Should I get a different gi doctor?

[need7]

Just had my first followup after diagnosis (or rather bloodwork) for celiac disease and my doctor seemed rather dismissive of my concerns. I asked about the autoimmune aspect and if I need to do additional followup since according to data a diagnoses at my age is a 33% chance of a concurrent autoimmune issue.  To which the response was (well we dont really do that and only focus on it if you have symptoms). She also seemed a bit unconcerned with cross contamination and when I brought up how most restaurants have "we cannot recommend this for people with celiac disease as we used a shared kitchen" she pretty much said all of them have to say that legally but supposedly its been getting better and to not focus so much on the cross contamination and just focus on the removing gluten from my diet. Both of these and the way she went about it seem to me like she doesnt really understand the disease all too because based on the research I didO(which I basically got none from them after the diagnosis) those are serious concerns. I could also understand if im wrong about something but it seemed like they just didnt care or didnt know enough in general. Should I look for a new gastroenterologist? their only plan they ahd for me was to do bloodwork and check for any nutrient deficiencies in about 6 weeks. For anyone with mroe experience does that sound right or should I really look elsewhere?

[knitty kitty]

Welcome to the forum!

Unfortunately, doctors are not as knowledgeable about Celiac Disease as we would like.  But your doctor is going to check for nutritional deficiencies, which is a point in her favor.  You might request a referral to a nutritionist.

Their dismissive attitude can be because they don't have a clue what it's really like to experience celiac disease.  But we do here, so we'll be glad to answer any questions.

[trents]

Welcome to the forum, need7!

It is unfortunate that your GI doc projects this attitude but the fact is this is the norm. There is just a lot of ignorance in the medical community regarding celiac disease and the chances of finding another doc who is more in tune with your celiac disease may not be that good.

It would probably be a more fruitful approach to educate yourself and just be your own advocate. You don't need the GI doc to confirm your safety strategy as a celiac. Just do what you need to do. The doc isn't there at the restaurant with you anyway when you eat out. At least your current doc is willing to do follow-up testing which is really all you need.

Also, be aware that nutrient level serum testing has limitations in that it can't really measure how well the nutrients are getting into the cells. Nutrient deficiency symptoms may be a more reliable indicator of deficiencies. We routinely recommend taking the following gluten-free supplements: B-complex, B12, D3, and magnesium (citrate or gycinate forms since they are best assimilated). Nutrient deficiency is almost a given with celiac disease as it usually takes years to get diagnosed after onset.

 

[need7]

  On 11/19/2022 at 5:35 PM, trents said:

Welcome to the forum, need7!

It is unfortunate that your GI doc projects this attitude but the fact is this is the norm. There is just a lot of ignorance in the medical community regarding celiac disease and the chances of finding another doc who is more in tune with your celiac disease may not be that good.

It would probably be a more fruitful approach to educate yourself and just be your own advocate. You don't need the GI doc to confirm your safety strategy as a celiac. Just do what you need to do. The doc isn't there at the restaurant with you anyway when you eat out. At least your current doc is willing to do follow-up testing which is really all you need.

Also, be aware that nutrient level serum testing has limitations in that it can't really measure how well the nutrients are getting into the cells. Nutrient deficiency symptoms may be a more reliable indicator of deficiencies. We routinely recommend taking the following gluten-free supplements: B-complex, B12, D3, and magnesium (citrate or gycinate forms since they are best assimilated). Nutrient deficiency is almost a given with celiac disease as it usually takes years to get diagnosed after onset.

 

Expand Quote  

Thanks for the followup and advice. I am looking into my options for supplements and I sadly wasnt able to really get a understanding of how damaged my villi was or what marsh score as there wasnt much communication about that when asked only that "it looked normal during the procedure, but the biopsy itself was suggestive of celiac" whatever that exactly means the gi  I spoke to believes it might have been caught early. I just am trying to make the best decisions possible and gather what information I can really. ill be sure to make note of those supplements and see what my options are for getting them thank you again!

[need7]

  On 11/19/2022 at 5:32 PM, knitty kitty said:

Welcome to the forum!

Unfortunately, doctors are not as knowledgeable about Celiac Disease as we would like.  But your doctor is going to check for nutritional deficiencies, which is a point in her favor.  You might request a referral to a nutritionist.

Their dismissive attitude can be because they don't have a clue what it's really like to experience celiac disease.  But we do here, so we'll be glad to answer any questions.

Expand Quote  

Thanks for the response I havent really been to a gastroenterologist before but was just very disturbed by the lack of awareness about it so I figured it would be better safe then sorry to ask. It was very jarring to see my doctor offer rather conflicting advice to what I had seen when I did my own research on very reputable sites. 

[plumbago]

  On 11/19/2022 at 6:01 PM, need7 said:

wasnt able to really get a understanding of how damaged my villi was or what marsh score as there wasnt much communication about that when asked only that "it looked normal during the procedure, but the biopsy itself was suggestive of celiac" whatever that exactly means

Expand Quote  

Ok, so you've had an EGD and biopsy. You have every right to look at the pathologist's report - indeed that should have been handed to you, along with pictures. This is, in my experience, across the board standard. Get that report. It's yours.

[need7]

  On 11/20/2022 at 12:58 AM, plumbago said:

Ok, so you've had an EGD and biopsy. You have every right to look at the pathologist's report - indeed that should have been handed to you, along with pictures. This is, in my experience, across the board standard. Get that report. It's yours.

Expand Quote  

I do actually have that report but my diagnosis wasnt what I was getting a EGD for so I believe that might be why its lacking that information. The most I have is villous blunting/partial atrophy is what is said. which isnt severe but the classification of differences is a bit complicated in terms of finding out the extent of the damage to my villi, but after a bit more checking and looking it seems that does give me the answer I was looking for just not as easily as I was hoping. Thank you for clarifying that so I am able to figure that out for myself I appreciate it!