Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dr. Thinks Everything Is Ibs


jcgirl

Recommended Posts

jcgirl Apprentice

I can believe this and I swear if I hear this doctor say IBS one more time.....

Please excuse my ranting and raving, I am just so frustrated!!!!!!!!

I have been having sharp stabbing pains for about 4 weeks now, progressively getting worse so I made an appt with my GI locally. I have an appointment for 2nd opinion in October for gluten intolerance, etc.. I went to local doctor because of the pain. I go in and he says it is just a flare up of IBS. I asked how he could know this without any testing. So he orders an ultrasound. The tech told me to wate for the results and for them to call my doctor. After a 40 minute wate they tell I am free to leave. I found it strange that she had me stay. Anyway, I call the doctor and he says no gallstones so it is IBS and he wants to prescribe another type of pill. It makes me so angry to know that this man is so hooked on IBS that he does not rule out any other problems first. I have GERD and who knows, the pain could be from ulcers, could be pancrease, could be alot of differant things.

Five minutes later my phone rings and it is the pediatric GI in Rochester calling to tell me my son tested positive for Giardia. So I call my doctor back and demand a test. He seemed rather annoyed and said that is not your symptoms, I told him that yes, chronic diarehia has been my main symptom for the last 10 years and that no stool testing was ever ordered. I find it unbelievable that for the last 10 years not one doctor has ever ordered tests to rule out parasites. My test did come back negative, however he only ordered testing for giardia and not other parasites.

By the way I was diagnosed through enterolab as gluten intolerant.

Gluten Free sense January, 2005 with slip up here and there.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Where is your pain located?

jcgirl Apprentice

The pain is primarily on the right side just below and/or under rib cage and it radiates to the back. Also have some pain on left side in same area. Occasional pain in mid tummy area and feel like throwing up halfl the time. Any ideas?

jenvan Collaborator

It sounds a lot like gallbladder. Another possbility is sphincter of oddi dysfunction, you can look that up online. My doc thought I had that for a while--as I was having intense abdominal pain (center or right) with naseau...but all my ultrasounds and tests were normal. Also worth checking into might be pancreatitis. This happens in some Celiacs due to inflammation over time... Be advised too that some people with gallbladder issues do not have abnormal tests. It can be frustrating. Are you totally gluten-free? After several months my abdominal pain is almost entirely gone. It could be some type of inflammation that might heal itself. These things can be complicated. I would also recommend keeping a food and pain journal. You might begin to see a pattern of things you eat and your pain.

Bonnie Explorer

Hi jcgirl,

I may be way off here but I get exactly the same pain but on my left side - every time I get glutened. Its a sharp pain just under my ribs - takes my breath away at times its so sharp.

However, as Jen says you definitely need to rule out something more serious.

With regards to parasites - you are right to be concerned about this. I found out I was riddled with them, every type you can imagine from tapeworm to bilharzia. It has taken me 6 months to get rid of them. Now I take tablets every month over the full moon because thats when they hatch! These parasites cause havoc especially in our already compromised digestive tracts. It wouldn't do you any harm whatsoever to buy OTC deworming medication just in case.

I also read somewhere about pockets of air, diverticuli or something like that, that may cause such pains. Perhaps someone else can clarify.

Hope you get some answers soon - I swore that the next doctor who mentioned IBS to me was going to get headbutted!!! :lol:

Yvonne

nettiebeads Apprentice

I sure can't blame you for being so frustrated. Abdominal pain is hard to diagnose, but I think your dr is using the "dx of the day" or IBS as an easy out. I've had the same pain you've described - so nauseated that I couldn't hold down tap water. ER dr. didn't have a clue. Said it was my celiac. I think it was a gallbladder attack for me. The pain and nausea fit that pattern. And gallbladder problems are associated with celiac disease (don't we have fun?). Do you have to stay with this dr?

jcgirl Apprentice

Jen, the doctor didn't bother to say anything other than not gullstones and called in a prescribtion for IBS, some anti-spasm med. Needless to say I did not bother to fill it. I have an appt October 13th with a GI in Rochester, NY. My son's pediatric GI recommeded him. I am so pleased with the pediatric GI, he did not blow off everything we said and tested and tested until he got answers.

I have been gluten-free sense January but have had some slip ups. Tuff diet to follow.

I am actually looking forward to meeting with the new doctor with the hopes that he will do the proper tests to rule things out. I do not want to go back on gluten, however for a biopsy because I have felt so much better until recently. That is why I am sure there is something else going on such as gallblatter, pancrease, parasites, etc.

