Is A Gi That Specializes In Celiac Necessary If Not Seeking Diagnosis?

[CaliSparrow]

Is seeing a Celiac GI specialist important if I'm not seeking diagnosis? My current doctor has recommended me to a new GI doc. I told her I didn't want a doctor who wasn't up on Celiac and she told me he was a good doctor.

Nine years ago, I had an adenoma polyp removed and that GI doctor was "blown away" that I had that at my age. The only reason I had the colonoscopy is because of the undetermined 2-month stomach illness after returning from Mexico. Three years later (six years ago), I had another one and I got the all clear - no colonoscopy for another five years.

I'm a year late getting my third colonoscopy and know I need to get in there. I have not been diagnosed with Celiac and do not know if there is anything a Celiac specialist would look for outside the bounds of an ordinary GI doctor.

If I hadn't have been down so many paths with doctors who missed things, I wouldn't be concerned. I know a colonoscopy can't determine Celiac and that's not why I'm going (I've tried but I cannot complete the gluten challenge). I just don't want to go to someone who doesn't have keen knowledge on what to look for if there WAS something a person with Celiac might be more predisposed to having/developing. I don't want to screw up on this but I haven't read anything that would indicate a specialist is warranted.

[kareng]

Is seeing a Celiac GI specialist important if I'm not seeking diagnosis? My current doctor has recommended me to a new GI doc. I told her I didn't want a doctor who wasn't up on Celiac and she told me he was a good doctor.

Nine years ago, I had an adenoma polyp removed and that GI doctor was "blown away" that I had that at my age. The only reason I had the colonoscopy is because of the undetermined 2-month stomach illness after returning from Mexico. Three years later (six years ago), I had another one and I got the all clear - no colonoscopy for another five years.

I'm a year late getting my third colonoscopy and know I need to get in there. I have not been diagnosed with Celiac and do not know if there is anything a Celiac specialist would look for outside the bounds of an ordinary GI doctor.

If I hadn't have been down so many paths with doctors who missed things, I wouldn't be concerned. I know a colonoscopy can't determine Celiac and that's not why I'm going (I've tried but I cannot complete the gluten challenge). I just don't want to go to someone who doesn't have keen knowledge on what to look for if there WAS something a person with Celiac might be more predisposed to having/developing. I don't want to screw up on this but I haven't read anything that would indicate a specialist is warranted.

 

 

I don't know why someone without Celiac would need a Celiac specialist to get a colonoscopy for polyps.  Even a Celiac doesn't need a Celiac specialist to get a colonoscopy to check for cancerous colon polyps.

[CaliSparrow]

I don't know why someone without Celiac would need a Celiac specialist to get a colonoscopy for polyps. Even a Celiac doesn't need a Celiac specialist to get a colonoscopy to check for cancerous colon polyps.

I guess what I'm saying is, I don't know what I don't know and have doctor anxiety because of my experiences the last ten years. Nurses told me to get tested for Celiac but I trusted the doctor knew what he was doing and never brought it up. The doctor I had did an endoscopy in '08 (+ lots of other tests) and only checked for H. Pylori. Now I could kick myself for not having had some discussion with him. He asked me if I ever lost weight with no explanation (and I ALWAYS have an explanation because I'm literal). That was the extent of Celiac testing. I answered one question wrong and that was that even though I took him pictures of me in childhood looking emaciated while sitting in front of him weighing 95 lbs. Then I spent years spending my limited energy in doctor's offices and having labs drawn frightened of what I didn't know. Still, never one test to check for Celiac. My husband ended up my caregiver for years and I don't want him to go through that again if I can help it.

I know a GI doctor is trained to check for polyps. What I don't know is if there would be anything a Celiac specialist would look for outside of that scope.

I am nervous about doctors. My mom is on hospice (dying of Parkinson's that was misdiagnosed as Alzheimer's) and I am sensitive right now about just living beyond her. I have gone from blind faith to zero faith. Neither of those positions are healthy views but here I am. It is what it is. I just want to feel safe in knowing I don't have to KNOW anything in particular and can just let the new doctor do his job.

If all GIs are equal in the realm of colonoscopies, that's the answer I'm looking for.

[kareng]

There is no need to get any follow up for celiac except blood tests. If blood tests remain positive, they might want to re- endoscopy. A colonoscopy has nothing to do with Celiac.

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[CaliSparrow]

Thank you.

[cyclinglady]

Cali,

When was the last time your ferritin was checked? If you have been gluten and dairy free for over a year, you should have seen improvement in your ferritin level ( maybe help with a celiac disease diagnosis too). If it was recent, then I would push for an endo and a colonoscopy to determine the inability to store iron or have your blood work checked even if the GI was not a celiac expert. You might have a genetic anemia like me.

Maybe a new GI can find other issues that will resolve your problems. My GI is prey clueless about celiac disease . I honestly think he had either just attended a conference or read an article about celiac disease when I arrived on his doorstep. He just gave me a list of gluten-free restaurants. I am not even going back for blood work (it has been a year) as I know I am in good compliance having lived with a gluten-free eater for 13 years. Plus, my blood test was barely positive for celiac disease despite my moderate to severe intestinal damage. I can tell that I am improving since my anemia has resolved.

