Looking for celiac or other specialists

Bronwyn Hamilton, MD
There are no celiac specialists anywhere near me and/or who accept my insurance. What should I do? Who should I see? Further to this concern, how about if I need to see a specialist for gluten ataxia or neuropathy?

Answer


Lack of access to celiac specialists, or even getting in to see any gastroenterologist for an initial diagnosis can be difficult for many patients, especially if you live in a more rural area. You also point out another limitation in medicine, which is that specialists are “siloed” by organ system, which means that the gastroenterologist who may have diagnosed your celiac disease may not be familiar with neurological manifestations of celiac disease. Similarly, you may end up seeing a neurologist for ataxia who does not recognize that gluten sensitivity or celiac disease is the underlying problem. Research online or calling a particular clinic can be helpful to identify if there is a specialist with an interest in celiac disease or who is familiar with these neurological manifestations.

Gluten ataxia and/or neuropathy are recognized manifestations of celiac disease. However, these symptoms are not specific to celiac disease, and may be seen with other disorders and should be worked up by a physician if the cause is not clear1. Initial evaluation could be with a gastroenterologist to test for and provide surveillance for celiac disease if this is the suspected diagnosis.

However, if a patient does not know why they have ataxia and/or neuropathy, seeing a neurologist initially may be more appropriate since they can do a complete evaluation to decide what the cause is. If the cause is unclear, this is where it can be important to ask your physician the question, “Is it possible my symptoms are related to gluten (or celiac disease)?” – while at the same time offering evidence in support of the “why” from a reputable medical source (such as PubMed: pubmed.ncbi.nlm.nih.gov) as referenced here. Some physicians are less familiar with gluten as a possible etiology of neurological presentations like ataxia, neuropathy, and even uncommonly, seizures2,3. A gluten-free diet has been shown to improve ataxia and neuropathy (and seizures) due to celiac disease and non-celiac gluten sensitivity in some studies, however this has not been well studied, and more research is needed.

If specialists are not available near you, telehealth or travel may be better options. Educating yourself and asking for referrals you need, by providing evidence from a reputable medical source as mentioned above to your primary doctor can be helpful. If your doctor is not willing to listen and consider your concerns, then it may be time to find someone else.

Finally, another option for patients who can afford to pay out of pocket is to find a “functional medicine specialist” if you cannot get traction via conventional methods. Most of these physicians are generally willing to listen carefully to you and they have a “whole body systems” approach to treatment that doesn’t focus on one particular organ system. Many understand autoimmune disorders and gluten sensitivity and can offer appropriate testing and referrals as needed.

References:

  1. Mearns ES, Taylor A, Thomas Craig KJ, Puglielli S, Leffler DA, Sanders DS, Lebwohl B, Hadjivassiliou M. Neurological Manifestations of Neuropathy and Ataxia in Celiac Disease: A Systematic Review. Nutrients. 2019 Feb 12;11(2):380.
  2. Hadjivassiliou M., Rao D.G., Grìnewald R.A., Aeschlimann D.P., Sarrigiannis P.G., Hoggard N., Aeschlimann P., Mooney P.D., Sanders D.S. Neurological Dysfunction in Coeliac Disease and Non-Coeliac Gluten Sensitivity. J. Gastroenterol. 2016;111:561–567.
  3. Julian T, Hadjivassiliou M, Zis P. Gluten sensitivity and epilepsy: a systematic review. J Neurol. 2019 Jul;266(7):1557-1565.

Published January 8, 2024

Note: This information is provided by NCA and Bronwyn Hamilton, MD. This information is meant for educational purposes only and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. No liability is assumed by the NCA or Bronwyn Hamilton, MD by providing this information.

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