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About Macmuireadhaigh

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  1. I had a blood test for celiac done about two years ago and it was negative, however my GI at the time said I could still have it. Basically when I eat gluten I get a metallic taste, and also deal with joint problems. Not eating gluten I don't taste metallic anymore, so not sure what that means. 

    I've been gluten-free for four months now because my insurance wouldn't pay for my procedures and I couldn't afford them out of pocket. So I decided to do what I could to help the situation and I've noticed I have less watery stools, and now my poop is more solid (yet still not one solid piece), however if I get soy or some other thing I'm not supposed to have I have loose stools again. 

    I guess when I do get my tests done I'll have to eat gluten for a bit so they can see, but my main concern is with PI, or pancreatic insufficiency. I should have clarified that my doctor didn't actually say chronic pancreatitis, he actually said pancreatic insufficiency, but I just assumed he meant the former. Now I'm beginning to wonder if he meant PI as a result of ongoing IBD. 

    So, your fat malabsorption was due to damage to the villi? I'm asking because you said now you don't have that problem anymore. How long did it take before you healed enough so that you no longer had fatty stools?


  2. How many of your doctors initially thought you had chronic pancreatitis?

    How many of you had fat malabsorption before or after diagnosis?

    I'm asking mainly because the biggest thing doctors look for in chronic pancreatitis is fat malabsorption, but what if you have it because of damage to your villi instead? How do they check know it's one and not the other? My first GI was under the impression I think that I had chronic pancreatitis, because my fat malabsorption rate was high. However, my new GI hasn't said anything about it, and my colonoscopy and endoscopy tests are scheduled next month.

    I don't drink, smoke, or do drugs, and the first two are main causes of chronic pancreatitis. I don't even have pain anywhere, which is a another typical sign for it. So, I'm just confused why a doctor wouldn't think damage versus chronic pancreatitis.


  3. I've been gluten-free now for about four months. Not so bad, but I'm still getting excessive gas from lots of foods, like milk, soy (D), even sometimes peanut butter (but only when I eat it in large amounts), and I'm tired of it. My face continues to lose weight even though I've managed to put on three or four extra pounds. What is happening? 

    Also, do any of you have more D whenever you get nervous, as if you had a nervous colon? I've had this since this all started and that's why I thought it was IBS. However, that doesn't cause malabsorption. I'm beginning to think I have IBS and something else.

  4. It definitely stops after about eight hours of eating, sometimes longer, because I didn't have it at all for weeks while on the gluten-free diet. Mind you, I didn't have pizza the whole few weeks either so IDK. 


    BellVie, you said that you used to get a similar taste in your mouth after eating baked goods, I'm guessing this was before you were diagnosed? So, then did you celiac cause this or was it a food alergy? Just a little confused.

  5. So, I've been on a gluten-free diet for a little over a month and decided to go out and try Dominos gluten-free pan pizza. Although they claim the ingredients are gluten-free, they clearly state that its made on the same tables as regular pizzas. There's a risk of cross-contamination. But that's not even my problem. I am undiagnosed and have went on the gluten-free until I can find out what's wrong. Here's my question. Since I've been off gluten for a month, I have not had a problem with vague metallic tasting, until tonight when I ate this pizza again. Nobody has been able to explain this to me, and I find it frustrating because it makes no sense. I was already tested for mercury and other poisonings, and I had none. I find it interesting that I haven't had a problem until eating this pizza (since being on the gluten-free diet), which is made on glutenous pizzas. Any thoughts?

  6. Over the past two weeks I've been experiencing some minor fatigue. Its weird too, because I can sleep ten hours, get up, then be tired still. I have a hard time getting out of bed, as well. I'll also mention that tonight has been the worst. I work third shift, which is 11-7AM, and I slept from about 7:30 yesterday morning until 5:00PM. By the time I got to work and around 2, I was ready for a nap! But it was odd, because mentally I'm not tired, but its almost as if my legs are weak and I just want to sleep. Is this common in IBD? I probably need to start taking my multi-vitamin again. Thanks.