Sorry to hear about your mom.

[CaliSparrow]

Hey Lady,

That's good to hear that your anemia has resolved! Do you take iron supplements?

My hemoglobin was 7.9 and Ferritin was 1 when it was first discovered in '09. I had 10 iron infusions and the Ferritin bounced up to 150 before plummeting back down. After three years, my hematologist said I was one of two patients he didn't know WTH was going on. I'd imagine that I would have been tested for the genetic stuff but do not know. I have my notebook of tests for the years we were working to square that piece away. I was put on Rx oral iron and that helped. When I was taken off for five weeks, my hemoglobin went from 12.2 to 11.3 which is a really fast drop.

The last test I took with my new doctor was July '13. It was eight months since going gluten-free and my Ferritin was 7 (I think it dropped a little bit). However, my hemoglobin was something like 12.3. My new doctor (haven't seen hematologist since going gluten-free) said that was strange and that my body must be using all the iron stores to build up my hemoglobin (don't quote me on that - I was still very sick and the appointment was over an hour long). Typically, there has been a positive correlation between Ferritin level and hemoglobin. This time the Ferritin went down and my hemoglobin either stayed the same or increased.

I think I have an appointment set for next month and she will probably run everything again. I will be 18 months gluten-free. My vitamin D (10) and B6 were low too and I've been taking supplements. *edited: actually, the lab req is in my car. My phone will tell me when to go! I completely forgot!

She asked me if I'd seen my hematologist lately and I told her no. He was my best doctor of the team but just kept scratching his head and getting irritated at my GI doc. I don't know if I still need to see him.

Thank you for the condolences. I realized I was panicking today and focused here. I lost five lbs in a few days and am afraid I'll start circling the drain. It goes hand in hand with my mom. I am eating but just stressed a lot. If I wait a few more months for the colonoscopy (instead of sticking with the May deadline) the few extra months aren't going to matter if something of concern is there. It would add stress if I kept to that schedule with what is on my plate right now. I need to just take . it . easy and b-r-e-a-t-h-e.

Thank you for your suggestions. I feel like a babe in the woods at the doctor's office. If I don't feel well, I'm useless and if I am feeling better that particular day, I'm crazy happy about it. My doctor said to enjoy it when the figurative rays of sun stream from the clouds in my life and to notice, there are no rays without clouds so enjoy them as they are, take them in. They appear sporatically and don't take it as a sign of spontaneous healing and then over do it (typical me). One day the clouds will part and I'll have sunshine once again. I love that analogy and had forgotten it until now.

What kind of bloodwork would I ask the GI to run?

Cali,

When was the last time your ferritin was checked? If you have been gluten and dairy free for over a year, you should have seen improvement in your ferritin level ( maybe help with a celiac disease diagnosis too). If it was recent, then I would push for an endo and a colonoscopy to determine the inability to store iron or have your blood work checked even if the GI was not a celiac expert. You might have a genetic anemia like me.

Maybe a new GI can find other issues that will resolve your problems. My GI is prey clueless about celiac disease . I honestly think he had either just attended a conference or read an article about celiac disease when I arrived on his doorstep. He just gave me a list of gluten-free restaurants. I am not even going back for blood work (it has been a year) as I know I am in good compliance having lived with a gluten-free eater for 13 years. Plus, my blood test was barely positive for celiac disease despite my moderate to severe intestinal damage. I can tell that I am improving since my anemia has resolved.

Sorry to hear about your mom.

[surviormom]

I feel for you. I just went to the doctor yesterday and came home and cried. It is so frustrating, I had my husband go with me, I thought he could be strong and put his foot down and not let me be bulldozed. NO, he just wants me well, so he listened to the doctor, more testing for me, and lectures on taking the prilosec. I cannot find a good doctor. Still trying. I plan to go to a local meeting next month and ask for recommendations. They only meet every other month I only just discovered them in February, and was unable to make the March meeting.

Just came home and cried it was as useful as the doctor was.

[cyclinglady]

I did take iron supplements for about five months. Not taking them any longer. My last labs were all in the normal range. Standard blood work should identify any discrepancies, but I do not know that much about anemia. I would think you should be on iron until your ferritin levels improve. Obviously something else is still not right in your intestinal tract.

[CaliSparrow]

I feel for you. I just went to the doctor yesterday and came home and cried. It is so frustrating, I had my husband go with me, I thought he could be strong and put his foot down and not let me be bulldozed. NO, he just wants me well, so he listened to the doctor, more testing for me, and lectures on taking the prilosec. I cannot find a good doctor. Still trying. I plan to go to a local meeting next month and ask for recommendations. They only meet every other month I only just discovered them in February, and was unable to make the March meeting.Just came home and cried it was as useful as the doctor was.

I know what that's like. It's the pits! I finally found a doctor who is helping me but adding more to the list just brings up some bad memories. It's white coat fear. It would be nice to be in the future: Step into a room, get scanned and receive a recommendation on how to proceed. That'll have to go in my science fiction novel. I'm not against all doctors but have had some who didn't know what they were doing and took actions that were harmful. Now, instead of being steadfast, I just don't want to court trouble. Now I understand why my dad stopped going. It wasn't the right thing to do but I understand why he did it.

