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xcalibr

Lower left abdominal, left pelvic & other random pains

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I have heard if you can't get comfortable you should go to the ER. How do you know nothing is serious with the organs?  Have you had a CT or ultrasound or some scan?  If you've never had a scan the ER might do a CT to confirm it's nothing serious.  It depends on the ER doctor you get and what they think.
GI pains are often associated with food.
I can't advise too much because I'm just as frustrated with pain in my right side and waiting months for doctor's appointments.
Even though I know the ER isn't going to do anything, I'll go if the pain gets too bad.  It's worth every penny to know it's not serious.

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12 hours ago, flutegal64 said:

I have heard if you can't get comfortable you should go to the ER. How do you know nothing is serious with the organs?  Have you had a CT or ultrasound or some scan?  If you've never had a scan the ER might do a CT to confirm it's nothing serious.  It depends on the ER doctor you get and what they think.
GI pains are often associated with food.
I can't advise too much because I'm just as frustrated with pain in my right side and waiting months for doctor's appointments.
Even though I know the ER isn't going to do anything, I'll go if the pain gets too bad.  It's worth every penny to know it's not serious.

Yeh, I agree. I have not had any scans yet. My GI appointment is at the beginning of March, earliest they could see me. Pathetic. It's not "ER pain" honestly but I do have a high tolerance for pain. I've had great success in eliminating gluten over the past week or so but the lower left pain still won't seem to subside. If a gluten issue I had been abusing it since Thanksgiving, perhaps it will take a considerable amount of time to heal that area? Just wish the GI doc appointment was sooner.

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Hi Xcalibr,

One thing I've done successfully when I've gotten an appointment that isn't coming soon enough, is call the Dr's office on a regular basis and say, "Hi, I have an appointment with Dr X in March, but am wondering if he has any cancellations that are earlier?"  I've gone from having an appointment 8 weeks out, to 2 weeks.  You can also ask to be put on the cancelation list so if something comes up you may get in sooner.  Just a thought as waiting is often the hardest part.

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4 minutes ago, icelandgirl said:

Hi Xcalibr,

One thing I've done successfully when I've gotten an appointment that isn't coming soon enough, is call the Dr's office on a regular basis and say, "Hi, I have an appointment with Dr X in March, but am wondering if he has any cancellations that are earlier?"  I've gone from having an appointment 8 weeks out, to 2 weeks.  You can also ask to be put on the cancelation list so if something comes up you may get in sooner.  Just a thought as waiting is often the hardest part.

Hi, thank you. I was put on the cancel list but I hadn't thought about calling every couple of days also. Thank you so much for the advice.

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Just one thought ... if you manage to rule out GI sources of pain, and it isn't muscular skeletal pain referring to the lower abdomen/groin etc, it is worth finding out if you might have pelvic congestion.    I was told by a radiographer that this might be my problem, as she saw a lot of veins on the left hand side when she did a scan, but the gynecologist did not agree. I must admit having read up about it between these appointments I was disappointed that the gynecologist didn't agree as I really thought I had all the symptoms - the fact the pain gets so much worse with sitting all day long was the main reason I thought I had it.  Anyway, something else to consider....

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6 hours ago, xcalibr said:

Hi, thank you. I was put on the cancel list but I hadn't thought about calling every couple of days also. Thank you so much for the advice.

You're welcome...I hope it works for you...waiting while you feel bad is so hard!  I've done this successfully more than once and will do it again when I need to.

Have your celiac blood tests come back yet?  If you haven't heard, you can call them as well.  My Dr's office was just sitting on mine when I was diagnosed.  I'd gone back in as I was getting so weak from the all day D...and he's like oh, it looks like you've tested positive for celiac disease.   They'd had the results for a week.  Urgh!

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43 minutes ago, cristiana said:

Just one thought ... if you manage to rule out GI sources of pain, and it isn't muscular skeletal pain referring to the lower abdomen/groin etc, it is worth finding out if you might have pelvic congestion.    I was told by a radiographer that this might be my problem, as she saw a lot of veins on the left hand side when she did a scan, but the gynecologist did not agree. I must admit having read up about it between these appointments I was disappointed that the gynecologist didn't agree as I really thought I had all the symptoms - the fact the pain gets so much worse with sitting all day long was the main reason I thought I had it.  Anyway, something else to consider....