  7. So, I'm undiagnosed. I've had loose stools for about 8 years, getting procedures done soon. I have a question, normally I have no pain at all. But the other night when I was laying down, I had to get up to go use the rest room and when I did I had a sharp pain in my my lower right area, like my appendix area. It didn't happen again after that. I tried pushing on it to see if maybe there was something going on, but nothing. This was like four nights ago. Then tonight I'm sitting around and if I bend a certain way, or sit a certain way, I get these vague and very unpredictable sharp pains, but they are so mild and go away so fast that I don't know what to think. Do celiacs get pain in this area or is it just people with ibd? And has anyone else had pain in this area?

  8. "End Stage Celiac" is not like end stage cancer. Don't let the term scare you. It means your small intestine villi are completely eroded flat and your digestion is all screwed up. It's the "end" of your villi, but not THE end. Your villi can heal and re-grow. In fact so easily and fast that just a few months on a gluten free diet can screw up your tests for the disease.


    Fat is digested by bile from your liver and stored and concentrated in your gallbladder. If you have floating stools, and you've had your gallbladder out, you can try taking a bile salt capsule with every fat containing meal. When I stated the bile salts, my poop sank, and smelled better! This also means the nutrients are being absorbed better.

    Where do I get bile salt?

  9. I was wondering, I've lost quite a bit a weight in my face since this all started two years ago, and I'm really depressed about it. When I look in the shady parts at my reflection, I can see how bad it really is. Has anyone else here had this issue and, if so, when you did get diagnosed how long did it take after being on medication or diet did you start to gain your facial weight back? 


    I know the facial weight loss has to do with malabsorption in my small intestine because I have fatty stools and did a fecal fat test to find out I was only absorbing about 70% of my daily fats. This varies I'm sure. But, over time it has done a number on my face. My GP told me men normally lose weight in their hands and face first, and this would make perfect sense for me because my face and now my hands have been the only part of my body that have lost weight. When this all started I weighed about 145, I now weigh 138 in two years. This would be much worse if I didn't drink Ensure's everyday and increase my caloric intake, but I've managed to slow down the process until my insurance will pay for my diagnostic testing endoscopy and colonoscopy. 


    - Jay

  10. I just noticed gravy does two things typically. One, like when I eat a rich gravy soup, especially canned, I get acid in my stomach and then sometimes inflammation. I haven't understood why gravy is such a big deal. Also, malt milk shakes give me really bad inflammation, and I know this because an hour after drinking it my stomach swells, and one of my eyes starts to hurt. Am I strange?

  11. I haven't been on the celiac sight for awhile, but I was looking over some posts and noticed some things that worried me. I read somewhere where someone said fatty stools are usually the end stages of celiac? What does "end" mean here? Very scary word. I've had fatty stool for about a year now and I'm waiting on my insurance to go back into effect in a couple of months so I can get my colonoscopy and endoscopy done. My blood tests are fine, but I have chronic "D" and malabsorption, specifically weight loss and fatty stools) in my small intestine. Now, I read that villi can heal themselves over time, but the way I read this one post it scared the crap out of me. With that said, overall I'm pretty healthy. I don't have bone problems (though I do have teeth enamel problems), I have a healthy appetite, no blood in my stool, no pale colored stools, just loose stools, and chronic "D". My biggest thing is I have a problem losing weight, but I've managed to maintain my weight by drinking Ensures, because I don't know of anything else I can get the nutrition and calories needed except through these. I also can't have too much dairy or I have a hard time digesting it, but in moderation I'm fine (for instance, I can have an ice cream cone, a bowl of cereal, etc, but if I eat a lot of dairy in one day I have problems). Also, for some reason, when I drink a malted-milk shake I get what I can inflammation, because I get eye inflammation from it, so I've learned not to get them anymore. I also get joint pain in the back of my neck at times, but nothing extreme and it normally goes away with sleep. If you guys can shed any light on the healing process specifically, and that things can get better, or that the villi can heal with time, it would be appreciated. Thanks.

