Refractory celiac

When did you start going gluten free? Healing Celiac can take a long time.... Years for some people, especially if you are an adult who has been diagnosed. Eating very healthily and avoiding all processed food (anything with more than one ingredient) can be helpful. Keeping a food/symptom journal can also be helpful to see if you are reacting to other foods. My eight year old daughter experiences rashes because of Celiac. My symptoms have mostly been neurological (paralysis episodes and muscle pain/stiffness that kept me in a wheel chair (mostly except for around my own home) for almost two years).

After a year and a half of being gluten free with my symptoms worsening and my doctors not knowing what to do, I finally simplified my diet... I gave up anything processed (sugar and processed oils wreak havoc and cause inflammation). I also gave up dairy, tomatoes, peppers, potatoes that I had been eating a lot of, and started eating sweet potatoes, avocado, eggs, a bit of chicken a bit of rice, and lots of romaine. I only use olive oil and vinegar. Within six weeks of this diet I was able to walk and even run! (I do know that I have a sensitivity to glutamate now, which can happen with those with neurological symptoms and Celiac, so I have to keep an extremely simple diet until my gut heals up.) I am slowly introducing new foods every week, and am adding things like berries, zucchini and squashes, salmon etc... but I keep it simple, no sauces with preservatives or flavor enhancers etc. I am enjoying feeling better than I have in years and walking!! I do crave some foods once in a while as I am still cooking healthy normal meals for my family, but feel so good eating what I'm eating and being able to live again.... It is worth it.

Dietary adjustments can be challenging, as well as learning to "eat to live" instead of "living to eat". I really believe that nutrition is absolutely paramount for Celiac healing as going "gluten free" is step number one... But to truly heal often requires more. Recent studies are finding that those with Celiac often experience symptoms even six years after being diagnosed and with little to no healing while being on a strict gluten free diet. If gluten free foods filled with chemicals and hydrogenated fats and sugars are being consumed, the inflammatory response will only continue.
I am so sorry for all you are going through. The Celiac journey can be so challenging for sure. Try to stay positive... There are many others experiencing similar symptoms. You are not alone! I hope you find healing and start to feel better soon!

Having a family member with lymphoma, and having celiac is hard. If you have refractory it would be good to have a GI doctor with extensive celiac experience (most GIs, not so much); there are treatments. Someone with a lot of celiac/DH damage will take a lot of time to heal. If you don't have a food log, it is good to start one with what/where you ate, symptoms and when they started, and stress levels (stress really slaps GI tracks around). After a few years I determined I'm sensitive to unfermented legumes (avoiding GF if it has pea protein), all NSAIDs and some other meds, processed foods, and we only eat out if the restaurant has very high GF ratings. I cook a lot and rarely eat GF bakery/shop processed foods. Consider a FODMAP or Mediterranean diet. If you are sensitive to some things now, such as dairy, those sensitivities can go away once your gut heals. Celiac has a lot of social isolation, so local or national NCA has GF resources and clubs. DH takes a long time to heal, sometimes more than 2 years: https://my.clevelandclinic.org/health/diseases/21460-dermatitis-herpetiformis https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/#:~:text=Refractory%20celiac%20disease%20is%20marked,blood%20cells%20in%20the%20gut. https://rarediseases.org/rare-diseases/refractory-celiac-disease/ https://nationalceliac.org/join/the-complete-guide-to-gluten-free-living-new/?gad_source=1&gad_campaignid=14855498565&gbraid=0AAAAAoJnH9DqvTs35nSwdTEWrZ6oADA5Z&gclid=CjwKCAjw3f_BBhAPEiwAaA3K5Cn3PxarsSqlHFyE90cPVQPzCpcepKHgAKFVswBhMvL76EEoodgTlhoCKkAQAvD_BwE

I have been gluten free since 2017. I have gone to Mayo in Arizona to get firm diagnosis and was told I had celiac very bad (2019) COVID hit and I was unable to continue going because of insurance coverage. They told me to avoid gluten-free process foods and sugar alcohols chicory root. My GI was concerned about refractory celiac. Finding a good doctor's is so hard here in Wisconsin. Thinking about going back to Mayo Minnesota. Thank you for sharing so glad you can walk no run again. It blows my mind how food can destroy our bodies. I have cut out a lot of gf process foods but am going to eliminate all and see what happens. Thanks again.