Feeling Lousy And Frustrated

[Roda]

I've been having some GI issues since Jan. Heartburn, bloating, belching, epigastric pain and diarrhea. I had a gallbladder ultrasound and Hida scan because I thought my gallbladder was giving me trouble. Had normal ultrasound and "technically" normal hida. Threshold for surgical intervention is an ejection fraction of 35% and mine was at 48%, not optimal(according to report) but "normal". I gave in and had an EGD on April 6th. I was diagnosed with distal esophagatis and a stomach ulcer. Small bowel biopsy was normal with NO villi blunting and biopsy negative for h pylori, so at least some good news. I have been taking prescription zantac since then with relief in the stomach pain and heartburn. My symptoms of bloating and diarrhea have gotten worse! I eliminated dairy on the 7th thinking that would make a difference. I feel no better if not worse. When my body has had enought it does a major purging. I had some quacamole last weekend (I made it and it was safe) and hours later I was bloated out like I was 10 months pregnant. I had other stuff to eat that day, so I think the quac was the last thing my body could tolerate. The next morning all h*** broke loose. I'm miserable again tonight with the same thing except now I am hardly able to make it to the bathroom in time. I don't think it is the zantac because I have eaten very bland, mostly just rice, and be somewhat normal. I plan on putting a call into the GI tomorrow. I thought with the diagnosis of the ulcer I would get to feeling better and move on. NOPE! I'm tired of all this and very discouraged. I'm trying to decide if consulting with a surgeon about the gallbaldder is something I should persue. Something is wrong and I still think the gallbladder could be it. Maybe I'm just going nuts, I don't know anymore. I felt bad before the celiac diagnosis, but it was just the heartburn and fatigue from anemia and low vitamin D. I never had a problem with diarrhea, quite the opposite in fact. This constant running to the bathroom and fear of going someplace without a bathroom is taking its toll.

[mushroom]

Roda, did the GI doc have any clues about what could have caused the esophagitis and ulcer? I thought ulcers these days were treated with antibiotics, that they were an infection? Am I wrong on that count? Or is it only h. pylori-caused ulcers? Had you been taking any NSAIDS or anything else that might have irritated your stomach?

Do you have a juicer? I read that fresh cabbage juice can help to heal a stomach ulcer Just a thought. So sorry you are still having such problems after all this time. 'They' are right when they say that life just ain't fair!

[mamaw]

sorry you are feeling so poorly. I pray you find an answer & relief quickly. I have often read where Zantac,pepcid & so on only mask the problem & at times do more harm than good. Short term use may be okay but I don't think long term use is good. Short term meaning a couple of days at best.

They make the problem feel better but do not correct the problem. I think probiotics & enzymes are much better & safer. Over the counter kills off the gastric juices which is at times the real issue, not enough gastric juices ..Just a thought.

Maybe get some PH testing paper & check your PH levels to see if your alkaline or acid....that may give you a hint.....

I agree don't rule out the gallbladder quite yet.....have they done any bacterial testing yet? It also could be some strain of a weird bacteria.....have you eaten any pork product lately?

Sorry I can't be more help but I hope I've given you a few things to check out.

Most of all get better soon.

blessings

mamaw

[Yoshi]

Sounds like what I went through 3 years ago. I had frequent burning pain in the middle of my breastbone, a constant ache behind my right shoulder and pain in my right side. I woke up in the wee hours of the morning with stomach and abdominal pains that kept getting worse. The pain was so bad, I couldn't stand up straight. I vomitted several times, even though I couldn't eat or drink anything. I went to the emergency room, and based on what I'd eaten the night before, was told I had food poisoning. Two days later, I wasn't any better. I was able to keep down Gatorade, but nothing else. I had abdominal bloating and pain but couldn't pass gas and hadn't had a BM since the night before I woke up sick. I went back to the emergency room, only to be told I was constipated.