Thank you for the responses, I will keep you posted.

p.s.- my son finished up the meds for giardia and says he hasn't had diarehia for a couple days. Wouldn't that be great if it solves his problems. Keeping my fingers crossed


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



anerissara Enthusiast

I had that same pain last year on the right side, right under my ribs (in fact it was sort of located right around the bottom two ribs). My dr. also said it was IBS, that gas can build up and tends to build up in that area (which makes a sharp turn to the left), and can expand your intestine to the size of a softball (!) which could be causing the pain. This was also the visit in which he told me I couldn't have celiac's because I hadn't lost 15 pounds in the last few months....but when I went gluten-free the pain went away entirely.

Now, however, I have a pain that comes and goes in the *lower* right part of my gut. I am having a bad time right now keeping gluten-free and am very sensitive to any source of gluten, so I'm hoping that it clears up once I get rid of all the gluten in my system.

jcgirl Apprentice
I had that same pain last year on the right side, right under my ribs (in fact it was sort of located right around the bottom two ribs).  My dr. also said it was IBS, that gas can build up and tends to build up in that area (which makes a sharp turn to the left), and can expand your intestine to the size of a softball (!) which could be causing the pain.  This was also the visit in which he told me I couldn't have celiac's because I hadn't lost 15 pounds in the last few months....but when I went gluten-free the pain went away entirely.

Now, however, I have a pain that comes and goes in the *lower* right part of my gut.  I am having a bad time right now keeping gluten-free and am very sensitive to any source of gluten, so I'm hoping that it clears up once I get rid of all the gluten in my system.

<{POST_SNAPBACK}>

jcgirl Apprentice

I am wondering if maybe the pain is from getting glutened. Friday I know I got glutened and oh boy was the pains bad. I spent the entire day Saturday doubled over. I was ready to go to the ER however, I figured why bother. The doctors in my area have me soooooo discouraged!

skbird Contributor

I have read on this forum (or maybe another) about people going to the ER for pain. If you are diagnosed formally with Celiac, you may get some kind of treatment there, or maybe not, sounds iffy. Anyway, some have gotten iv's with anti-nausea and narcotic pain relievers. Some say having just a saline drip has helped some, especially if they can't stomach food. I haven't ever had pain that bad from gluten and I don't have an official diagnosis so it's not been worth my effort.

One time I got glutened I was seeing a chiropractor for back problems and he told me that I had developed a hiatal hernia and was having problems with my Ileocecal valve which is I think the valve that connects the small with the large intestine. That is on the low right side, below the ribs. He said it was contracted or something and that it was keeping all the toxins, etc in my small intestines, rather than letting them leave my system. While I am really impressed with his ability to work on my back and neck, I was a little skeptical about these appraisals because I didn't understand how a chiropractor would have much to do with gastro stuff. But I have talked with other people who have said this is what chiros do. So I don't know. I would believe these were problems I was having when glutened because I feel so terrible. But I don't know what to do about it other than go see him... (see why I was skeptical?)

Anyway, something to look into.

Stephanie

specialdiets Newbie
I can believe this and I swear if I hear this doctor say IBS one more time.....

Please excuse my ranting and raving, I am just so frustrated!!!!!!!!

I have been having sharp stabbing pains for about 4 weeks now, progressively getting worse so I made an appt with my GI locally.  I have an appointment for 2nd opinion in October for gluten intolerance, etc..  I went to local doctor because of the pain.  I go in and he says it is just a flare up of IBS.  I asked how he could know this without any testing.  So he orders an ultrasound.  The tech told me to wate for the results and for them to call my doctor.  After a 40 minute wate they tell I am free to leave.  I found it strange that she had me stay.  Anyway, I call the doctor and he says no gallstones so it is IBS and he wants to prescribe another type of pill.  It makes me so angry to know that this man is so hooked on IBS that he does not rule out any other problems first.  I have GERD and who knows, the pain could be from ulcers, could be pancrease, could be alot of differant things.

Five minutes later my phone rings and it is the pediatric GI in Rochester calling to tell me my son tested positive for Giardia.  So I call my doctor back and demand a test.  He seemed rather annoyed and said that is not your symptoms, I told him that yes, chronic diarehia has been my main symptom for the last 10 years and that no stool testing was ever ordered.  I find it unbelievable that for the last 10 years not one doctor has ever ordered tests to rule out parasites.  My test did come back negative, however he only ordered testing for giardia and not other parasites. 

By the way I was diagnosed through enterolab as gluten intolerant.

Gluten Free sense January, 2005 with slip up here and there.

