Distended Abdomen...celiac?

[mezzo9673]

Thank your for taking the time to view my post! For the past year I have had severe abdominal distention. When I wake up in the morning, it is only slightly distended, but bloats out a lot after eating ANYTHING (sometimes looks like I'm 5 or 6 months pregnant, and lasts for hours). I also frequently have excessive gas. I finally saw a doctor today who suspects I may have celiac disease, but I won't know for sure until we review my blood work @ my next appointment in 2 weeks. I've been reading a lot of the posts on this forum and am suprised to not have read anyone with the same abdominal distention as I have. I do also have symptoms sush as unexplained anxiety from time to time, gas, heart palpatations once in awhile, and fatigue/low energy... but I do not have any sort of pain or cramping (unless I eat something heavy) and my bowel movements are regular and healthy. I suppose maybe symptoms vary between individuals with this disease, but I'm wondering if anyone shares my problem with the "permanent" distended abdomen! Anyway, I'm very nervous to possibly find out I have this disease. Not only will it be a major lifestyle adjustment (never eating bread anymore OMG!), but possibly developing osteoporosis, anemia, or becoming infertile absolutely terrifies me :/

[MsCurious]

Thank your for taking the time to view my post! For the past year I have had severe abdominal distention. When I wake up in the morning, it is only slightly distended, but bloats out a lot after eating ANYTHING (sometimes looks like I'm 5 or 6 months pregnant, and lasts for hours). I also frequently have excessive gas. I finally saw a doctor today who suspects I may have celiac disease, but I won't know for sure until we review my blood work @ my next appointment in 2 weeks. I've been reading a lot of the posts on this forum and am suprised to not have read anyone with the same abdominal distention as I have. I do also have symptoms sush as unexplained anxiety from time to time, gas, heart palpatations once in awhile, and fatigue/low energy... but I do not have any sort of pain or cramping (unless I eat something heavy) and my bowel movements are regular and healthy. I suppose maybe symptoms vary between individuals with this disease, but I'm wondering if anyone shares my problem with the "permanent" distended abdomen! Anyway, I'm very nervous to possibly find out I have this disease. Not only will it be a major lifestyle adjustment (never eating bread anymore OMG!), but possibly developing osteoporosis, anemia, or becoming infertile absolutely terrifies me :/

Unfortunately, I too suffer from this... as does my sister. I look completely normal in the morning, and can eat one wrong thing and blow up just like someone used a tire pump on my stomach...its EXTREMELY uncomfortable. I think its pretty common... usually referred to here as "bloating"... you'll see it quite often. Hope you have success figuring out what's going on with you. Several of us are still in the "testing phase"... its a long wait. We're here if/when you need us.

[mushroom]

Welcome to the board, Mezzo. Keep reading on here - you will find oodles of post about abdomen distention, bloating, gas, heart palpitations. These are all classic gluten intolerance symptoms around here. It is an anxious time waiting for testing results, but even if your tests come back negative that does not mean that gluten is not the culprit. There is both a 20% error rate in the testing for celiac, and also, as is now being recognized by the doctors, a non-celiac gluten intolerance which requires a gluten free diet just as much as celiac disease does. Sorry to be a little joy-germ here , but you may as well know it now as keeping your hopes up until after you get your results. For those who test negative (and many test negative on both blood and biopsy) the only present way of determining whether gluten is a problem is to eliminate it (which is, after all, a lot cheaper than a bunch of tests) You can also do the genetic testing to see if you have the predisposition for celiac, but just having the gene is not diagnostic - many people who carry the gene have no problems with gluten. There are also some other food intolerances that can mimic some of the celiac symptoms, like lactose/casein and corn, also soy, and sometimes we have to eliminate these too and then challenge them to see if they are a problem.

If you eliminate your food intolerances you should not develop any of the side effects that they cause if you do not already have them. That's the good news. It's like quitting smoking - after 5 years you go back to the normal population statistics.