  12. Lately, I've been noticing various things going undigested in my stool that I didn't have in it before. I know we don't digest corn, and that's why it comes out the way it does, but last week I noticed peas are starting to come out whole as well. And, I had rice last night and this morning there's a few pieces of rice in my stool. I know this isn't normal, but what can I do to help myself? Should I just not eat vegatables?

    I have seen a doctor about my digestive disorder, but I haven't been able to get my tests done yet due to my insurance lapsing and I'm waiting until next month so I can resign up for it. I did, however, get one test done with my gastroenterologist and he said I'm only absorbing about 70 percent of my daily fats. However, we don't know why yet and I can't see him again until next month. Any advice would be helpful.

  13. I eat basically whatever, or at least I did at the time I had been tested, which was like four months ago or so. At that time, I was eating a lot of out to eat food (I know, I know) just because it was easier for me. So, as for carbs, fats, etc. I can only say that I probably didn't have the best diet, but I always got away with it anyway since I have always been small framed and couldn't gain no matter what I ate. Now I drink 2 ensure's a day, which adds like 700 calories per day to my diet, and I try to eat less fattening foods - though not always.

  14. I'm needing some advice, and maybe some peer support. Right now, because I'm still waiting on my insurance to go back into effect, I don't know if I have Celiac, Chrohn's, or UC (or something else). However, regardless of whatever it is I do have, I'm fighting weight loss and the effects it has on my own self-confidence. When I started this weight loss thing, I weighed 140. I lost eight pounds and weighed 132. Now I weigh 136 only because I've increased my caloric intake per day. However, where ever I'm gaining it I don't know, and my biggest reason for wanting to gain weight is because my face is showing the full effects of the loss.

    I used to be fuller in the face, and now its like the fat in my face is all going away. It's more narrow, and you can see sinking parts in between my cheek bone and mouth, if that makes any sense. It's not so bad yet that I think everyone notices, but I see it and I do. I'm eating more, yet I'm still losing in my face. I don't understand. My doctor told me men usually lose weight in their face and hands first, but this is getting out of hand.

    You see, the problem is, if I weighed 200 pounds, losing a little weight wouldn't look so bad. However, I started out at 140! I've always been thin, small-framed, and losing weight for me doesn't look good. From what I understand, my steatthorea is the cause for my fat loss, since my gastro told me I'm only absorbing like 70 percent of my daily fats. But, something has to happen so that I start gaining back in my face...

    If nothing else, if any one of you have ever had to deal, or know of somone that has had to deal with this same problem, please let me know because it really bothers me a lot. Thanks.

  15. Althought I don't know what's wrong with me yet (seen a doctor, ordered tests, insurance lapsed and now I'm waiting for re-enrollment before I can reschedule for tests), lately I've been eating more breads, pastas, and various things with gluten in it, and I've been noticing that I'm starting to taste a little metal again (like before) and my joints are starting to hurt again. For a while I cut myself off of a lot of gluten foods because I realized my joints stopped hurting and I didn't taste metal, but I got curious and wanted to start eating regular foods again and now this.

    Are there definitive differences in symptoms between a celiac and a gluten-intolerant person? Would I know one from another by specific symptoms?

  16. So, since I've lost a good eight pounds from obvious steatorrhoea, which has been confirmed, aside from taking Creon, what kind of things should I do to help myself gain/keep weight? Less sugar consumption? Less fat intake? I have started eating more, and increasing my caloric intake to between 2500-3000 calories a day. I already have a fast metabolism, and I started out slim to start with. Originally I weighed 140, now I only weigh 132. I'm trying my best to keep this weight and gain more, but it's getting frustrating because I don't know even with the caloric increase if I'm actually gaining anything. Is there something you guys did to help this? Thanks.