Eventually, I got better. I knew it hadn't been constipation, so I spent tons of money I didn't have trying to find out what was wrong with me (no insurance). One doctor convinced me I had too much stomach acid, and possibly a hiatal hernia, and told me to take Prilosec. He couldn't have been more wrong, but I trusted him, even though the Prilosec wasn't working all that well. Five months after I had the first attack, I had another one just as bad. Of course, it was in the early morning hours. That time, I spent 5 days trying to ride it out, because I was pretty sure the doctors would give me the same song and dance as before. I didn't get better, and a friend convinced me to let her drive me to another hospital about 45 minutes away. My gall bladder had abscessed and ruptured. I ended up being in the hospital for 8 days. The first 2 days, I was given IV antibiotics to try to bring the infection under control so I could have surgery. I also had to have part of my liver removed where the gall bladder had recessed into it and created another abscess. The infection spread to my pancreas and destroyed most of the cells that make insulin. I have a 14" scar down the front of my body to remind me of the experience, as well as having to inject myself with insulin to stay alive.

The surgeon told me the pain I was feeling in the middle of my breastbone was from pancreatitis. The pain in my shoulder was from my gall bladder. The pain in my side was from my liver. The stomach and abdominal pain came from my digestive system shutting down. Ironically, I didn't have a hiatal hernia or excess stomach acid. During all the tests I had in the hospital, it was discovered I have Crohns disease. That at least explained many of the digestive problems I'd had most of my life. What wasn't caught was the gluten-intolerance, which I wasn't diagnosed with until just a few months ago.

If you feel something is wrong, trust your instincts. Keep pushing until you get some answers that feel right. I knew something was very wrong with me, but I gave up too easily, and it almost cost me my life. I'm fortunate that I ended up with a good surgeon and doctor. Sometimes you have to weed through a lot of bad doctors to get to the good ones.

[tictax707]

I am so so sorry you are feeling so frustrated. I understand how sometimes it just doesn't make any sense and it's completely maddening. I've got a thread started on feeling nuts about things, but it sounds like your battles are pretty tough to fight. Ultimately I would say trust your instinct. If you think it might be your gallbladder you should follow up on it. It could fit because avacados are high in the good fat, but the gallbladder problems can come from problems with fat (good and bad? I honestly don't know). I know zippo about the details so I will keep my very un-expert speculations to a minimum. I think that it is smart to stay away from the dairy just until things settle down a bit. It sounds like your body may have hit this inflamed "rut" and is just completely out of balance for a bit. I hope that you can find a way to give it some rest -keeping the diet simple, rice, bananas, broth... and that you can find relief very very soon. And I just remembered another thing that sucks is that when we get all upset and frustrated it just adds to our circulating stress hormones... (great...)

Anyway - here's a virtual hug and hoping for speedy changes for the better.

[Roda]

Roda, did the GI doc have any clues about what could have caused the esophagitis and ulcer? I thought ulcers these days were treated with antibiotics, that they were an infection? Am I wrong on that count? Or is it only h. pylori-caused ulcers? Had you been taking any NSAIDS or anything else that might have irritated your stomach?

Do you have a juicer? I read that fresh cabbage juice can help to heal a stomach ulcer Just a thought. So sorry you are still having such problems after all this time. 'They' are right when they say that life just ain't fair!

He didn't say what he thought might be the problem. I had two biopsies in the stomach. One was for H. pylori and the other biopsied the ulcer. Both were negative for H. pylori the bacteria associated mostly with ulcers. I don't take asprin at all and when needed I take ibuprofen maybe once a month or if I get my headaches every couple of months. I usually only take it a few days at a time, but I would take 600 mg every 6-8 hours. I can't think that caused it but who knows. On my hida scan they mentioned I had reflux into the stomach. It got me thinking that maybe I am refluxing bile into the stomach causing the gastritis and esophagatis. I like the mention by the other poster about the ph testing. This may help clairify which it could be.

[Roda]

Sounds like what I went through 3 years ago. I had frequent burning pain in the middle of my breastbone, a constant ache behind my right shoulder and pain in my right side. I woke up in the wee hours of the morning with stomach and abdominal pains that kept getting worse. The pain was so bad, I couldn't stand up straight. I vomitted several times, even though I couldn't eat or drink anything. I went to the emergency room, and based on what I'd eaten the night before, was told I had food poisoning. Two days later, I wasn't any better. I was able to keep down Gatorade, but nothing else. I had abdominal bloating and pain but couldn't pass gas and hadn't had a BM since the night before I woke up sick. I went back to the emergency room, only to be told I was constipated.