[mezzo9673]

Unfortunately, I too suffer from this... as does my sister. I look completely normal in the morning, and can eat one wrong thing and blow up just like someone used a tire pump on my stomach...its EXTREMELY uncomfortable. I think its pretty common... usually referred to here as "bloating"... you'll see it quite often. Hope you have success figuring out what's going on with you. Several of us are still in the "testing phase"... its a long wait. We're here if/when you need us.

MsCurious, I'm sorry you are suffering from this same problem, but truthfully it feels comforting to hear I'm not alone. What kind of tests are you getting done? I got my blood tested and sometime next week I go for an ultrasound. I really hope it doesn't take too long to figure out what's going on, this is just so scary..let me know how it goes with you please! P.S. How old are you? I just turned 25.

[mezzo9673]

Welcome to the board, Mezzo. Keep reading on here - you will find oodles of post about abdomen distention, bloating, gas, heart palpitations. These are all classic gluten intolerance symptoms around here. It is an anxious time waiting for testing results, but even if your tests come back negative that does not mean that gluten is not the culprit. There is both a 20% error rate in the testing for celiac, and also, as is now being recognized by the doctors, a non-celiac gluten intolerance which requires a gluten free diet just as much as celiac disease does. Sorry to be a little joy-germ here , but you may as well know it now as keeping your hopes up until after you get your results. For those who test negative (and many test negative on both blood and biopsy) the only present way of determining whether gluten is a problem is to eliminate it (which is, after all, a lot cheaper than a bunch of tests) You can also do the genetic testing to see if you have the predisposition for celiac, but just having the gene is not diagnostic - many people who carry the gene have no problems with gluten. There are also some other food intolerances that can mimic some of the celiac symptoms, like lactose/casein and corn, also soy, and sometimes we have to eliminate these too and then challenge them to see if they are a problem.

If you eliminate your food intolerances you should not develop any of the side effects that they cause if you do not already have them. That's the good news. It's like quitting smoking - after 5 years you go back to the normal population statistics.

Thank you mushroom for your advice. I will definetely keep that all in mind! My doctor recommended continuing to eat food with gluten for the next week, and going gluten free the following week to see if there's a difference in my symptoms, but after reading how gluten is literally a poison to people with celiac, I am terrified to eat even a piece of bread knowing it's damaging my intestine

[MsCurious]

Welcome to the board, Mezzo. Keep reading on here - you will find oodles of post about abdomen distention, bloating, gas, heart palpitations. These are all classic gluten intolerance symptoms around here. It is an anxious time waiting for testing results, but even if your tests come back negative that does not mean that gluten is not the culprit. There is both a 20% error rate in the testing for celiac, and also, as is now being recognized by the doctors, a non-celiac gluten intolerance which requires a gluten free diet just as much as celiac disease does. Sorry to be a little joy-germ here , but you may as well know it now as keeping your hopes up until after you get your results. For those who test negative (and many test negative on both blood and biopsy) the only present way of determining whether gluten is a problem is to eliminate it (which is, after all, a lot cheaper than a bunch of tests) You can also do the genetic testing to see if you have the predisposition for celiac, but just having the gene is not diagnostic - many people who carry the gene have no problems with gluten. There are also some other food intolerances that can mimic some of the celiac symptoms, like lactose/casein and corn, also soy, and sometimes we have to eliminate these too and then challenge them to see if they are a problem.

If you eliminate your food intolerances you should not develop any of the side effects that they cause if you do not already have them. That's the good news. It's like quitting smoking - after 5 years you go back to the normal population statistics.

Mushroom ... that was such a nice, easy to understand, comprehensive summary... nicely done! Very helpful, to people just arriving, I'm sure! I speak from experience... your comments such as this... and those of other people sure helped me get through the terrified, confused, scared first days of "learning" on here. Thanks again for that!

