Refractory celiac disease

[Grahamsnaturalworld]

Where can I find a gastro in adelaide who can diagnose refractory celiac disease have seen 3 so far and don't understand the most obvious question, why my celiac symptoms did not resolve on a gluten free diet the symptoms just got worse as it is attacking my nervous system. 

[knitty kitty]

Welcome to the forum, @Grahamsnaturalworld

What exactly do you include in your diet?  Do you keep a food journal to track symptoms?

Have you tried an elimination diet like the Autoimmune Protocol Diet?  It's very strict, but I found it excellent for reducing inflammation, calming the immune system, and promoting healing in the gastrointestinal tract.  

The AIP diet was developed by a doctor who is a Celiac herself, Dr. Sarah Ballantyne, who wrote The Paleo Approach.  

Have you been checked for nutritional deficiencies?  Sometimes vitamin deficiencies can manifest as gastrointestinal problems.  Which symptoms do you have currently that make you think your refractory?  How long have you been on a gluten free diet?  When were you diagnosed?  

[Scott Adams]

It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to:

• The Royal Adelaide Hospital’s Gastroenterology Department (ask for clinicians affiliated with celiac research or autoimmune disorders).
• A university teaching hospital (e.g., specialists at the University of Adelaide’s medical network often handle refractory cases).
• Celiac Australia’s clinician directory (they may have vetted specialists familiar with RCD).

Since your symptoms are escalating, emphasize the neurological progression (e.g., neuropathy, ataxia) when booking appointments—this often flags urgency. You might also request repeat biopsies, TTG-IgA testing, and HLA-DQ2/DQ8 gene testing to rule out complications like RCD Type 2 or overlap conditions (e.g., gluten ataxia). If local options fall short, telehealth consults with celiac-focused centers in Melbourne or Sydney (e.g., The Alfred, RPAH) could provide second opinions. Keep advocating for yourself—you deserve answers.

We also have a ton of articles on refractory celiac disease here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

[Grahamsnaturalworld]

Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.

[knitty kitty]

@Grahamsnaturalworld,

It's never too late.  

Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system.

Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy.

Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms.

Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.  

Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects.

Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.  

Have your doctors checked for all these?  

I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday.

Interesting reading:

AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review

https://pubmed.ncbi.nlm.nih.gov/36137844/

[Jpate]

Has anyone had refractory celiac type 2 for very long I have had refractory celiac type 2 for 11 years now and consider myself lucky to be alive. 

 

[Scott Adams]

I just want to mention that we summarize the latest research on refractory celiac disease here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/