Eventually, I got better. I knew it hadn't been constipation, so I spent tons of money I didn't have trying to find out what was wrong with me (no insurance). One doctor convinced me I had too much stomach acid, and possibly a hiatal hernia, and told me to take Prilosec. He couldn't have been more wrong, but I trusted him, even though the Prilosec wasn't working all that well. Five months after I had the first attack, I had another one just as bad. Of course, it was in the early morning hours. That time, I spent 5 days trying to ride it out, because I was pretty sure the doctors would give me the same song and dance as before. I didn't get better, and a friend convinced me to let her drive me to another hospital about 45 minutes away. My gall bladder had abscessed and ruptured. I ended up being in the hospital for 8 days. The first 2 days, I was given IV antibiotics to try to bring the infection under control so I could have surgery. I also had to have part of my liver removed where the gall bladder had recessed into it and created another abscess. The infection spread to my pancreas and destroyed most of the cells that make insulin. I have a 14" scar down the front of my body to remind me of the experience, as well as having to inject myself with insulin to stay alive.

The surgeon told me the pain I was feeling in the middle of my breastbone was from pancreatitis. The pain in my shoulder was from my gall bladder. The pain in my side was from my liver. The stomach and abdominal pain came from my digestive system shutting down. Ironically, I didn't have a hiatal hernia or excess stomach acid. During all the tests I had in the hospital, it was discovered I have Crohns disease. That at least explained many of the digestive problems I'd had most of my life. What wasn't caught was the gluten-intolerance, which I wasn't diagnosed with until just a few months ago.

If you feel something is wrong, trust your instincts. Keep pushing until you get some answers that feel right. I knew something was very wrong with me, but I gave up too easily, and it almost cost me my life. I'm fortunate that I ended up with a good surgeon and doctor. Sometimes you have to weed through a lot of bad doctors to get to the good ones.

Thing is now I am not having any pain. No RUQ pain or referring pain to the shoulder, hence why the doc was reluctant to blame my gallbladder, and the fact the ultrasound was completly normal (I saw all the images when done and the us tech is extremely competent). I think after he found the ulcer he felt all the discomfort and symptoms were coming from that. I have to wait until Monday to call the office. Like a dummy I forgot the office is closed on Fridays. The ironic thing is that despite my issues no blood tests for liver or pancreas have been done. Hmm.

[Roda]

I am so so sorry you are feeling so frustrated. I understand how sometimes it just doesn't make any sense and it's completely maddening. I've got a thread started on feeling nuts about things, but it sounds like your battles are pretty tough to fight. Ultimately I would say trust your instinct. If you think it might be your gallbladder you should follow up on it. It could fit because avacados are high in the good fat, but the gallbladder problems can come from problems with fat (good and bad? I honestly don't know). I know zippo about the details so I will keep my very un-expert speculations to a minimum. I think that it is smart to stay away from the dairy just until things settle down a bit. It sounds like your body may have hit this inflamed "rut" and is just completely out of balance for a bit. I hope that you can find a way to give it some rest -keeping the diet simple, rice, bananas, broth... and that you can find relief very very soon. And I just remembered another thing that sucks is that when we get all upset and frustrated it just adds to our circulating stress hormones... (great...)

Anyway - here's a virtual hug and hoping for speedy changes for the better.

The frustrating thing is that I'm eating things that are good for me, like avacodos, using olive oil, nuts etc. and they make me as miserable as if I went out and ate greasy sausage and alot of it. The way I see it is that weather it's a good fat or bad fat, the gallbladder needs to excrete bile into the small intestine to digest it.

Rice is agreeing with me so far. I had to quit eating bananas because they were causing hearburn despite the zantac. Weird.

[Roda]

sorry you are feeling so poorly. I pray you find an answer & relief quickly. I have often read where Zantac,pepcid & so on only mask the problem & at times do more harm than good. Short term use may be okay but I don't think long term use is good. Short term meaning a couple of days at best.

They make the problem feel better but do not correct the problem. I think probiotics & enzymes are much better & safer. Over the counter kills off the gastric juices which is at times the real issue, not enough gastric juices ..Just a thought.

Maybe get some PH testing paper & check your PH levels to see if your alkaline or acid....that may give you a hint.....

I agree don't rule out the gallbladder quite yet.....have they done any bacterial testing yet? It also could be some strain of a weird bacteria.....have you eaten any pork product lately?

Sorry I can't be more help but I hope I've given you a few things to check out.

