Having An Endo/colono Any Tips?

[Dejibo]

I have been diagnosed as MS a few years back. A wonderful friend who frequents this board (no names ***stares at Julie***) swears that she thinks I have celiac. Lately my tummy has been torn up! wooo! The MD thinks I may have a volvulous, but thats another story. I am trying hard to avoid having 4 feet of my intestine removed, and saw the GI MD who suggested an endo/colono type test. I asked if he could do a Celiac biopsy while he was in there, and he agreed that its not a problem.

My question is....

1. should I suggest a special lab to send the sample to?

2. is there any advice or instructions I should pass on to him?

3. what is YOUR advice to ME?

4. please take my thanks in advance.

[Roda]

I have been diagnosed as MS a few years back. A wonderful friend who frequents this board (no names ***stares at Julie***) swears that she thinks I have celiac. Lately my tummy has been torn up! wooo! The MD thinks I may have a volvulous, but thats another story. I am trying hard to avoid having 4 feet of my intestine removed, and saw the GI MD who suggested an endo/colono type test. I asked if he could do a Celiac biopsy while he was in there, and he agreed that its not a problem.

My question is....

1. should I suggest a special lab to send the sample to?

2. is there any advice or instructions I should pass on to him?

3. what is YOUR advice to ME?

4. please take my thanks in advance.

Here are a few suggesions for you:

1. You could ask if the pathologists are experienced enought to diagnose celiac from the biopsy samples.

2. Make sure the doctor takes at least six samples from different areas in the small bowel.

3. As far as the test goes it is pretty easy. I had my egd first and a couple of months later a colonoscopy. The egd was easy.. in and out. The colonoscopy was not that bad either, but the prep was the worst. I had to drink a whole gallon of this stuff called golytely. Nice play on words huh? The main thing is to stay hydrated up until the time that you need not to eat or drink. As for the prep your tushy will get very raw and sore from "going so much". I was determined not to have that happen so I kept liquid antacid on the area. It helps neutrilize the acid. It worked on my youngest the ped recommended it since his skin was broke down from the acid in his loose stool. I saw first hand how it healed his bottom so I decided to use it as a preventative. No sore bottom for me!

[ravenwoodglass]

My advice to you is to start the diet as soon as the endo is done. I would call the office and make sure that they ordered a celiac panel for you and if they didn't request one. It won't do any harm to give the diet a shot after all the testing is over and you don't need to wait on the results.

[Dejibo]

Thanks for the advice. I didnt know they needed to take multiple samples. I have been assured that they have a cutting edge lab at this place I am going, and are well skilled, and have dx celiac in several patients in this lab.

I have had these tests before, so I know its not going to be pretty the day before. They give you dulcolax tabs in the AM the day before, and then have you drink Miralax thru the day. 14 doses. no more nasty liquids called golytely or fleets stuff. they found the fleets stuff had given out some kidney damage to several, and have stopped using it. I do have some diaper rash cream because last time, my fanny was scorched. I dont want to repeat that. I am a tough gal to knock down, so they have an anesthesia guy at my table for the ride. They promised to put me out, and keep me out. I have been known to need double the dose of meds, and still wake up in the middle. The endo is just alot of gagging, but its over pretty quickly. Even with the numbing spray, I still gag.

I appreciate that so many have started the diet, and felt better. I was given a gluten free diet years ago while on chemo, and it really made no change in my life. I am going to be extremely surprised if my biopsy comes out positive, but have sworn to be tested to put my friend at ease. Heck, they are going to be in there anyway. why not take the sample! She thinks my MS may actually be a celiac issue, and I am willing to listen and take the test. All my MDs swear its MS. All the special folks, including the gastro, surgeon, oncologist, and neuros swear its MS. Its proably secondary to the large amounts of chemo I required years ago to survive cancer.

