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Saw Gi Today, "i Think It's Just Ibs" Grrrr
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Horrible day for symptoms too...blood this am with bm. Ate a turkey sandwich on a wheat deli thin before appt and I don't know why had such horrible bloating and cramping while there, driving home felt I need to puke too...got home nothing but flem when I tried to puke, and even more blood and clotting with bm (I have fissure and hemmoriods, but there was no pain associated with the bleeding like usually with the fissure). I curled up in a ball and went to bed at 6 pm. I can't function like that, I'm taking an online class and at this point going to withdrawal since I'm usually sleeping when not working. 

 

BUT....oh yeah Dr. GI initial thought is it's "just" IBS. He asked a few questions, felt my abdomen...then said "be right back"...came back into exam room with samples of a medication. I don't even know the name right now, I'm too pissed off to open the bag again. I'm not taking it until I see the blood results. Oh yes, on the positive side he agreed to at least do the Celiac testing. He ordered blood work, I don't know what all he ordered, I asked the lab woman and she said CBC was on of them, and the 4th vial she didn't know what it was exactly but it was going to be sent to the Mayo Clinic, so tell me 4 vials of blood, only 1 being sent away...think they do the full Celiac panel from one tube? I can check the results myself online in a few days....that is GREAT! He said since I had a colonoscopy in 2009 that was normal, no need to repeat it...thank you. I asked about an endoscopy, he said he'd be willing to do one and take a biopsy, let's see what the blood work results are....oh and he thinks seeing a dermatologist for the "skin issue" is a good idea. 

 

He doesn't advise anyone to go on a Gluten free diet unless it's necessary since it's "such a restrictive diet"...us um doctor but if it STOPS all these symptoms by simply excluding a food...it's a good thing! Tonight I threw together a chicken sausage, spinach, onion, mushroom, quinoa dinner....yes I know processed sausage not the best but it is Adele's which claims to be gluten free...thank goodness I can cook...I think I can adjust to Gluten free quite well just waiting for all the test so I can give it try.

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One of my kids Celiac panel was 1 vial sent to Mayo. So hopefully.....

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One of my kids Celiac panel was 1 vial sent to Mayo. So hopefully.....

Thank you! I didn't want to make him mad by pulling out my list and asking that he make sure all were done, he already wasn't completely on board...and I know my PCP in FL (next time I see her, I live in Ohio now) would order anything he did not order.

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Hopefully you get the answers you are looking for! Dr's can be great but they can also be very frustrating. Mine didn't even consider celiac the first time I mentioned it (over 2 years ago) but gave me the blood requisition anyways (which I didn't do) and then the fill in doc that I went to said to me "that doesnt really look like just atopical dermatitis..." on my severely blistered legs but had nothing to add other than, if the cortisone cream (stronger one than I was on) doesnt work, come back. (also ordered a celiac test) By the time I came back, I had researched DH and was ready with the info to be tested. Unfortunately she did it completely wrong so it will likely come back negative. 

I hope you hear very soon! 

 

 

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Initial blood results back CBC, CMP, and SED rate...the CBC and CMP look normal to me...SED rate which measures inflammation normal is 0-20...mine is a 65.

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Most people who have never followed a gluten-free diet think it restrictive and that statement comes out of ignorance.  It is not a restrictive diet.  I am eating more variety of foods that I never knew existed before.  Ask anyone if they have ever heard of quinoa or teff flour before.  The only thing that is restrictive with the gluten-free diet is that you cannot have too much processed food or fast food......we all know people need more of that!  :rolleyes:   I really hate GI doctors and refuse to ever go to one.  My functional medicine doctor was the one who agreed to run the Celiac blood panel and lo and behold, I had my answer!

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I know, I'm like hello FUNYUNS are gluten free...I'm GOOD. LOL Joking...sorta. I already eat a lot of unproccessed food, I was eating MORE "whole grain fiber" foods to HELP with the supposed IBS from the last GI who brushed me off...now this one is saying IBS without even having the other's records or any test yet...so you get IBS from pushing on my abdomen? Well...a lot of post weight lose surgery patients have constipation...um that's NOT what I have, I have a combination...I actually have 2-3 BM a day....trust me I'm active in the WLS community and see others talk about going DAYS with no bm....that is not what I have going on here....not to mention the rash, etc, etc, etc, etc. 

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That's a sucky answer to get! Very frustrating as well. If you are considering the biopsy, you'll need to stay on gluten, just going to put that out there. I'm two and a half weeks away from my biopsy and I had to go back on gluten after 3 weeks off and I'm about ready to call in sick for the semester. Going back on is a lot harder than staying on. 

 

And here I am with the unpopular opinion... perhaps you could have IBS and Celiac? I don't know how common it is but I had an IBS diagnosis in 2010, but with the symptoms I can identify now that I have that under control and am back on gluten, I think the celiacs just started within the past year or two when I know the IBS started in 2006. I have a completely separate reaction to foods that are high in sodium, have caffeine, have lots of super processed corn, among other things than I do to eating gluten. Unfortunately, that doesn't work with your doctor's excuse that eating gluten free is so restrictive... Have you seen how much caffeine normal college students consume? :P  I'm not saying that your self diagnosis of celiacs is wrong, but there could be other things happening as well that need attention too, like other food intolerances. 

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Oh yes, I've been a college student and I used to work at a university in Student Affairs....caffeine is a best friend. I am going to get the GI records from 2009 just to see what blood tests were actually done and what the results were...just curious. The IBS dx was basically in 2009 was basically because the Celiac and Chrohns were negative. If what the rash I have is DH then I've had it waaay before 2009. I do plan on staying on gluten until after an endoscopy per what I read here and definitely do not want to go off then back on. I noticed the IBS meds the GI just gave me is different name than the meds the NP prescribed (I never picked up), not taking either IBS meds until I see the latest blood results. Glad the hospital I went to has online chart so I can access them myself. Oh I don't doubt I have LOTS of issues...this would just another of the "odd" health issues I have...or the solution to many of the "odd" issues. I need to put them in signature here...is there a space limit??? LOL

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with electronic med recs, he could have seen the old recs.  which kinda defeats the "2' opinion" visit.

I know, I'm like hello FUNYUNS are gluten free...I'm GOOD. LOL Joking...sorta. I already eat a lot of unproccessed food, I was eating MORE "whole grain fiber" foods to HELP with the supposed IBS from the last GI who brushed me off...now this one is saying IBS without even having the other's records or any test yet...so you get IBS from pushing on my abdomen? Well...a lot of post weight lose surgery patients have constipation...um that's NOT what I have, I have a combination...I actually have 2-3 BM a day....trust me I'm active in the WLS community and see others talk about going DAYS with no bm....that is not what I have going on here....not to mention the rash, etc, etc, etc, etc. 

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The GI I saw in 2009 was in Miami, FL, this new doctor was in KY as I have moved back to Ohio...they didn't even have the 2009 GI name nor a release from me to get the records. I offered the name and phone at check in but the receptionist said they get it from me if the Dr wanted them...

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IBS is a symptom not a diagnosis. IBS is a part of celiac.

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My thoughts exactly...I've also read a few places on IBS forums that IBS would not cause the elevated SED rate....

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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