Most of all get better soon.

blessings

mamaw

I may persue ph testing, but I think it is uncomfortable since they have to put something down through your nose into the stomach. I take probiotics on a regular basis and I asked if there is some kind of digestive enzymes I could take before I had my scope. I don't have a problem taking the zantac right now. I needed some relief and I was not getting any. I asked a while back about low stomach acid causing reflux and the nurse didn't know what I was talking about. As far as some weird bacteria, I don't know. I had stool testing in March to look for all kinds of nasties and everything was normal. With all the other stuff coming back normal that is why I keep going back to something with the gallbladder.

[Roda]

I may ask about this Open Original Shared Link I'm sure I'll get the huh? look but it seems reasonable. I am reluctant to undergo surgery just to have my symptoms continue.

[lynnelise]

I no longer have a gallbladder but since it's removal I developed gastritis because bile is backing up into my stomach from the small intestine. That is a definate cause of gastritis and ulcers for some people! They gave me a medicine called carafate and it worked wonders!

[Roda]

I no longer have a gallbladder but since it's removal I developed gastritis because bile is backing up into my stomach from the small intestine. That is a definate cause of gastritis and ulcers for some people! They gave me a medicine called carafate and it worked wonders!

When I do reading on bile reflux it usually mentions that this is a problem for people that have had gastric bypass, stomach surgery and gallbladder surgery, however it has been documented in seemingly normal intact people. How did they find out that was the problem? Are you still taking it now or has the problem resolved? It is something else to consider as I have looked into it before.

[mamaw]

Hi Roda

I never heard of B-syndrome befrore, very interesting....but you can buy testing PH paper at a health store . It is not as good as going through the nostril but its simple & may just give you a clue...

Just hoping better health is or will come quickly.

[Black Sheep]

Roda, when you said "avocados" I went, "Aha!" Not that it's the avocados for sure, of course, but the pain, bloating, etc., you've described mirror almost exactly what happened to me when I at guac. It was some I made myself, so I know it was safe, and the stuff I put in it never bothers me--all of it, I've eaten lots of times since and been fine. This happened to me twice since going g.f. In fact, I was so mystified by it at first, I came here and started a thread about it, asking for info. and advice. That thread's here:

In fact I just posted something on it re. finding out that strawberries now do the same thing to me....and possibly other fruit, as well. Which is weird, as I've always been able to eat anything I wanted without an allergic reaction or sensitivity issue, except of course gluten. But since going g.f., either I've developed these sensitivities or they were always there but my body didn't react too strongly....I don't know, I don't understand it myself. But a lot of people here have said that it wasn't until after going g.f. that other foods began to bother them.

Someone suggested I be tested for food allergies, which my doc wants to do but I have to wait on the $$, since I don't have insurance. But in the meantime, I got some awesome herbal caps from her that knock the pain right out. Not the bloating, but at least the pain goes away. It's called RF Plus. They have things like bromelaine, cabbage, slippery elm, etc. in them. I got mine from my doc but I saw them online, here: Open Original Shared Link

Praying that you get relief!

[Roda]

Roda, when you said "avocados" I went, "Aha!" Not that it's the avocados for sure, of course, but the pain, bloating, etc., you've described mirror almost exactly what happened to me when I at guac. It was some I made myself, so I know it was safe, and the stuff I put in it never bothers me--all of it, I've eaten lots of times since and been fine. This happened to me twice since going g.f. In fact, I was so mystified by it at first, I came here and started a thread about it, asking for info. and advice. That thread's here:

In fact I just posted something on it re. finding out that strawberries now do the same thing to me....and possibly other fruit, as well. Which is weird, as I've always been able to eat anything I wanted without an allergic reaction or sensitivity issue, except of course gluten. But since going g.f., either I've developed these sensitivities or they were always there but my body didn't react too strongly....I don't know, I don't understand it myself. But a lot of people here have said that it wasn't until after going g.f. that other foods began to bother them.

Someone suggested I be tested for food allergies, which my doc wants to do but I have to wait on the $$, since I don't have insurance. But in the meantime, I got some awesome herbal caps from her that knock the pain right out. Not the bloating, but at least the pain goes away. It's called RF Plus. They have things like bromelaine, cabbage, slippery elm, etc. in them. I got mine from my doc but I saw them online, here: Open Original Shared Link

Praying that you get relief!

