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How Many Of Your Gi Doctors Were Willing?


Guest Disturbed

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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

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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.

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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

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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...

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  • 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.

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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

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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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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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