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How Many Of Your Gi Doctors Were Willing?


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celiac3270 Collaborator

My regular doctor thought that I had "cyclic vomiting", something that's related to migraines (and there's a history of migraines in my family). However, he still recommended that I see a GI doctor to be sure it wasn't something else....wow, I am glad that I listened to him.

The GI ran bloodtests to check for allergies and a variety of other things. I also had a sonogram thingy done and a bone density test. Bloodtests showed that I had celiac disease, but no allergies. My bone density test showed that my bones weren't as "mature" or something as they should've been -- 1-2 yrs. behind, I think. He did the biopsy to be sure...and said that I had celiac disease....so he found it really well.

He was terriffic in finding it, but I think that now he isn't that helpful....I'm going back to him for "check-ups" on the celiac disease.....but he seems to think that I am saying that everything is because of celiac disease....he thinks that symptoms like diarrhea, cramping, vomiting, etc. are not related to celiac disease and it annoys me since I know that it is -- symptoms don't always, and don't usually, leave in under 5 months :angry: ! He thinks that I'm just attributing everything to Celiac.... <_<

Helpful to diagnose, but not to cope.....

-celiac3270


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dana-g Newbie

xx

dana-g Newbie

celiac3270, are you supposed to have a second biopsy to check on your gluten-free progress? My daughter, who is 11, is supposed to have another one 6-8 months after being gluten-free. I know you've still been having problems on occasion, and that you aren't allergic to anything, and that you are meticulous about not ingesting gluten. Just wondering what your thoughts are on this.

celiac3270 Collaborator

I've been....about 5 months, I guess and the doc. hasn't talked of another biopsy...I've heard of that, but I think that my doctor's going to stick with monitoring it by blood test....

I've heard of that, so I think it's just a matter of what the individual and their doctor feel is right. Some doctors might feel it necessary to do a biopsy, but mine, I think, feels that monitoring it with blood is suitable...for now, anyway

-celiac3270

dana-g Newbie

Oh, well that's good that you and your doctor have it worked out. I know my daughter had a fair amount of damage--NO symptoms--and this doc routinely runs a second biopsy. She sailed through the first one, so we're not concerned about the second...I never thought I'd hear myself say THAT! I enjoy your posts--you know so much I have to remind myself you're a kid! Actually, I think you're a grownup trapped in a kid's body...

  • 2 weeks later...
Shamrock Newbie

All these stories are kind of scary. I went to my internist who seems to dismiss my feelings that I might have celiac. However did write me a referral to a GI but wrote on it "Colitis". I have done some research and although there is some similiarities in symptoms I did tell him I have a brother with Celiac and my syptoms seem somewhat textbook for Celiac not Colitis- I am in an HMO so I am hoping for the best when I go to GI- I was gluten-free for about 5 weeks and then went back after finding that I had to be on gluten to be tested- sure enough I have been feeling sick ever since- August 5(my appt date) can't come soon enough for me.

snoopini Newbie

My doctor actually lied to me and told me he took "several" biopsies during my endo.....he actually only took one! I'd like to find somebody who specializes in celiac or one who is more inclined to accept it!!


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dianne Rookie

I just saw a new GI because I wasn't happy with the one I had. The first GI never did an endoscopy, or a biopsy. GI number two says that the blood test that the first one did was such a poor test that htey don't even use it anymore. So, he's not sure that I have Celiac's. In my first office visit, he was gave me a more thorough exam than number one ever did. He's going to try me on a slice of toast in the morning, prior to an endoscopy four weeks from now. It's such a pleasure to have a GI who communicates with me, and seems to know what to look for, and cares about me! I wasn't familiar enough with celiac disease prior to being diagnosed, to know what tests to ask for. I don't even know what blood tests I had. Even after my diagnosis (which I had to call the doctor to get), he didn't discuss the condition with me, other than to refer me to a dietician. I'm so glad my PCP referred me to this doctor! This group of gastroenterologists seem to be very familiar with celiac disease. Even before I was referred to them, I found them on the Internet. through a celiac-related website. :D

crc0622 Apprentice

I, too, saw a doctor of middle-eastern descent and was diagnosed on my second visit -- he scheduled the edoscopy right away and I had a diagnosis within 2 weeks. Yes, I am lucky and thankful, too.

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    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
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      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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