I don't think it is an allergy to the avacados. I have the same thing if I eat sausage or other things with fat. I suspected dairy so I have be dairy free but it did not improve things at all. I've definately got some things to chew on over the weekend. I'll put in a call to the doctor's office on Monday. I really wish they could see me at my worst. By the time I get an appointment I have played it safe with the blandest stuff possible or just not eating that I am no longer bloated or symptomatic. Hence the frustration. Interesting about the strawberries. I brought some tonight to work to eat.

[Roda]

Followed up last month with the GI doc. I tried a trial of welchol and it really didn't do much. Doc said maybe do stool testing for fat if it did not work and to check back. I then broke down and bought some digestive enzymes at the health food store and I really do think they help. They did not eliminate the problem completly, but made them less. I got the ones without the acid because I didn't want to cause problems for the ulcer. I notice when I take them I have less, if any reflux/heartburn and don't need to take my zantac unless I eat tomatoes or something very acidic. I ran out of them and the ones I ordered were not in yet and my symptoms came back with a vengence. I decided it was time to follow up with the gi doc and put a call in. He ordered the fecal fat test and I will do that here soon. I had started back on the enzymes and increased them and was feelin decent. I am going to stop them for several days, load up on fat rich food and then do the test. Really though I know I can not tolerate fat and can visibly see it floating when I use the restroom. Obvious it is fat malabsorption, but the 10 million dollar question is, what is causing it? Is it the gallbladder, pancreas or the celiac rearing it's ugly head? I had repeat blood work in Feb. and all were normal (AGA IGA and IgA tTg) with just the AGA IgG still being positive. Repeat biopsy was normal. I thought cc was an issue and cracked down on that. Is it worth repeating the blood work again? It can be hard not to blame the celiac for other issues, but I'm sure the gallbladder and pancreas can act up by itsself. I may see if the doc will repeat the Hida scan. If it is a dysfunctional gallbladder why would the pancreatic enzymes seem to help? It's all so confusing.

[Roda]

Well I did the dreaded fecal fat stool test and the nurse called me today. She told me that my test showed malabsorption and the doctor wants me to take prednisone for about a month and follow up. I told her I was very reluctant to take steroids and would rather discuss the issue in person with him. So I have an appointment next Tuesday. I knew the test would show excess fat, so no suprise there. After I did the test I started back on my enzymes and they have helped greatly. I still can't over do it with the fat, but at least if I eat some almonds or some fat I'm not miserable. Since taking them my stool has gone from diarrhea/loose/yellow to a more normal/brown but I can still see floating fat at times. However, despite the enzymes, I still have been consistently getting that cramping/pinching sensation in my right upper side more frequently. My plan is to ask for repeat celiac blood work, ask how steroids are supposed to help this, if this could be refractory celiac or potenial cc in my house, not related to the celiac at all or back to my original thought the gallbladder or pancreatic insufficiency. My husband agreed with me to discuss it first before subjecting myself to the steroids. I even told him if I have to eliminate gluten from the house for good that I would(we have a shared household). I think he is definately more receptive to the notion now because he knows I am serious. So anyone with any thoughts or input? I know pancreatic insufficiency can cause increased fecal fat, but can a dysfunctional gallbladder? I have been dealing with this since January and it's more than time to nip it in the bud!

[ravenwoodglass]

Well I did the dreaded fecal fat stool test and the nurse called me today. She told me that my test showed malabsorption and the doctor wants me to take prednisone for about a month and follow up. I told her I was very reluctant to take steroids and would rather discuss the issue in person with him. So I have an appointment next Tuesday. I knew the test would show excess fat, so no suprise there. After I did the test I started back on my enzymes and they have helped greatly. I still can't over do it with the fat, but at least if I eat some almonds or some fat I'm not miserable. Since taking them my stool has gone from diarrhea/loose/yellow to a more normal/brown but I can still see floating fat at times. However, despite the enzymes, I still have been consistently getting that cramping/pinching sensation in my right upper side more frequently. My plan is to ask for repeat celiac blood work, ask how steroids are supposed to help this, if this could be refractory celiac or potenial cc in my house, not related to the celiac at all or back to my original thought the gallbladder or pancreatic insufficiency. My husband agreed with me to discuss it first before subjecting myself to the steroids. I even told him if I have to eliminate gluten from the house for good that I would(we have a shared household). I think he is definately more receptive to the notion now because he knows I am serious. So anyone with any thoughts or input? I know pancreatic insufficiency can cause increased fecal fat, but can a dysfunctional gallbladder? I have been dealing with this since January and it's more than time to nip it in the bud!