[mezzo9673]

I replied to both the responses from mscurious and mushroom, but I don't see them posted. Thanks so much to both of you! It sucks that we have to go through this, but comforting to know we're not alone. MSCURIOUS...please let me know about biopsy results! Mushroom..thanks for the advice, I will definetely keep that all in mind

[mushroom]

mezzo, for new members there is a delay until your posts appear because they do require approval by a moderator first. (I was having my dinner ) Don't worry, you'll soon pass the threshold where they come through automatically.

[JoLynneS]

Thank you mushroom for your advice. I will definetely keep that all in mind! My doctor recommended continuing to eat food with gluten for the next week, and going gluten free the following week to see if there's a difference in my symptoms, but after reading how gluten is literally a poison to people with celiac, I am terrified to eat even a piece of bread knowing it's damaging my intestine

Definitely continue to eat gluten till you get tested. If you stop eating it, the test results won't be accurate. I tested negative a few years ago and I recently went off gluten. I feel awful when I do get a little bit by accident, so I'm assuming I have gluten intolerance. But in a way, it would be nice to have an official diagnosis.

Best of luck to you.

[Cara in Boston]

I would caution you against going gluten free before the tests are done.

I have all the symptoms (well, not all, but plenty). I tested positive on my original blood test. In the time I was waiting to meet with the GI doctor, I tried going gluten-free to see if my symptoms resolved (really, who can resist?) When I saw the GI doctor, he did another blood test and scheduled an endoscopy - after only 10 days of being gluten-free. Both came back negative. Maybe because of going gluten-free, maybe not? We don't know. Now I have to wait even longer (3 months eating regular diet) to have an opportunity to get a more accurate test done.

This is all very frustrating since I am pretty sure I have it (son tested positive too - coincidence? probably not) but I'd like to be as sure as possible.

Also, the 10 days gluten free was not really long enough to see a change. You are likely to feel WORSE in the begining. Trying it out for just a week won't really tell you anything but it may make further testing that much more unreliable.

Good luck -

Cara

[NateJ]

I would caution you against going gluten free before the tests are done.

I have all the symptoms (well, not all, but plenty). I tested positive on my original blood test. In the time I was waiting to meet with the GI doctor, I tried going gluten-free to see if my symptoms resolved (really, who can resist?) When I saw the GI doctor, he did another blood test and scheduled an endoscopy - after only 10 days of being gluten-free. Both came back negative. Maybe because of going gluten-free, maybe not? We don't know. Now I have to wait even longer (3 months eating regular diet) to have an opportunity to get a more accurate test done.

This is all very frustrating since I am pretty sure I have it (son tested positive too - coincidence? probably not) but I'd like to be as sure as possible.

Also, the 10 days gluten free was not really long enough to see a change. You are likely to feel WORSE in the begining. Trying it out for just a week won't really tell you anything but it may make further testing that much more unreliable.

Good luck -

Cara

I agree. I went gluten free before my biopsy and haven't not felt any better at all. Some days are worse than others probably depending on what i eat. But so far I haven't been able to find what my trigger is.

My scopes did show the inside of my stomach is completely red. But my glorious GI doesn't seem to think that is abnormal and has yet to call me with reviewed biopsy results or any type of treatment plan.

So, resolve is probably the key here. Thats what everyone preaches to the new people. Sticking with diets and following up with Drs. It is exhausting but hopefully there is light at the end of our tunnels.

[JenHarris]

I definitely have similar symptoms to you. I've measured and found as much as a 5 inch difference in my waistline on days that I bloat. Prime example... I felt ok all day yesterday after being gluten free for the first time in a month (gluten challenge for testing). Then I went to dinner with some friends. The corn tortilla chips and tortillas were supposedly gluten free, but somehow I got dosed and I was up half the night with severe distension, nausea, severe stomach upset and cramping. I'm still bloated today and have cramping, but nausea is gone.

I get my blood test results on Monday hopefully. Hang in there.

[karagog]

I used to get the distended abdomen before cutting out gluten. I have not been diagnosed with anything yet, but after nixing gluten from my diet it only took 24 hours for me to notice a difference. I have been off gluten for 2 weeks now, and I have never felt better. No more bloating.