recepies for someone with this syndrom, she's a vegetarian aswell. Please help... I want to try and surprise her at competition with some yummy food :)

thanks, good luck to everyone!

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

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From what I've learned, I saw a dietician who does believe in SMA a few weeks ago and I've learned LOW FAT DIETS ARE KEY. SMALLER MEALS ARE BETTER. The dietician told me do not go more than 4 hours without food. So 'Inahaze3' you might want to try that instead of having really fatty foods, have small, more frequent meals, because it will just cause you more pain. This is all I know right now. I'm not sure how much of my pain is related to my period or related to SMA. I think low fibre is better, because a lot of fibre I think causes more problems, I'm not sure though.

I took the bloodtest again for celiac, and my levels are in the normal range, so I am not getting gluten in my diet and have been gluten free for over a year and a half. The allergist told me I have no allergies at all, except that certain foods if you look up ORAL ALLERGY SYNDROME have a cross contamination type thing going on, so when I eat certain foods, it's like i'm eating dust or trees, etc., which i'm allergic to and is separate from celiac. So since I'm not allergic to any foods from the testing, I assume having allergies to foods isn't related to my pain. However, I have found for some reason, maybe it's related to SMA that rice and corn seem to cause me problems. I've also switched to 1% milk, instead of 2% milk and the dietician told me I should not have more than 40g of fat a day.

Guidelines she gave me on a low fat diet:

Avoid fried and fatty foods

Smaller more frequent meals

Remove all skin and visible fat from poultry, meat and fish prior to cooking

Commercial 'fat- reduced' and 'fat-free' products may be suitable for you, but the fat content should be checked

Low fat foods she gave me:

Eggs (1 a day, egg whites as desired)

Dried peas, beans, lentils

All fruits and juices EXCEPT avocado, coconut, olives, vegetables that have been fried or prepared with added fat (e.g. french fries are a BIG NO)

Total of 3 tsp (15 ml) a day of butter, margarine, mayonnaise, peanut butter, salad dressing or oil

Limit to 6 oz (150g) a day of lean meat, fish, or poultry that is baked, broiled, roasted, boiled, stewed, microwaved, or steamed.

Cheese (7% MF or less)

Yogurt (1% MF or less)

Clear broth, bouillon, consomme, and commercial soups EXCEPT commercial or chunky soups or high-fat homemade soup made with whole milk, cream, and/or other added fats

Herbs and spices, pickles, popcorn (with no added fat). Do NOT EAT the type in movie theatres

Sherbet, water ices, skim milk, ice cream, puddings made with skim or 1% milk, angel cake, meringues

Foods to AVOID:

AVOID ALCOHOL, CASSEROLES, CREAMED, SAUTEED, FRIED, PAN-FRIED, THAT HAVE CREAM OR BUTTER SAUCE OR GRAVIES. AVOID FRENCH FRIES, ONION RINGS, MILKSHAKES, FRUIT PIES

Dagreen - You are the first person with SMA Syndrome that I have heard from who has described an intolerance to fats/oils as a symptom. I have had SMA Syndrome my entire life, and my doctors do not understand why I get (even more) sick when eating the foods your dietitian has listed as off-limits. I have naturally gravitated toward a low-fat diet exactly like the one you have described as well. Would you mind sharing with me the name of your dietitian? You can post here, or if you'd like to keep it private, email me at ssm2r@virginia.edu. I have met innumerable doctors and nutritionists, and they all refuse to draw a connection between my fat intolerance and my SMA Syndrome.

To all the posters in this forum - I can relate to your struggles. I'm nearly 5'5", and have had SMA Syndrome my entire life. As a result, the most I've ever weighed is in the mid-90s. Just months ago, I was barely above 70 lbs. Now that I've had surgery (open duodenojejunostomy), I've battled my way up to 85~87... though I still have not experienced a single pain-free day since.

To those who are still searching for initial treatment: There are more options now than ever. I had my open surgery just *months* before the London Health Sciences Center in Ontario, Canada came up with a robotic laparascopic alternative for SMA Syndrome that could have spared me much post-operative pain... and permanent nerve damage. But, it may not be too late for you.

Here is the link to my blog in which I write about every step in my lifelong battle with SMA Syndrome: http://www.myotaku.com/users/redviolin/posts/1298112

I am also the initial author (and image-provider) of the Wikipedia article on SMA Syndrome. In that article, I discuss all the surgical and non-surgical options now available for our condition.

I hope you all find some helpful information and answers about SMA Syndrome in my blog and Wikipedia entry. It is true that SMA Syndrome is so rare that many in the medical community do not acknowledge its existence. The Chief of the Gastroenterology Department at Georgetown University Hospital could hardly believe his eyes when he met me. A conference was called throughout the entire GI and surgical departments in the hospital to discuss my radiology.

But, trust me, there *are* doctors out there who will listen to you and give you the treatment you all deserve.

May God bless you all.

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