I am not a doctor but I think the fact that the enzymes are helping so much is significant. If it was a gallbladder issue I don't think they would be helping so much. I could be wrong about that. I am glad your DH is open to the idea of a gluten-free house and you may want to take him up on that for a lest a while if not forever. I am glad the enzymes are helping and I hope the doctor has some answers for you when you see him. You may want to call the office and ask if you can get the panel done now so that you have the results when he sees you. Meanwhile eat as simply as you can and if you haven't already you may want to avoid dairy and soy for a bit also.

[Roda]

I did about a month and a half of dairy free and saw no significant changes. I don't seek out soy, but I know I get it in products. The only positive changes I have seen is when I eat virtually only rice and eggs or by taking the enzymes. I too think that is significant. I'm still at a loss for that sensation in my abdomen I get. Good idea to ask ahead for the blood work. I can call tomorrow, pick it up and have it drawn if they agree to it. THe nurse was understanding about my hesitation on the steroids. I don't want to take it unnecessarily and I definately don't want the side effects. I am also worried about how all of this might affect my vitamin/mineral levels. I just in April was able to get my ferritin up in the 30's range. Still low but much improved for me.

[Roda]

Well, I had my appointment today. I discussed everything I wanted to with him. He feels that it is my celiac acting up. I told him that I do not cheat at all and that yes, I have had a few accidents. I told him the only way I felt my diet wasn't strict enough was that I possibly could be getting cc'd from home still or low levels of gluten are affecting me from seemingly safe products. I also told him I had been taking the digestive enzymes (showed him what they were) and said my symptoms are less severe while taking them. I discussed my reluctance about the steriods and after talking to me he said he didn't feel the need to push them on me right now. But he did mention that some people with what he called "break through" need the help from the steroids short term. He said based on my fecal fat test I had significant malabsorption. I also mentioned that I had a hard time blaming the celiac soley since my symptoms are, what seem to me, directly related to fat consumption. I'm sure the celiac fits in some, but still have a hard time swallowing it. He said that my reactions to gluten can change(origianally presented with bad reflux and constipation and I never used to get D except when sick) and that my biopsy from this April showed some minor changes but no blunting. I'm wondering if low level exposure from the above possible sources could be enough to keep me irritated but not enough to raise my tTG? My last tTG was 5 (ref range >19 positive) in Feb. It has went down condiderible since my original at diagnosis which was I think around 78.

So the outcome from this is to have all the celiac blood work redone and blood tests for amalyse and lipase. I am also going in for a CT enterography scan and also special timed CT images of the pancreas. I had asked about if it would be helpful(plus he mentionded it last Dec.) and he said it would give some good info and ordered it. I stopped by work after my training at our sister facility to have our supervisor inquire if the volumen (the oral contrast(still barim) you drink for the enterograpy it is different from the liquid barium for regular ct abdomen) is gluten free. I asked her to check on the regular stuff too. Sure it's good info for me, but it will be good info to have if others have the same issue. So, if all is a go, I'm going to go in and have it on THursday morning. I don't do those scans at night so I was asking our other CT tech about it. You have to drink a total of three bottles of the blasted stuff, one bottle every 20 minutes. Then they place at least an 18 guage int into your arm to inject the IV contrast(It is a different concentration from the routine iv contrast too). From what she said is that the contrast makes you even more warm to hot as opposed to the regular contrast and she said alot of patients throw up after scan. Just what I wanted to hear! I had never had a CT scan of anything until last year after a car accident and that was of my neck. It shall make an interesting day since I have to go for my cross training after the scan. Ugg. I'll live. I am also going to try a trial of creon. Dr. told me I should be able to tell in a couple of weeks if it is helping. Also here is a link I had started on CT enterography in case anyone didn't know what it was.

