Do I need to continue seeing a gastroenterologist

[Mindy S]

I was diagnosed with celiac disease two months ago. I am following a gluten free diet to the best of my ability. I was wondering if I need to continue seeing a gastroenterologist periodically, or if most people with celiac disease turn their care over to their primary care physician?  It is so hard to get an appointment with a gastroenterologist in the city I live in.
 

Also, what tests will have to be added to my blood tests that my GP does twice a year?  
 

One last question, do most celiacs have a endoscopy done every time they have a colonoscopy?  If so, is a biopsy done with the endoscopy each time?

 

Thank you so much

[trents]

I assume that either your PC physician or your gastro doc ordered a celiac blood antibody test or test that was/were positive and prompted confirmation via the endoscopy/biopsy. Find out what test that was and have it ordered again by your PC doc. Do you have access to your medical records to find out what was ordered?

[Mindy S]

  On 2/22/2023 at 2:36 AM, trents said:

I assume that either your PC physician or your gastro doc ordered a celiac blood antibody test or test that was/were positive and prompted confirmation via the endoscopy/biopsy. Find out what test that was and have it ordered again by your PC doc. Do you have access to your medical records to find out what was ordered?

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Yes, I have had all the tests. I have HLADQ2, TRANSGLUTAMINASE 70, Endomysial Antibody Titie elevated, flattened villi.  I had all the blood work done twice before my biopsy, so no doubt it’s celiac disease. 
 

Basically, I’m wondering if I have to continue seeing a Gastroenterologist, or if most celiacs just have heir primary care doctor monitor them after getting a positive diagnosis?  If so, what tests should I make sure are being performed as I go forward and how often. Will I have to have any more biopsies or endoscopies?

 

Thanks so much for and information you can give me. 

[trents]

So, I'm not clear on which doc, the PCP or the gastroenterologist ordered the antibody tests. But since your Transgltaminase (tTG-IGA?) was strongly positive, it would seem to me that it would only be necessary to have that one done annually to check on your success in adhering to the gluten free diet. That number should be going down and eventually show negative if you are truly compliant with the diet.

Edited February 22, 2023 by trents

[Mindy S]

My Pc ran my first blood tests. He sent me to the Gastroenterologist.  The Gastroenterologist ran a some more tests just to confirm the celiac diagnosis. The Gastroenterologist did the endoscopy and biopsy. Now it is definitely confirmed as celiac disease. The Gastroenterologist put me on the gluten free diet. I have heard people talk about following up periodically by repeating blood tests to see how they are doing and some have said they have had endoscopies done to monitor their progress. I just wondered if most celiacs keep seeing a gastroenterologist throughout life or not

[trents]

So, it sounds like your PCP can order the tests you need. Whatever he/she ran in the first place that was positive and triggered the referral to the gastroenterologist should be sufficient to check progress. I would do that on a yearly basis.

I had follow up endoscopies twice within the first three years and the GI doc doing the scoping said there was still evidence of damage. I was not retired at the time and I'm sure I was getting some gluten on a semi regular basis from the workplace cafeteria. Almost 10 years later and after I was retired and had more control over gluten exposure, I asked for another scoping and the GI doc said the villi looked healed. I don't think he did a biopsy, however, just a visual assessment. I don't think I ever had repeat antibody blood work done but I don't think my path was typical. Just having antibody bloodwork repeated on a regular basis until the antibody score or scores drop out of positive should be sufficient in most cases. And a lot less expensive and less hassle.

[GF-Cate]

Hi Mindy,

This link details all the follow-up testing you should be having:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

 

 

[Mindy S]

  On 2/22/2023 at 11:25 AM, GF-Cate said:

Hi Mindy,

This link details all the follow-up testing you should be having:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

 

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Thank you!  That is so helpful!

[plumbago]

I'll try to answer one of the questions you asked which is, if I'm reading correctly, if you're getting a colonoscopy already, should you go ahead and get an endoscopy. Generally, people get a colo every 10 years. In my case, I did go ahead and get the endoscopy (and biopsies, IIRC) with the colo. You might as well, is my reasoning. It's a big deal to fast and purge, so why not do the endo too since, generally, it's only once every 10 years? Most gastroenterologists are not in charge of patients' Celiac. Would that they were, but they're not. And celiac disease barely registers with PCPs either.

[Mindy S]

Thank you. So good to know  

[RMJ]

At my last routine colonoscopy my gastroenterologist said there was no need to do an endoscopy. He orders my antibody tests, but I’m in a health system where the primary care docs seem to refer to specialists a lot.

[KennaH]

Mindy,

I was diagnosed with biopsy in December of 2022. I have IBS-C and hypothyroidism. I have been gluten free with 2-3 accidental gluten exposure. I feel like I am on a rollercoaster of good days and bad. I need FMLA for work. I reach out to gastroenterologist but I get no reply or a refill for nausea and cramping. I have a dietician that helps with nutrition.  I have the same question. Who do I contact for help? Do all gastroenterologists stop treating after diagnosis? I have diverticulosis which led to endoscopy. Thanks for your question and I am eagerly reading responses. 

[Wheatwacked]

  On 2/21/2023 at 11:41 PM, Mindy S said:

what tests will have to be added to my blood tests that my GP does twice a year?

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Vitamin D and Homocysteine. Vitamin D moderates the autoimmune system.  High homocystein can indicate deficiency in Choline for which there is no easy accurate test. 

Possible Role of Vitamin D in Celiac Disease Onset  "Vitamin D exerts effects on different aspects of immune functions, and it helps in promoting innate immunity by maintaining and improving defences against infection whilst, in parallel, regulating T-cells and dendritic cells (DCs) via a possible role in the mitigation of T-cell-mediated autoimmune disease ...In celiac disease, ingested gluten leads to an immune response characterized by an interplay between innate and adaptive response. ..The potentially positive role of vitamin D on DCs has recently been underlined, demonstrating a strong relation between suboptimal vitamin D level and the occurrence and progression of many autoimmune diseases" 

Homocysteine metabolism

 

Common Nutrient Deficiencies in People with Newly Diagnosed/Untreated Celiac Disease

[trents]

  On 3/9/2023 at 11:45 PM, KennaH said:

Mindy,

I was diagnosed with biopsy in December of 2022. I have IBS-C and hypothyroidism. I have been gluten free with 2-3 accidental gluten exposure. I feel like I am on a rollercoaster of good days and bad. I need FMLA for work. I reach out to gastroenterologist but I get no reply or a refill for nausea and cramping. I have a dietician that helps with nutrition.  I have the same question. Who do I contact for help? Do all gastroenterologists stop treating after diagnosis? I have diverticulosis which led to endoscopy. Thanks for your question and I am eagerly reading responses. 

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Kenna, perhaps your GP could make another referral to a GI doc for you to address these symptoms you describe. Or, perhaps the GP could write a prescription for the meds you need.

[KennaH]

  On 3/10/2023 at 5:01 AM, trents said:

Kenna, perhaps your GP could make another referral to a GI doc for you to address these symptoms you describe. Or, perhaps the GP could write a prescription for the meds you need.

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Thank you. I appreciate feedback on what GI can/will address.