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#464900 - 03/15/12 04:41 AM Advice please
Winter Offline

Registered: 12/01/10
Posts: 456
I saw my new Gastro doc yesterday. He is wanting to do a colonoscopy and endoscopy. I am having burps after I eat and drink, have not been able to gain weight since having AS and mentioned to him since going gluten free, I feel a little better. He said if I have a true gluten problem, I will see much more improvement in another 6 months so he recommended staying wheat free. Next time, I will ask him his thoughts on starch.

I am nervous about the procedures and my husband is telling me I am wasting our time and money frown. We got into an argument about this last night and he is pretty much not on board right now.

Advice needed - please!
Meds -Hizentra, leflunomide, Prednisone

#464908 - 03/15/12 09:57 AM Re: Advice please [Re: Winter]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6114
Loc: Reno or SFLU Philippines
Hi, Shari:

If going out-of-pocket for the procedures, I would not have them done unless the changes have been sudden or dramatic. The GI docs seldom find anything significant (to them), and cannot usually recognize even simple and obvious inflammation.

Certainly, physicians have their place, but too often they do unnecessary procedures: Recreational medicine.

Short of getting sepsis from some type of gastrointestinal defect and discovering this, the reward for doing the GI workup is all positive for the doctor doing it and a negative for You.

It sounds like You have dysbiosis as a minimum and potentially a gastric ulcer. It is cheaper to treat these things than to evaluate for them and treating them even if You do not have them has less risk than the procedures for evaluation.

We are each placed at the hands of our doctors and too often doing this type of thing more to please them than to help ourselves. A study was conducted many years ago, with patients sent to specialists. Every single physician felt his specialty applied best to resolve a given patient's problems. If You went to a surgeon, perhaps they would not surprisingly recommend surgery!

I would not pester such a person about starch; most physicians are not yet affiliated with the current research and a greater subset just don't care. It is too far off their field of interest and too strange for them to support.

If interested, I would contact the Road Back Foundation and find someone in Your area willing to treat gastritis, dysbiosis, and AS. It would be less expensive and many times more effective (I believe).

And perhaps You have been off NSAIDs long enough, but they caused my ulcers and myriad other problems down 'the line.'

It is important, however, to get first-hand medical opinions from competent physicians, maybe who do not have a dog in the hunt...

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#464911 - 03/15/12 11:02 AM Re: Advice please [Re: Winter]
cemc Offline

Registered: 01/25/10
Posts: 2105
Loc: UK
Did you ask why your GI doc wants to do those procedures, and whether that would make a significant difference to how he would treat you? I could see an endocsopy being useful to check for ulceration if you have NSAID damage, etc, and to figure out why you have burps, but unless you have more general and lower abdominal pain it does sound like a colonoscopy might be unnecessary right now.

If you do have a true gluten problem, then just remember that you will only get limited benefit from being wheat free - you would need to go totally gluten free to make a real difference and that means taking out all traces of wheat, barley, rye and anything derived from them. It takes a lot more dedication, reading labels, and research to go gluten free. If you only go wheat free and you really are gluten intolerant, then the benefits of the diet almost certainly won't last long and you will revert back again. It only takes trace amounts of gluten regularly to negate the benefits of a gluten free diet. I'm not sure what its like in the US, but in the UK a proper medical coeliac diagnosis actually opens doors for dietician advice as well as membership of the national coeliac society and their updated food lists and dietary advice.

#464918 - 03/15/12 11:35 AM Re: Advice please [Re: Winter]
avonldy Offline

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
It doesn't sound that your symptoms are enough for doing both procedures. They are not 100 % safe. If all you are having trouble with is burping, I would try taking some kinds of stomach protectors before letting the Dr. run those tests. Burping, I think, would simply by an upper GI problem, If you are not having bowel problems or blood with your stool, I wouldn't have the colonoscopy. If you continue to lose weight and burp, why not ask about doing an upper barium study. That is much safer and less expensive then the endoscopy.
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

#464929 - 03/15/12 12:45 PM Re: Advice please [Re: Winter]
Pea Offline

Registered: 02/24/11
Posts: 1968
Loc: Pacific Northwest
:facepalm: Hi Shari,
It sound's like you are confused and your Dr. did not explain why he wanted to do the procedures. My husband has Celiac disease and I will tell you what I know. They do these test to see if it is truly Celiac. It affects the upper part of your G.I. tract. The look to see the villi and how much damage has been done. If it is towards the bad side you might also have lactose intolerance. Having Celiac produces a lot of gas. My mother-in-law has it as well. They can't eat steamed vegetables either without taking Beano which is enzymes to help with the gas.

Betty Hagman has the best cookbooks and in each she has a forward with as many hidden gluten's as she and others have found. Things like soy sauce are distilled in wheat so we have to buy special soy sauce. This is only one example. It will also produce patchy dry skin usually on the arm's and torso.

He is probably wanting to look for ulcers in your stomach or reflux as well. He probably wants to look for certain things and wean out certain things for a better treatment plan. I have a lower g.i. every two years because I grow polyp's. It is not painful at all. The worst part is the prep because you have to drink some gagging stuff and sit on the toilet for a day to get cleaned out. The upper g.i. they put you completely out. I have had those as well. I had some huge ulcers from N.S.A.I.D.s. One was so big that my stomach folded over to protect itself. Reflux to can make you burp a lot. You didn't say if you were in a lot of pain with any of this or what you had been taking which is okay. Let me know if you need some more info. I have ton's of it.
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013

#464949 - 03/15/12 04:25 PM Re: Advice please [Re: Winter]
Sue22 Offline

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
if it were me / when it was me, i would have / did have both an upper endoscopy and colonoscopy done. i'm very glad i had both done when i did.

