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Researching For 3 Weeks, Think I Have Sibo Or Celiac, But Not All Symptoms :(
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I'm going to try to summarize this to keep ti short - please bear with me.   I haven't had issues consistently for my entire life, but did, as I was gowing up, have a few instances of diagnosed 'COLITIS' 

 

Nothing really was thought about that - and maybe it's normal - I went to the doctor less than 5 times i think forthis particular thing up until I was about 18, but thought I would mention it.

 

Fast forwad to last year.  Severe stomach pains - double you over type pains - but no diarrhea or constipation, just felt like I was hit in the gut with a baseball bat, and I would walk hunched over for a few hours until it would pass.  This was an off and on thing for a few weeks - but each boutonly lasted a few hours.  I saw a surgeon and a gastroenteroligist, and neither of them really did much.  I had an endoscope, but aside from finding polyps in my stomach (not colon) and a very inflamed stomach, nothing.  Dr. prescribed Hycosomine, which I took and hated the side effects - for a few days as that is all I could tolerate.  I think it helped at the time (it was for stomach spasms) - but I just am not sure that is my real issue.  I do notice spasm-y type feelings, but it doesn't seem a cause of the issue so much as a side effect.

 

Now fast forward to about 3 weeks ago.  I had found out I had miscarried again - this is my 3 rd time - and ended up having a D&C, and kind of burying my grief in food.  Junk food. Fast food. yuck.  After a few beef sticks one day, I noticed my stomach was hurting.  I didn't pay much attention, and can't tell you what I ate after that, but the stomach pain progressed and became nearly unbearable. I ended up taking pain killers for 4 days because I couldn't move without being in signficant pain.  It felt like the pain was moving downward - albeit slowly, and moved gradually from my stomach area, down to a few inches above my belly button.  This is where the pain centered last year too.  The pain seems to settle right above the belly button and stay there.  no matter what - ti's ALWAYS tender there.  The tenderness is in varying degrees - can be just if you press on it, or have you doubled over in tears. 

 

 

All this said - i don't have diarrhea or constipation as a rule.  I had one day of diarrhea in 3 weeks, and maybe 2-3 of constipation but I think the latter was because I was eating NO fiber with the stomach pain because I didn't want to aggravate it.  

 

One of the 'attacks' or episodes hit the hardest, when I thought I was getting better, and was HUNGRY (after not eating much with the pain) - and sat down to 2 bowls of generic 'TRIX' cereal with almond milk.  about 30 to 60 minutes later, I was a mess.  Crying and doubled over, and my 5 year old went running crying to my husband, scared to death. 

 

So - researching my fool head off - I am beginning to think I have SIBO - and or possibly Celiac - but I don't have the Diarrhea or Constipation issues.  So I just don't know.  I also am not losing weight. 

 

I am frustrated with my GASTRO because he didn't test for either ofr these and I would think ith my symptoms he should have.  I also have noticed lately (though this is probably unrelated) that my fingers have been very itchy - especially after I have them in cold water.  That seems like mild allergy thing, but it must be food related as nothing soap wise has changed.    Anyone able to help at all with this?  Since I dont' have the diarrhea or constipation - am I way off base?mayb

 

Maybe it is food allergies causing it - I am just so lost :(

 

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After a third miscarriage, your OB should suggest the blood test for Celiac. 

 

Show the OB this list of the most common symptoms.  Not everyone has every symptom. 

 

http://www.cureceliacdisease.org/archives/faq/what-are-some-of-the-symptoms-of-celiac-disease

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First, I just wanted to say that I'm soooooo sorry to hear that you have had to go through all of this.

For years I had abdominal pain above and to either side of my belly button, my one symptom that persisted even after I went gluten free. Mine appears to have been caused by a B12 deficiency (easy to test for, easy to treat) and has gotten much better with supplements. Any levels below 400-500 can have symptoms despite that still being in the accepted normal range in the U.S.

When I was doing research into my pain, there were about 9-10 serious health issues that people had in relation to pain in this area. That list included things like Crohn's disease, diverticulitis, gallbladder disease, pancreatitis, appendicitis, hernias, ovarian cysts, vein issues, endometriosis, and more that I can't remember now, though none of them mentioned stomach polyps.

The bad news is that there are literally hundreds of people posting online about pain in this area who still have no idea what is causing it despite lots of testing, and even some unnecessary surgeries to remove things that aren't diseased.

Though it sounds as if you've already had a lot of testing done, getting a couple more blood tests to rule out a few more possible causes certainly can't hurt. 

Best of luck in finding some answers.