<{POST_SNAPBACK}>

My mother had similar pains for 7 weeks. Initial gallbladder tests didn't reveal stones or problems. However, she had some test that checked the functioning of the gallbladder and it showed it was only working at about 20%. She had surgery to remove it and the doctor stated that it was just diseased...no stones. However, it took 3 visits to the ER and about a dozen trips to doctors to finally get any result. Most doctors agreed there was nothing wrong with the gallbladder - they were wrong!

While your specific problem may or may not be gallbladder, don't give up trying to find the answer. Go to another doctor who can run many different tests. I will never understand those lazy doctors who diagnose an illness without running any tests.

Sunni

jcgirl Apprentice

Just an update, still getting the pains, they tend to come and go. Some days not as bad as others. I have been careful when eating so as not to get glutened. I will ask the new doctor to check out how my gullblatter is functioning. I have also been experiencing pain in my neck that radiates into my head, like a dull nagging headache and very very tired. These new symptoms have been going on for about 4 days. Any possible relationship to the pains in the gullblatter area?????

I of course have not gone to doctor, well because he would just say "Oh it's a flare up of IBS"

And speaking of stupid doctors, took my son to pediatrician because a chronic vomitting, his GI spoke to Pediatrician and told him what tests to order. GI is a 2 hour drive. Anyway, Pediatrician tells me results are fine and the vomitting my all be in his head and he wanted to put him on mild anti-depressant. I was in friggin shock! The poor kid couldn't keep anything down for 5 days. I called the GI office next morning and they got the results, said it was from all the infection in his intestines that was causing vomitting and to by no means put him on anti-depressant.

Sorry for venting, it just seems to get worse with doctors in my area rather than better. I bet they have our files flagged as Pain in Butt patient/parent.

judy05 Apprentice
Just an update, still getting the pains, they tend to come and go.  Some days not as bad as others.  I have been careful when eating so as not to get glutened.  I will ask the new doctor to check out how my gullblatter is functioning.  I have also been experiencing pain in my neck that radiates into my head, like a dull nagging headache and very very tired.  These new symptoms have been going on for about 4 days.  Any possible relationship to the pains in the gullblatter area?????

I of course have not gone to doctor, well because he would just say "Oh it's a flare up of IBS"

And speaking of stupid doctors, took my son to pediatrician because a chronic vomitting, his GI spoke to Pediatrician and told him what tests to order.  GI is a 2 hour drive.  Anyway, Pediatrician tells me results are fine and the vomitting my all be in his head and he wanted to put him on mild anti-depressant.  I was in friggin shock!  The poor kid couldn't keep anything down for 5 days.  I called the GI office next morning and they got the results, said it was from all the infection in his intestines that was causing vomitting and to by no means put him on anti-depressant. 

Sorry for venting, it just seems to get worse with doctors in my area rather than

better.  I bet they have our files flagged as Pain in Butt patient/parent.

<{POST_SNAPBACK}>

I had the same type of pain in the right side and right back. I had 4 different test for GB, all were normal. When I had my Colonoscopy my Dr said I had a lot of air in my abdomen and I need to take fiber pills every day. I suffered quite a few months with it but it went away, the fiber pills do help. Now the only time it occurs is if I have been glutened. I am also on a small dose of antidepressant to help me sleep and it helps also.

specialdiets Newbie

I asked my mother what the gallbladder function test was called so you could request it. She said it was a 'nuclear scan'. Hope this helps.

Sunni

jenvan Collaborator

i also know a few here had a hide-a-scan done for their gallbladder too.

jcgirl--can't believe the doc wanted to put your son on antidepressents. like that is a "cure-all!"

jcgirl Apprentice

I will mention the nuclear scan and hide a scan to the new doctor.

Jen, I wanted to pop the doctor when he brought up antidepressant. For me it doesn't do a darn thing for my GI problems, on the brite side, I don't nag the kids as much about leaving their shoes in front of the door, must be the drugs (happy pills) B)

jenvan Collaborator

jcgirl- ha ha on the shoes ! an anti-d would probably make me a little less anal retentive...my husband would like that :)

  • 2 weeks later...
jcgirl Apprentice

Well I went to the new GI yesterday. What a horrid drive, 3 hours of constant rain with windshield wipers that need replacement (thanks hubby for letting me know ;) The appointment went well, I guess. The doctor wants repeat all the tests that I have had done in the last 2 years, including to my HORROR another colonoscopy. He seemed puzzeled that my previouse doctor went from colitis, to inflammatory bowel to IBS over the past few years. He also sensed how upset I have been. When I told him of my improvement with the gluten free diet he flipped back through the rather limited file that my old doctor sent and said that he did NOT in fact perform the celiac panel. So new doctor ordered the IGA and TTG, I guess the others were performed???? I mentioned about a false negative being that I have been gluten free and he rampled something off about wanting to see if I had the antibodies or an IGA deficiancy. Anyway, I figured what the heck, at least he ordered some tests and compliantly walked down the hall to dracula :P

I did not mention my Enterolab results as I am waiting to see how things go with the testing he has ordered. Didn't feel like being possibly blown off.