Something I never would have considered. I will do some research into it. Thank you so much for suggesting this. 

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19 minutes ago, icelandgirl said:

You're welcome...I hope it works for you...waiting while you feel bad is so hard!  I've done this successfully more than once and will do it again when I need to.

Have your celiac blood tests come back yet?  If you haven't heard, you can call them as well.  My Dr's office was just sitting on mine when I was diagnosed.  I'd gone back in as I was getting so weak from the all day D...and he's like oh, it looks like you've tested positive for celiac disease.   They'd had the results for a week.  Urgh!

Thank you. I actually just called yesterday. Nothing yet. 

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4 hours ago, xcalibr said:

Thank you. I actually just called yesterday. Nothing yet. 

Bummer...the wait goes on.  Well do keep following up on both, it sometimes helps just feeling like you're doing something.  I really hope you get answers soon and start feeling better!

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44 minutes ago, icelandgirl said:

Bummer...the wait goes on.  Well do keep following up on both, it sometimes helps just feeling like you're doing something.  I really hope you get answers soon and start feeling better!

I will, thank you!

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xcalibr,

There is a certain danger in going gluten free before you've had all the celiac testing. Now granted, maybe celiac isn't your problem but you should be thoroughly tested for it in light of what's going on with you. So here's the rundown.....

1) Your pcp may not have done the FULL, current celiac panel & you will need to retest to pick up the missing pieces.

2) Especially if the celiac serum panel comes back positive, the GI will want to do an endoscopy with biopsies

3) For any & all of the above you must have been eating a full gluten diet for some time. See:

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

4) Celiacs who go off gluten prior to having all testing done tend to react much more strongly when gluten is reintroduced for a gluten challenge. Many get so sick they are unable to complete the challenge which results in no dx. That's a big problem! 

5) If you are celiac, it takes time on the gluten-free diet to heal so pain can still be a factor for as much as 6 to 8 months, even a year or more. Granted, things should get better but symptoms will not magically disappear overnight.

6) You are likely getting cross contaminated even though you think you are gluten free right now. There is a steep learning curve to the diet. Read the Newbie 101 pinned to the top of the coping section & follow all the links contained therein. THAT is how you eat gluten free if you are a celiac.

7) While there is testing for celiac disease, there is not yet a test for gluten sensitivity (NCGS). Celiac damages the villi. NCGS has the same symptoms but there is no GI damage --- however, that does not mean that NCGS doesn't do damage somewhere. NCGS is still being researched to figure out the answers to these questions. 

8) A wheat allergy is a completely different reaction. Think ALLERGY. Throat swelling, face swelling, hives, trouble breathing, etc.... You don't say you have any of those symptoms. Celiac is an autoimmune reaction -- totally different from allergic reactions.

I hope this has answered a lot of your questions.

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11 hours ago, squirmingitch said:

xcalibr,

There is a certain danger in going gluten free before you've had all the celiac testing. Now granted, maybe celiac isn't your problem but you should be thoroughly tested for it in light of what's going on with you. So here's the rundown.....

1) Your pcp may not have done the FULL, current celiac panel & you will need to retest to pick up the missing pieces.

2) Especially if the celiac serum panel comes back positive, the GI will want to do an endoscopy with biopsies

3) For any & all of the above you must have been eating a full gluten diet for some time. See:

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

4) Celiacs who go off gluten prior to having all testing done tend to react much more strongly when gluten is reintroduced for a gluten challenge. Many get so sick they are unable to complete the challenge which results in no dx. That's a big problem! 

5) If you are celiac, it takes time on the gluten-free diet to heal so pain can still be a factor for as much as 6 to 8 months, even a year or more. Granted, things should get better but symptoms will not magically disappear overnight.

6) You are likely getting cross contaminated even though you think you are gluten free right now. There is a steep learning curve to the diet. Read the Newbie 101 pinned to the top of the coping section & follow all the links contained therein. THAT is how you eat gluten free if you are a celiac.

7) While there is testing for celiac disease, there is not yet a test for gluten sensitivity (NCGS). Celiac damages the villi. NCGS has the same symptoms but there is no GI damage --- however, that does not mean that NCGS doesn't do damage somewhere. NCGS is still being researched to figure out the answers to these questions. 

