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KatieKing

Rectal bleeding and abdominal pain

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I woke up this morning to blood clots in my stool and moderate abdominal pain slightly to the left of my belly button. The gastro wants me on a soup diet over the weekend and to report to the er to be admitted if I have anymore blood, increased pain or vomiting.  Anyone ever have this before diagnosis?

 

My backstory is a slew of mild neurological symptoms off and on for years, fainting, progressive nerve damage in my arms, memory/cognitive issues, balance/coordination/stumbling, joint pain, crippling fatigue, oh and hematomas of all things and the list goes on.  My neuro is running crazy amounts of tests right now and discovered a week positive for ttg igg so I have a scope scheduled at the end of the month. The gastro issues only began in late January, after I was given prednisone for "suspected pleurisy". After one day on prednisone I noticed the abdominal pain, after two days it was stabbing, and on the third day I went to the ER. All tests came back normal. The pain faded slowly but my pcp suspected a duodenal ulcer and referred me to gastro, but because I had an instance of rectal bleeding right before my appt with the gastro, he scheduled a colonoscopy instead. That came back normal the same time my neurological symptoms reached the point I obtained an emergency appt with the neuro and my lab rat journey began. There's a lot more, its been a bad year and half but I think this is the most relevant.

TISSUE TRANSGLUTAMINASE AB,
IGG -  7  (normal range 1-6)

TISSUE TRANSGLUTAMINASE AB,
IGA     1  (normal range 1-4)

ENDOMYSIAL ANTIBODY SCR
(IGA) W/REFL TO TITER - negative

Vitamins are tanked - many at the lowest minimum considered normal, except b12 which is mid-range with confirm test that I have no deficiency.

Anyone have the pain near the belly button - or am I maybe looking at another animal in addition to Celiac at this point?

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I woke up this morning to blood clots in my stool and moderate abdominal pain slightly to the left of my belly button. The gastro wants me on a soup diet over the weekend and to report to the er to be admitted if I have anymore blood, increased pain or vomiting.  Anyone ever have this before diagnosis?

 

My backstory is a slew of mild neurological symptoms off and on for years, fainting, progressive nerve damage in my arms, memory/cognitive issues, balance/coordination/stumbling, joint pain, crippling fatigue, oh and hematomas of all things and the list goes on.  My neuro is running crazy amounts of tests right now and discovered a week positive for ttg igg so I have a scope scheduled at the end of the month. The gastro issues only began in late January, after I was given prednisone for "suspected pleurisy". After one day on prednisone I noticed the abdominal pain, after two days it was stabbing, and on the third day I went to the ER. All tests came back normal. The pain faded slowly but my pcp suspected a duodenal ulcer and referred me to gastro, but because I had an instance of rectal bleeding right before my appt with the gastro, he scheduled a colonoscopy instead. That came back normal the same time my neurological symptoms reached the point I obtained an emergency appt with the neuro and my lab rat journey began. There's a lot more, its been a bad year and half but I think this is the most relevant.

TISSUE TRANSGLUTAMINASE AB,
IGG -  7  (normal range 1-6)

TISSUE TRANSGLUTAMINASE AB,
IGA     1  (normal range 1-4)

ENDOMYSIAL ANTIBODY SCR
(IGA) W/REFL TO TITER - negative

Vitamins are tanked - many at the lowest minimum considered normal, except b12 which is mid-range with confirm test that I have no deficiency.

Anyone have the pain near the belly button - or am I maybe looking at another animal in addition to Celiac at this point?

Did they run an IGA deficiency test?  You might need to request a full panel that includes the DGP tests.  Keep eating gluten daily or the tests can be false negatives.  Of course biopsies of the small intestine can help confirm a celiac diagnosis.  Be sure four to six tissue samples are taken! 

I hope you find answers! 

 

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Hi Katie,

I have bleeding and pain if I eat dairy.  Some people react to dairy protein.  I think they call it casein sensitive enteropathy.  I also have celiac disease and that could explain your vitamin levels being low.  I still have low vitamin D levels after years on the gluten-free diet.

Another condition you might want to research is Crohn's Disease.  Sometimes people have both Crohn's Disease and celiac disease.  Ulcerative colitis is another digestive disease that can cause problems.