The edoscopy and colonoscopy are not until 12-7-05 so I am debating on starting to consume gluten and be sure he does a biopsy. Not sure if I can handle the pain though.

Oh, he couldn't believe when I told him my home was flooded twice last year and my doctor didn't have me tested for parasites when I presented a few weeks later with symptoms. Isn't parasites first thing to test for??????

I shall keep you all posted. Also, the pains in my side come and go lately, not as bad as a few weeks ago.

CeliacMe Rookie

THAT'S HILARIOUS!! Your doctor thinks its IBS. IBS isn't a real diagnosis, it just means they can't figure out why you have problems with diarrhea and constipation.

jcgirl Apprentice

Well the bloodwork from new GI is in. Everything is within normal ranges. Celiac panel-normal. In my humble opinion, it is a false negative as I have been gluten-free for 10 months. I am going to continue to be gluten-free based on enterolab, inprovement with diet and how I felt when ingesting gluten. :( No more cheating and having a beer or two. Time to become a wine expert :P

I really wanted doctor dx, mainly because of my son and his symptoms

At least I finally got a prescription for GERD which I was told 2 years ago that I had and to take mylox. By the time my scope comes up in December, the damage in esophogus will be healed and then they can all tell me it is all in my head and that I have IBS of the brain or something :rolleyes: .

As for anti-depressant that the dumb doc gave me, I quit it. Feeling a bit sorry for the kids though, I am a grump. Hope the come down from the un-needed drug wears off soon. They better take care of those shoes for next couple weeks, lol

CeliacMe Rookie

Can we please stop saying IBS as if it were an actual disease, rather than a symptom? I hate IBS, the mere mention of it sickens me. It just means that my doctor has given up trying to figure out why I have digestive problems, so he's gonna slap this label on me and tell me to take fiber con, aviod milk and write an rx for an anti-spasmodic. Way to go Doc! That's like the equivalent of me not being able to find a bill or something at work and shoving it in a draw, labeling it misc. and forgetting about it!

  • 2 weeks later...
danikali Enthusiast

"By the way I was diagnosed through enterolab as gluten intolerant."

May I ask what this enterolab is? I keep reading different posts and I see how people were confirmed through this. I am having TONS of problems with doctors, going to a new GI now. You are SOOOOOO right, they all think it's IBS. To tell you the truth, I don't even know if I believe in IBS anymore! There's always got to be some underlying reason for things, and it seems like IBS is their "easy out." I have not ever been tested for Celiac yet, though I am almost positive I have it because we all know our own bodies best, am I right?

Anyway, if you could give me more info. on the enterolab, I would appreciate it. I live in NYC, if that makes any difference. I want to cover all ends, just in case I have another problem with this GI, too.

Rusla Enthusiast
"By the way I was diagnosed through enterolab as gluten intolerant."

May I ask what this enterolab is? I keep reading different posts and I see how people were confirmed through this. I am having TONS of problems with doctors, going to a new GI now. You are SOOOOOO right, they all think it's IBS. To tell you the truth, I don't even know if I believe in IBS anymore! There's always got to be some underlying reason for things, and it seems like IBS is their "easy out." I have not ever been tested for Celiac yet, though I am almost positive I have it because we all know our own bodies best, am I right?

Anyway, if you could give me more info. on the enterolab, I would appreciate it. I live in NYC, if that makes any difference. I want to cover all ends, just in case I have another problem with this GI, too.

<{POST_SNAPBACK}>

When doctors are too lazy to do their job right or they just aren't smart enough they call it IBS, Menopause (if you are a woman), the flu, stress etc. Instead of looking for the real reason. The doctor who almost let me die from pernicioua anemia called it everything but jock itch for a year. Doctor problems in North America are resounding. It seems like the majority of us on here have gotten run around after run around from lazy inefficent doctors. You can bet your bootie that if it was them or their family there would be no messing around.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,302
    • Most Online (within 30 mins)
      7,748

    Mamacin
    Newest Member
    Mamacin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.