8) A wheat allergy is a completely different reaction. Think ALLERGY. Throat swelling, face swelling, hives, trouble breathing, etc.... You don't say you have any of those symptoms. Celiac is an autoimmune reaction -- totally different from allergic reactions.

I hope this has answered a lot of your questions.

I'm pretty sure my PCP did all the Celiac tests accept for the genetic testing, which I'm not even sure if my insurance would pay for. I understand what you're saying if it comes back positive but what if it comes back negative? I had been eating like normal prior to the test, not sure if it was a "full gluten" diet. Not sure what that would have entailed. I still wonder how the healing process compares if you have celiac disease vs NCGS. I will also read the Coping links you mentioned, thank you. 

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You're very welcome!

If you were eating like normal prior to the test then you were fine. I was just saying that going gluten free NOW, prior to the endoscopy can be a problem. Just so you're aware of that.

As to the question about the healing process with celiac vs NCGS, I can't help you. But that would be a very good thread for you to start. One has to consider that we are all individuals & our reactions & recovery can vary greatly form person to person. I would be interested in reading the responses on a thread asking about recovery from NCGS.

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4 hours ago, xcalibr said:

I'm pretty sure my PCP did all the Celiac tests accept for the genetic testing, which I'm not even sure if my insurance would pay for. I understand what you're saying if it comes back positive but what if it comes back negative? I had been eating like normal prior to the test, not sure if it was a "full gluten" diet. Not sure what that would have entailed. I still wonder how the healing process compares if you have celiac disease vs NCGS. I will also read the Coping links you mentioned, thank you. 

Pretty sure?  I strongly suggest you obtain and maintain all your medical records.  It is your right, after all!  Why?  Well, personally, my health provider does not allow PCP/GP doctors to order the entire celiac panel.  Most likely to save costs and to be fair, the TTG IgA is pretty good for most.  My health provider does allow GI doctors to order the complete panel.   Personally, I test negative to the TTG tests.  If my GI had not ordered the complete panel, my celiac disease would never have been caught.  Anemia was my primary symptom yet I had moderate to severe intestinal damage! 

If your testing comes back negative and your doctor strongly thinks you have celiac disease, the next step is still an endoscopy. 

http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

Only you can be your best health advocate!  

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Sorry, but the forum is not allowing me to properly edit today! 

It is late and I am making mistakes.  

I am just trying to encourage you to maintain your own records.  It also allows you to stay on top of your medical issues.  I know that some doctors resist any patient input, but my PCP/Internist has 2500 patients.  Does she really have time to follow-up on every hunch?  Plus, my neighbor is an ER doctor.  He uses Dr. Google on the job!  Doctors are human!  They can not remember every single detail of their training!  As long as you present it nicely......

Also, based on forum input, it appears that many doctors do not order the entire panel.  If only the TTG was ordered for you, I would ask for the rest of the panel.  

Oh, a full gluten diet is about 1 to 2 slices of bread (or equivalent) per the University of Chicago.  

 

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16 hours ago, squirmingitch said:

xcalibr,

There is a certain danger in going gluten free before you've had all the celiac testing. Now granted, maybe celiac isn't your problem but you should be thoroughly tested for it in light of what's going on with you. So here's the rundown.....

1) Your pcp may not have done the FULL, current celiac panel & you will need to retest to pick up the missing pieces.

2) Especially if the celiac serum panel comes back positive, the GI will want to do an endoscopy with biopsies

3) For any & all of the above you must have been eating a full gluten diet for some time. See:

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

4) Celiacs who go off gluten prior to having all testing done tend to react much more strongly when gluten is reintroduced for a gluten challenge. Many get so sick they are unable to complete the challenge which results in no dx. That's a big problem! 

5) If you are celiac, it takes time on the gluten-free diet to heal so pain can still be a factor for as much as 6 to 8 months, even a year or more. Granted, things should get better but symptoms will not magically disappear overnight.

6) You are likely getting cross contaminated even though you think you are gluten free right now. There is a steep learning curve to the diet. Read the Newbie 101 pinned to the top of the coping section & follow all the links contained therein. THAT is how you eat gluten free if you are a celiac.

7) While there is testing for celiac disease, there is not yet a test for gluten sensitivity (NCGS). Celiac damages the villi. NCGS has the same symptoms but there is no GI damage --- however, that does not mean that NCGS doesn't do damage somewhere. NCGS is still being researched to figure out the answers to these questions. 