i only had the upper endoscopy done twice: 1993 and 2006, both times my gastritis was flared terribly, terrible pain from it. the doctor wanted to make sure it wasn't an ulcer, as one can die from a bleeding ulcer with very little pain associated. i've always been lucky that even "just inflammation" will cause me severe pain, thus probably causing us to intervene before an ulcer can form.

my aunt died from a bleeding ulcer when she was around 40. my great grandfather died from stomach cancer from years of stomach inflammation. i'm lucky that today there are drugs to quiet the inflammation otherwise i may have followed in their footsteps. so, my opinion, get the upper endoscopy to know whether or not you have an ulcer. in my opinion, it gave me great peace of mind to know it was "just inflammation", while painful, not life threatening like an ulcer.

also, as was stated above, they can check for true celiac by checking the top of the small intestine when they do the upper endoscopy. my GI doc did that in 2006. he also followed it up with blood work: antibody and gene tests (HLA-Dx genes):

all three tests came back negative for me. i was told if all three were negative, it was 99.x % certain i didn't have celiac. the blood work is very simple. and all of my blood work is free to me, covered 100% by insurance.

and if yours comes back positive, as was said above, you'll have to eliminate more than wheat, as gluten is in a number of grains. lots of gluten free products these days. and if starch free, then gluten free by default.

as for a colonscopy? once we hit a certain age, we are supposed to get them done every so many years to check for polyps, cancer, etc. if he is to do a colonoscopy, have him do it all the way to the ileum, as that is the most common place of inflammation for spondyloarthropathies from what i've read. i was glad to have the colonoscopies done: 1993 and 2010. they found a few polyps to remove before they became cancerous. and the inflammation and small crohn's like ulcers in the ileum was one of the big pieces of data that helped me get my dx of undiff spondy.

if they want to exam the weight loss. they should have you do a stool sample test where they test the stools for fat, to see if you are not absorbing your food properly. i get like that where i don't digest my food, ending up with loose bowels and undigested food in them. and when it happens i loose weight, as i'm just not digesting and absorbing at that time. that simple stool sample test can tell you a lot. totally noninvasive, if a bit gross.

at the least, i'd get the upper endoscopy. peace of mind can go a long way, for me at least; and the blood work and stool testing.

though if it were me, i'd get both endoscopies, they really can see a lot that way. a lot more than they can see other ways. i've had the upper and lower GI barium tests, and they never showed what the endoscopies could. those tests are i think only good for large problems, will show blockage from crohn's but not the kind of inflammation and small crohn's like ulcers like i had.

good luck. do what you think best. hugss

Edited by Sue22 (03/15/12 04:27 PM)


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#464983 - 03/16/12 05:56 AM Re: Advice please [Re: Sue22]
Winter Offline

Registered: 12/01/10
Posts: 456
Thank you guys for all the good advice . I'm still taking it all in.

Still figuring out what to do. I am going to call today to ask to get my stool tested. I'm a little suspicious of H.pylori in my gut. I have been on a lot of antibiotics since September for sinus issues and wonder if there is a connection of stomach cramping on and off, foul smelling stools and loose stools with H. Pylori. And right now, I'm severely inflammed in my right SI only. I'm on a steroid pack currently, which is helping but when the steroid wears off before the next pill, the pain is back. I think I have a yeast problem again now too due to the steroid frown.

My stomach is a little better on the steroid- no more hiccups, burps are lessened but still there on occassion with intake of food and water and I am having a ton of bowel movements on the steroid. Is this good or bad?

I would like to know if I am a true Celiac. Suspicious about it since going gluten free, I don't have the brain fog, I'm sleeping better, fibromyalgia has greatly improved but I have been bloated since going gluten free so I hope I am on the right track. I'm still experimenting with low/no starch now.

When I saw the GI guy, I had so many questions, I didn't even get to tell him about all the antibiotics I have taken. At first, he said just endoscopy due to my burping and long-term NSAIDs and then I started to explain the stomach cramping, change in bowel movements, weight issues and he said "let's check it all out". He did mention there are specific stomach meds for inflammation that would help bring down my pain in the hips and SI joints but he said, you can only get them prescribed if they find inflammation in your stomach. I said "why can't I just try them to see if it helps me" and he said insurance won't cover unless they get an actual diagnosis frown. Anyone know what meds he is talking about?

So that is my history in more detail. Thank you guys for all the support!

Meds -Hizentra, leflunomide, Prednisone

#464986 - 03/16/12 06:41 AM Re: Advice please [Re: Winter]
ValsMum Offline

Registered: 07/05/10
Posts: 1185
Hi Winter,

I was taking antibiotics(minocycline) to try and help my RA and for me they increased my inflammation like crazy. It seemed like they did alot of arthritics good but my body flares up when I use them. I still believe that some people can use them for arthritis and they are much safer than all the traditional toxic RA/ AS meds, but they do not like me. I tried for a year or more. The gluten free diet will help and try cutting out sugar and dairy and see if that helps, it helps me. Hope you feel better.

I would like to know what meds he is referring to as well, let us know if you find out.
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise

#464990 - 03/16/12 08:29 AM Re: Advice please [Re: Winter]
cemc Offline

Registered: 01/25/10
Posts: 2105
Loc: UK
I suspect the GI was talking about biologics (anti-tnfs), that you can only get with a confirmed diagnosis of either spondy or inflammatory bowel disease (crohns or Ulcerative colitis).

#464996 - 03/16/12 10:40 AM Re: Advice please [Re: Winter]
Dotyisle Offline

Registered: 03/07/02
Posts: 9494
Loc: Rosario, Argentina
Hey there,

Bloating could be result of bacterial imbalance and what you are eating. Do you notice all the time, or only after eating certain foods. Do you drink soda... that bloats me all the time now.

Take care,

AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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