Oh an as for the pancreas. I asked if it was possible to have a problem with enzymes without having pancreatitis. To my knowledge I have never had it, and from what I have seen patients can have alot of pain during acute pancreatitis. He told me that the small bowel does produce some of these enzymes too but not in the amount the pancreas does. So that maybe this is why the enzymes seemed to help me. I can't start taking the creon until this evening. Only one pharmacy in town has it, and they were closed yesterday afternoon. Hubby is going to fill it for me today.

[Roda]

I ended up going in for my scan tonight. Wow! that was weird! The oral contrast was gluten free as I called the company. It was really nasty and hard to get down especially since I have been bloated up since lunch time. The IV contrast did make me feel warm. It was like it started in the middle of my body and went out. The only way I can describe it was like "blooming". It will be read tomorrow, so I'll be anticipating the results. Oh and I managed not to get sick to my stomach. Horray!

[ravenwoodglass]

I ended up going in for my scan tonight. Wow! that was weird! The oral contrast was gluten free as I called the company. It was really nasty and hard to get down especially since I have been bloated up since lunch time. The IV contrast did make me feel warm. It was like it started in the middle of my body and went out. The only way I can describe it was like "blooming". It will be read tomorrow, so I'll be anticipating the results. Oh and I managed not to get sick to my stomach. Horray!

Glad you got this done. While I hope there is nothing serious going on I do hope you get some answers. Keep us posted.

[GFinDC]

I did about a month and a half of dairy free and saw no significant changes. I don't seek out soy, but I know I get it in products. The only positive changes I have seen is when I eat virtually only rice and eggs or by taking the enzymes.

Hi Rhoda,

It sure seems like if the limited diet helps then there might be something going on with your normal diet? I have to avoid soy and nightshades myself, plus carrots, turnips, dairy, garbanzo beans, probably some other things I am forgetting. Guess I am saying that you might need to really look at some other foods as possible problems besides gluten.

Soy causes me all kinds of problems and it takes a while to get over it's affects. Seems to me the affects build-up over time also.

You might also be sensitive to food colorings or preservatives in your diet.

Just some things to think about.

[Roda]

Well the good news is everything looks normal on the CT scan! I've been taking the creon when I eat and I have noticed a difference that I have not bloated up after eating (and hubby made hash for dinner one night which would have made me miserable). I still am working the oral contrast out of my system. It didn't bother me until almost 24 hours later. So I'll have to wait a little while longer to see if the creon helps any of the other symptoms. My blood work is still pending. I have decided that I am going to go back eating South Beach since I felt really good and lost some weight. I'm going to have to modify a bit since it is heavy on dairy. I don't think I need to overload on it. Hubby and I have been discussing compromises about the shared house too.

[Roda]

Well, I'm feeling a wee bit depressed this evening. I just recieved a call from the GI docs office and was told that my gliadin antibodies are still positive. My gliadin IgA was 13 (15 in Feb. 2010) and the IgG was 58 (61 in Feb. 2010) reference range was <19 neg and the other was a "strong positive". My fist tests for this were 6 months after diagnosis (only had tTg done/biopsy) and they were both positive then and the IgG has never been negative when retested in Feb. this year and last week. I don't want to take steroids! Doc feels that It is diet related. I don't ever intentionally eat gluten at all not to say accidents haven't happened. I am going on a complete elimination of anything that might be a possible problem. Then hubby and I are going to scrub down the house "again" and have that discussion about doing a trial of gluten out of the house. He is still a little reluctant. I did point out, despite his carefulness, that there is still cc problem areas. While the stuff inside the condiment containers is not cc'd the outsides are as so probably is the fridge handle. I know the computer keyboard is a disaster zone as are the cars and the dog and cat both eat gluten containing food. I also just discovered my youngest son has been "forgetting" to use soap and just rinsing his hands and drying them on the same towel we all use! I feel he is at an age that I don't need to babysit him to wash his hands but maybe that's what I need to do. I also have been questioning Bob's Red Mill products. I react very badly to certified gluten free oats and I know they are processed in the same facility as the other gluten free grains. Could contamination from oats raise the antibodies? At this point I'm grasping at straws. The other thing I worry about is refractory celiac but my tTg is negative at 5 (ref. range >19 positive.) Can you have refractory disease with a normal tTg and elevated gliadin antibodies? I'm feeling down in the dumps tonight about all of this and I also don't think the creon is doing much so there is nothing left but to get drastic. I just want to curl up on my bed an have a good cry.