Since I do and always have had tummy issues (at least since I was 25) I am willing to listen. I am told by the surgeon I have a volvulous. A corner of my intestine keeps folding over on itself, and that puts a kink in the hose, causing pain, swelling, bloating, and has been happening for so many years, it has caused that peice of my intestine to become non functional. The colon/endo is going to check to see how viable or survivable that tissue is. The surgeon has become convinced that simply removing that peice of non functional intestine will fix the issue. I am not so quick to cut.

btw, I am on a good diet. I eat organic, and whole. We eat from the ground, and buy meats locally. I dont eat anything from a box, or bag, and run from MSG and HFCS. I havent seen a mcdonalds or BK in years and years. If I want mac and chesse, I make it myself, I dont dump it from a box. If I turn the corner and the samples are positive, I will cross that bridge when I get to it, but dont want to give up breads, and be so restrictive on my diet unless there is a need to. IF it comes out positive, I will call my friend, and she will come strip my house of all of its yummy gluten. I dont eat much gluten now, but she would go nuts and strip my place to the bone. I bet she will move in for a week and show me recipes, and dishes. I love that kid! she rocks! so, IF the biopsy comes out positve i am in good hands, but if not, I really dont want to be in another club house. I have enough restrictions on me.

[ravenwoodglass]

How was your MS diagnosed? Did they do an MRI and a spinal tap? Celiac can cause brain lesions that are very similar to the lesions found with MS, they are often not in exactly the places where MS lesions would be though. I was thought to have MS for quite a while. Lesions were found in my MRI and many doctors would have simply diagnosed MS then based on my symptoms and the lesions. My neuro chose to do a spinal to confirm and my fluid didn't have the 'debris' that is found with demylinating lesions though so they rescinded the MS diagnosis. He was still clueless about the celiac issue though and I continued to decline for a few more years until I was finally diagnosed celiac. It wasn't until a couple of years after that I found the correlation between the lesions and celiac and found they were diagnostic of celiac that had attacked the brain. My MS type symptoms took awhile to resolve but resolve they did.

Do give the diet a good strict try after your testing is done. False negatives are all too common especially when the brain is what is being effected the most. You can start the diet the day they do the endo. Don't wait for the results.

[Dejibo]

How was I dx with ms?

Spinal tap showed Obands.

MRI reveals typical pattern of periventricular lesions in the perifrontal cortex.

positive babinsky reflex

After trial of interferons decrease in lesion load.

Hx of numerous flares that involve drop foot, and other typical MS reflex responses.

positive response on copaxone.

Diagnosed by a local MD following up sx, who sent me to a local nuero. Local neuro felt it to be a definitive case of MS, but I wanted to debate it, so i sought out a higher level MS center and has all tests repeated. B12 normal. Vitd a lil low. negative lyme, negative ANA, negative lupus. I have been poked, prodded, examined, scanned, imaged, and turned on my head. it took a great deal of effort for them to prove to me that it was MS, and not something else. Followed up by a 2nd high level MS center to begin anew. All tests were reconfirmed, and I found that I had to face the fact that it was indeed MS. Obands in spinal fluid show a definitive pattern of mylin destruction classic to MS.

I am a HUGE believer in "you are what you eat" I have been on a gluten free diet for a year period in the past without relief from my sx. I went back to a diet of non packaged foods. I eat as much from the natural sources as possible. I buy local or grow my own produce. I dont eat from boxes or cans. I avoid MSG, and high fructose corn syrup.

My friend who has celiac is a bit...hmm...aggressive thinking that I have been misdiagnosed. Even tho I have been seen by the best of the best, and since I am having an endo, I promised that I would add the whole celiac panel to the event. She is a pro at gluten free, and is quite strict about it. so, I guess I am not willing to cross that bridge unless I have to.

[ravenwoodglass]

How was I dx with ms?

Spinal tap showed Obands.

MRI reveals typical pattern of periventricular lesions in the perifrontal cortex.

positive babinsky reflex

After trial of interferons decrease in lesion load.

Hx of numerous flares that involve drop foot, and other typical MS reflex responses.

positive response on copaxone.