8) A wheat allergy is a completely different reaction. Think ALLERGY. Throat swelling, face swelling, hives, trouble breathing, etc.... You don't say you have any of those symptoms. Celiac is an autoimmune reaction -- totally different from allergic reactions.

I hope this has answered a lot of your questions.

This response rocks!  :)

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13 hours ago, squirmingitch said:

You're very welcome!

If you were eating like normal prior to the test then you were fine. I was just saying that going gluten free NOW, prior to the endoscopy can be a problem. Just so you're aware of that.

As to the question about the healing process with celiac vs NCGS, I can't help you. But that would be a very good thread for you to start. One has to consider that we are all individuals & our reactions & recovery can vary greatly form person to person. I would be interested in reading the responses on a thread asking about recovery from NCGS.

I would like to know the differences too in the healing processes. Wonder which forum that should be started in? Thanks!

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9 hours ago, cyclinglady said:

Pretty sure?  I strongly suggest you obtain and maintain all your medical records.  It is your right, after all!  Why?  Well, personally, my health provider does not allow PCP/GP doctors to order the entire celiac panel.  Most likely to save costs and to be fair, the TTG IgA is pretty good for most.  My health provider does allow GI doctors to order the complete panel.   Personally, I test negative to the TTG tests.  If my GI had not ordered the complete panel, my celiac disease would never have been caught.  Anemia was my primary symptom yet I had moderate to severe intestinal damage! 

If your testing comes back negative and your doctor strongly thinks you have celiac disease, the next step is still an endoscopy. 

http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

Only you can be your best health advocate!  

Yes, they said they would be mailing me all my paperwork and results. I already got quite lengthy paperwork for the other blood tests. I just didn't ask at the time what was the exact name or type of celiac test(s) they were going to do. I will have to see what the results are and what test(s) were exactly done then I can proceed based on your information. Thank you so much! 

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9 hours ago, cyclinglady said:

Sorry, but the forum is not allowing me to properly edit today! 

It is late and I am making mistakes.  

I am just trying to encourage you to maintain your own records.  It also allows you to stay on top of your medical issues.  I know that some doctors resist any patient input, but my PCP/Internist has 2500 patients.  Does she really have time to follow-up on every hunch?  Plus, my neighbor is an ER doctor.  He uses Dr. Google on the job!  Doctors are human!  They can not remember every single detail of their training!  As long as you present it nicely......

Also, based on forum input, it appears that many doctors do not order the entire panel.  If only the TTG was ordered for you, I would ask for the rest of the panel.  

Oh, a full gluten diet is about 1 to 2 slices of bread (or equivalent) per the University of Chicago.  

 

Yep, agreed 100%. Thank you!

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45 minutes ago, frieze said:

have you checked out a chiro yet?

No, I have not. I'm still amazed that people have been finding relief visiting one. I found someone local that I was going to visit. Just hate to spend the money to only discover that they can't help. Ya know?

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Chiro?  Hubby went to one with a shoulder injury as recommended by our GP. It was a great experience.    I always resisted.  Why?  Just a "gut" feeling.  Good thing.  My bones started fracturing on their own.  I can not imagine anyone manipulating me now.  If you have celiac disease, get a bone scan first.  Just saying.......-_-

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13 hours ago, cyclinglady said:

Chiro?  Hubby went to one with a shoulder injury as recommended by our GP. It was a great experience.    I always resisted.  Why?  Just a "gut" feeling.  Good thing.  My bones started fracturing on their own.  I can not imagine anyone manipulating me now.  If you have celiac disease, get a bone scan first.  Just saying.......-_-

But is going to chiropractor directly related to relieving abdominal pain? Thanks!

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13 hours ago, cyclinglady said:

Chiro?  Hubby went to one with a shoulder injury as recommended by our GP. It was a great experience.    I always resisted.  Why?  Just a "gut" feeling.  Good thing.  My bones started fracturing on their own.  I can not imagine anyone manipulating me now.  If you have celiac disease, get a bone scan first.  Just saying.......-_-

Completely agree.  Wait to get all of your celiac testing done before you try something like this.  If you test positive for celiac then the treatment is a gluten free diet.  It takes a while to feel better, especially if there is a lot of damage.  But, it does happen with time.  Your blood tests should be back soon?  Though it's hard to wait when you don't feel well, try to be patient through this.

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