I hope the group will be of benefit to you and that you find it resourceful. I would love to find a group in Orange County but the one that was here seems to be dismantled.

[CaliSparrow]

I did take iron supplements for about five months. Not taking them any longer. My last labs were all in the normal range. Standard blood work should identify any discrepancies, but I do not know that much about anemia. I would think you should be on iron until your ferritin levels improve. Obviously something else is still not right in your intestinal tract.

My doctor told me it's going to take time. A few of the out of whack issues will take a year which I'm halfway through. The gut part, I'm not sure but now after having been on this site for a while, it looks like it's just going to take time. Someone here wrote about how her doctor told her her bowels were like post-war Berlin. I was in bad shape when I gave up gluten and my immune system was very compromised. I guess I believed everything would be better in a few days and I'd skip happily into the sunset (that's silly to expect spontaneous healing but will chalk it up to gluten brain). I am healing, I just have to look backwards in order to recognize it.

[FruitEnthusiast]

Hey CS

 

Don't know if you were still looking for an answer to your original question about a GI. I just wanted to add that as far as I know, it's the small intestine that gets damaged with Celiac, but it's the large intestine that's checked with a colonoscopy, so it shouldn't matter if the GI knows about Celiac or not. Of course it would be nice to find a GI who does know about Celiac so they could be helpful in other ways.

 

I checked out the cost for the Celiac GI's at UCLA and without insurance the cost is way out of my price range, but there was someone I could have seen in a weeks time if you have insurance. I know you don't want to do the gluten challenge as I don't, and given that I'm not sure what they would do for you. I agree it is really hard to try to figure this stuff out with brain fog. Some days I can't think clearly at all.

 

Hope your mom is doing ok. I can really relate to what you said about living beyond her. My mom is in good health but since I am not, and don't know where my health issues will lead, my life goal is that I live beyond her. It's my number one fear and what matters to me more than anything else. I just always want to be there for her as long as she needs me, so I sure can understand how you feel.

[CaliSparrow]

Hey CS

 

Don't know if you were still looking for an answer to your original question about a GI. I just wanted to add that as far as I know, it's the small intestine that gets damaged with Celiac, but it's the large intestine that's checked with a colonoscopy, so it shouldn't matter if the GI knows about Celiac or not. Of course it would be nice to find a GI who does know about Celiac so they could be helpful in other ways.

 

I checked out the cost for the Celiac GI's at UCLA and without insurance the cost is way out of my price range, but there was someone I could have seen in a weeks time if you have insurance. I know you don't want to do the gluten challenge as I don't, and given that I'm not sure what they would do for you. I agree it is really hard to try to figure this stuff out with brain fog. Some days I can't think clearly at all.

 

Hope your mom is doing ok. I can really relate to what you said about living beyond her. My mom is in good health but since I am not, and don't know where my health issues will lead, my life goal is that I live beyond her. It's my number one fear and what matters to me more than anything else. I just always want to be there for her as long as she needs me, so I sure can understand how you feel.

Thank you FE

You said it all so well and you have no idea how much it helped to read this this morning.

[FruitEnthusiast]

Awwww, I'm glad I could help.

 

My life feels to me like a big juggling act, between what to eat, which supplements to take, researching to answer my questions, just knowing what the heck to do next, and trying to have the energy to prioritize. I wish there was someone I could go to (a Dr) who could help, but there just isn't, not yet anyway.

 

Then I have to shop, cook, and try to get decent sleep. Every day at some point I'm overwhelmed and exhausted. I just wish I could have a break from all of it for one day even. It never stops. 

 

I learn more on this site than anywhere else. It's a lifesaver for me. I don't know what I'd do with out it.  (((hugs)))

[cahill]

 

 

I learn more on this site than anywhere else. It's a lifesaver for me. I don't know what I'd do with out it.  (((hugs)))

Yeap !!

I can honestly say with out this forum and the information here I would have never gotten my diagnosis  or well . It has been truly a life saver for me and many other.

Mushroom ( miss her ♥  ) and Ravenwoodglass were the first to welcome me here ,, I will never forget them I am thankful daily for their advice ( and their patience with me )

[FruitEnthusiast]

Sorry they are not still visiting the site, but still a lot of great folks here to help... (((hugs))) to you too.

[surviormom]

Awwww, I'm glad I could help.

 

My life feels to me like a big juggling act, between what to eat, which supplements to take, researching to answer my questions, just knowing what the heck to do next, and trying to have the energy to prioritize. I wish there was someone I could go to (a Dr) who could help, but there just isn't, not yet anyway.

 

Then I have to shop, cook, and try to get decent sleep. Every day at some point I'm overwhelmed and exhausted. I just wish I could have a break from all of it for one day even. It never stops. 

 

I learn more on this site than anywhere else. It's a lifesaver for me. I don't know what I'd do with out it.  (((hugs)))

Agree.  Thank you everyone.