For celiac disease you need to keep eating gluten as stated above, until all testing ids completed.  The usual testing is a blood draw to check for anti-gliaden antibodies and then a follow-up endoscopy to take biopsy samples.

http://www.cureceliacdisease.org/page/2/?s=vitamin+d

The cureceliac disease site is a good reference for celiac questions.

 

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Hi Katie,

I have bleeding and pain if I eat dairy.  Some people react to dairy protein.  I think they call it casein sensitive enteropathy.  I also have celiac disease and that could explain your vitamin levels being low.  I still have low vitamin D levels after years on the gluten-free diet.

Another condition you might want to research is Crohn's Disease.  Sometimes people have both Crohn's Disease and celiac disease.  Ulcerative colitis is another digestive disease that can cause problems.

For celiac disease you need to keep eating gluten as stated above, until all testing ids completed.  The usual testing is a blood draw to check for anti-gliaden antibodies and then a follow-up endoscopy to take biopsy samples.

http://www.cureceliacdisease.org/page/2/?s=vitamin+d

The cureceliac disease site is a good reference for celiac questions.

 

I did eat dairy on Thursday which I normally don't so that makes sense. I'll have to look into casein as well I guess. I have the biopsy in 10 days, so what are the best recommendations for diet after that? I was reading a bit about the auto-immune diet, is that the best way to heal?

I also read a bit on crohn's last night and thought that might be a possibility as well. I read that people with Crohn's can have ttg igg slightly elevated. 

These tests were run by my neuro, if my biopsy does not come back with anything then I will ask my gastro or pcp to run a more comprehensive celiac panel. I do not see an IGA deficiency on my results. I was only consuming gluten a few times a week for almost a year. Not because it gave me problems, simply because my loss of appetite and food aversion were so severe I pretty much only ate bananas, eggs, meat and veggies. Many days I really didn't eat at all. I have started eating gluten daily since I found out about the positive, just because I was told I need to before the biopsy. I go back and forth between trying not to and then doing it. I don't want anymore damage to my nervous system, but I will need a diagnosis for insurance to approve testing my children.

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Hi there Katie   I had both bleeding and belly button pain.  Bleeding was due to fissures, because just before diagnosis  I had terrible diarrhea and I think just got very sore.   Re: pain near belly button, I developed an umbilical hernia with my second pregnancy but didn't even notice it was there until I had burning pain there, I think when my little boy was still a toddler.  This would have been 2-3 years before my celiac disease diagnosis.    I saw a slight lump looking in the mirror which I had clearly missed for some time and then the doctor diagnosed it.   The pain receded for a while but now I am back to pre-celiac diagnosis weight, I find that if I get very bloated that pain returns.  I read recently - sorry, cannot think where - that hernias can take time to develop and may not be obvious at first.  I just noticed you said you have children so thought I would mention it as pregnancies are a big cause of these hernias in women. 

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Hi Katie,

You might want to wait a bit after the testing.  Make sure the doctors got the results they ordered.  Sometimes a lab will lose someones samples and they have to get re-tested.

But when you do start the gluten-free diet, it's best to eat whole foods you make yourself.  Meat and veggies with some nuts and fruit should be your primary diet.  Try to avoid all the gluten-free baked goods for a while as they are really not that good for you nutrionally.

You'll want to take a good quality multi-vitamin too.  Some people take liquid B-12 also, as it is supposedly easier to absorb.

Recovery from celiac involves changes in your gut biome, and that can cause some bloating and discomfort.  Dairy and carbs and sugar will make that worse.  So it's good to avoid those for a while also.  I suggest peppermint tea for bloating.

The first 6 months are sometimes kind of rough for people.   That doesn't mean you aren't getting better, just that it takes time for things to improve and settle down.  After you begin healing you may find yourself very hungry also.  Proteins are a good way to go there.  Your body needs to get nutrients to heal tissues properly.

Best wishes Katie!

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I had a lot of bad abdominal pain for at least 6 months.  A few of the ER nurses told me to watch soy.  I think they were on the right track because I ended up having a few other food intolerances besides gluten causing the pain.  Food intolerances are tough to figure out.  Could be anything, but there aren't tests to figure it out if it is a food intolerance aside from eliminating it for a while.

That being said, it sounds like you are on the right track going to a GI doctor.
I wonder if they checked your gallbladder? I'm assuming they would have done appendix with it being in that location.

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