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

Saw Gi Today, "i Think It's Just Ibs" Grrrr

SeekingSarah

Recommended Posts

SeekingSarah Apprentice
SeekingSarah
Posted

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.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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.

mamat78 Apprentice
mamat78
Posted

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! 

 

 

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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.

Gemini Experienced
Gemini
Posted

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!

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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. 

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

Celiac.com Sponsor (A8-M):


EmiPark210 Contributor
EmiPark210
Posted

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. 

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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

frieze Community Regular
frieze
Posted

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. 

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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...

shadowicewolf Proficient
shadowicewolf
Posted

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

SeekingSarah Apprentice
SeekingSarah
Posted
  • Author

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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    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

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.