 

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First, I just wanted to say that I'm soooooo sorry to hear that you have had to go through all of this.

For years I had abdominal pain above and to either side of my belly button, my one symptom that persisted even after I went gluten free. Mine appears to have been caused by a B12 deficiency (easy to test for, easy to treat) and has gotten much better with supplements. Any levels below 400-500 can have symptoms despite that still being in the accepted normal range in the U.S.

When I was doing research into my pain, there were about 9-10 serious health issues that people had in relation to pain in this area. That list included things like Crohn's disease, diverticulitis, gallbladder disease, pancreatitis, appendicitis, hernias, ovarian cysts, vein issues, endometriosis, and more that I can't remember now, though none of them mentioned stomach polyps.

The bad news is that there are literally hundreds of people posting online about pain in this area who still have no idea what is causing it despite lots of testing, and even some unnecessary surgeries to remove things that aren't diseased.

Though it sounds as if you've already had a lot of testing done, getting a couple more blood tests to rule out a few more possible causes certainly can't hurt. 

Best of luck in finding some answers.

 

*****

thank you!!  the one thing i remember reading about the duodenum is the type of pain - which is that it comes in waves - I think that was with an ulcer,  That is exactly what happens when I have those attacks.  something about the duodenom releasing foods or foods being released into it. i researched that last year and had a strong suspicion thats what it was.  I still have that - along with Gas, and this the first time I came across SIBO - and I seem to have a large number of the symptoms - and possibly Celiac too but I need to find out.  I am so angry my doctor never tested for this.  Or even suggested it.  One endoscopy and I think he was looking for ulcers, but - I am not sure he even checked the duodenum, so what was the point?  I was under, why not go the extra step and look there?  Now I have to potentially face another procedure becuase he didn't do that - and it makes me mad.  I am sure it won't be cheap, and .. UGH.  why not just check for that stuff while the patient is already on the table.

 

My personal opinion is that the Dr is overbooked and therefore just kind of whips through his patients.  Case in point - it took like 2 weeks ore more if I remember correctly - to even get the results of my endoscope.  ANd when I called on Monday to ask if I had been tested for Celiac or SIBO - or if he DOES those tests, he was out of the office, and I called Tuesday - he hadn't seen the message yet.  I called FRIDAY and still no update (REALLY?)  They called me back late friday to say he doesn't test for those two things.  WHAT A WASTE!  :(

Edited by SearchingForAnswers
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*****

thank you!!  the one thing i remember reading about the duodenum is the type of pain - which is that it comes in waves - I think that was with an ulcer,  That is exactly what happens when I have those attacks.  something about the duodenom releasing foods or foods being released into it. i researched that last year and had a strong suspicion thats what it was.  I still have that - along with Gas, and this the first time I came across SIBO - and I seem to have a large number of the symptoms - and possibly Celiac too but I need to find out.  I am so angry my doctor never tested for this.  Or even suggested it.  One endoscopy and I think he was looking for ulcers, but - I am not sure he even checked the duodenum, so what was the point?  I was under, why not go the extra step and look there?  Now I have to potentially face another procedure becuase he didn't do that - and it makes me mad.  I am sure it won't be cheap, and .. UGH.  why not just check for that stuff while the patient is already on the table.

 

My personal opinion is that the Dr is overbooked and therefore just kind of whips through his patients.  Case in point - it took like 2 weeks ore more if I remember correctly - to even get the results of my endoscope.  ANd when I called on Monday to ask if I had been tested for Celiac or SIBO - or if he DOES those tests, he was out of the office, and I called Tuesday - he hadn't seen the message yet.  I called FRIDAY and still no update (REALLY?)  They called me back late friday to say he doesn't test for those two things.  WHAT A WASTE!  :(

Please find a new doc!  My first GI doc was actually a very nice man who took a lot of time with me.  He was looking for acid reflux issues, but took the time to look for autoimmune diseases (some general test that was elevated and then a specific test for lupus, which was negative).  He was actually LOOKING for other things, but didn't think to do a celiac test of any kind- even after thinking "autoimmune".  I eventually found my way to a younger GI doc who did a second endoscopy and actually checked for celiac. Voila.  I wouldn't have classified myself as being constipated or having D issues either.  Now I know what I thought was normal for me is actually abnormal.  

 

Regardless of all of the above- you shouldn't be waiting that long for test results or feel as though you're badgering your doc for information on YOUR body- something you're PAYING him to do for you.  Find someone else in your area that has some experience with celiac disease and/or SIBO. Do whatever you need to do to make it happen.  In my case, I had to be kind of a B. I don't regret it.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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