Diagnosed by a local MD following up sx, who sent me to a local nuero. Local neuro felt it to be a definitive case of MS, but I wanted to debate it, so i sought out a higher level MS center and has all tests repeated. B12 normal. Vitd a lil low. negative lyme, negative ANA, negative lupus. I have been poked, prodded, examined, scanned, imaged, and turned on my head. it took a great deal of effort for them to prove to me that it was MS, and not something else. Followed up by a 2nd high level MS center to begin anew. All tests were reconfirmed, and I found that I had to face the fact that it was indeed MS. Obands in spinal fluid show a definitive pattern of mylin destruction classic to MS.

I am a HUGE believer in "you are what you eat" I have been on a gluten free diet for a year period in the past without relief from my sx. I went back to a diet of non packaged foods. I eat as much from the natural sources as possible. I buy local or grow my own produce. I dont eat from boxes or cans. I avoid MSG, and high fructose corn syrup.

My friend who has celiac is a bit...hmm...aggressive thinking that I have been misdiagnosed. Even tho I have been seen by the best of the best, and since I am having an endo, I promised that I would add the whole celiac panel to the event. She is a pro at gluten free, and is quite strict about it. so, I guess I am not willing to cross that bridge unless I have to.

I don't think you have been misdiagnosed. Your diagnosis for MS is conclusive with the bands they found with the spinal. I hope you didn't have a headache like I got when you got yours. The lack of those bands were the reason they decided I didn't have MS after all but they still didn't know it was celiac until Years later after my symptoms almost totally resoved. It was then I started researching celiac and neurological problems and discovered what my UBO's really were.

You could of course have both MS and celiac. I think your freind is a very caring person who is trying to help the best she can. It sounds like you take very good care of yourself and I do think you are doing the right thing to have the testing done.

After testing a trial of the diet to see if it brings your stomach issues under control might be a good idea. Celiac can appear at any time and is usually triggered by a stressor either physical or emotional.

[Dejibo]

I am quite willing to entertain the fact that I MAY have a celiac issue. I know that many diseases are diagnosed without clear proof of what is going on. I am also aware of how much money is being made off of my illness. From medical check ups to meds that cost 40k per year. Check ups that run $1k a visit and $5k every 6 months to get MRI scans. I have demanded to drop them to ONCE per year, and NO MORE! It ridiculous how much money is being spent on me.

The reason for the endo/colon thing is that for years now I have had a right upper quadrant pain that can be quite painful. I have had them go in to "look" at my gallbladder. They found it HEALTHY! and ...yep, you guessed it, removed it anyway! I was ticked off! To remove a healthy organ in hopes of relieving the issue was NOT a good enough answer for me. I have chased this issue for years. it will show its ugly head and be horrible for months, and then...just quietly go away. A few months or sometimes years later it will come back. The surgeon tells me I have a "cecal Bastule" or a volvulous. that a corner of my intestine keeps folding over, that its no longer attached to the wall of my abdomen. In years past they used to just go tack it back up, but 99% of the time it fails, becomes infected, and dies. Now they just go take that whole corner of 3 to 4 feet. Since I have had so many surgeries in the past after breast cancer to remove my ovaries, and lost my uterus in childbirth, he feels a key hole surgery isnt possible, and wants a big girl incision. What he is saying makes sense, and it certainly fits my sx and my history. I am being extra cautious. I have asked the GI guy to go take a look, and lets see how viable that tissue appears to be in that corner. While they are in there anyway, I figured I would ask for the celiac biopsies that my friend has so often told me I need.

it was my hopes to come here, and get advice on what to tell the MD/GI to help make the sampling more effective or make sure its handled correctly. Lyme disease tests are a frequent false negative, and most labs cant handle it properly, so I assume Celiac testing may be the same. its my hopes to get some advice to give my surgeon. I have long since faced the fact that I do indeed have MS. I really, really, really dont want to be more restrictive of my diet unless I need to be. I am pretty close to the "makers diet" now. I have taken great care of my temple, and worked hard to give it good healthy fuels to run off of.

Thank you for all the public, and private advice. You guys rock!