Refractory Celiac disease - what to do

[ehb]

@Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews) at places that were not dedicated, but mostly gluten free where I questioned them to make sure they were following proper cross contamination protocols. I suspect I got glutened back in December from drinking water (but not eating anything) at an italian pizza/pasta place, so since then I'm not even entering gluten-heavy places. For the month prior to my most recent blood test I had only eaten outside my home two or three times at a dedicated gluten free bakery that is owned by a celiac family. I also occasionally (< a couple times a month) will have a labeled gluten-free canned seltzer from a bar, and will ask to open it myself so they don't touch the top of it. Are dedicated gluten-free facilities also a concern with this level of sensitivity - for example if they are using products without gluten ingredients but are not certified? One question I have is if the immune reaction and antibody levels are proportional to the amount of gluten or if it's more of an on/off switch. I am just concerned because I haven't seen any changes at all - I would be willing to be more restrictive if I were confident that it would actually have an effect, but I am feeling quite discouraged living such a restrictive life (even more restrictive than what it seems like is the standard recommendation) without any results at all. Going so far beyond the standard recommendations makes me feel a little crazy like I can't trust anything, but I'm willing to do it if I know it will improve my health. This was helpful for me to take stock of how much I have been eating out of my house, and maybe that should be the first thing I remove completely - thank you! 

[ehb]

Oh I also drink wine occasionally - I understand the typical recommendation is that wine is gluten free but I don't know how to handle the possible introduction of gluten with fining agents or oak barrels sealed with wheat paste 

[knitty kitty]

@ehb, welcome to the forum!  

Yes, figuring out the gluten free diet and recovery can be really frustrating at the start.  There are things that you can change now which are more restrictive for a while, but they promote healing, and, in future, you'll be able to relax those restrictions.  

I found the Autoimmune Protocol Diet most helpful.  It's a very strict Paleo diet, but I started feeling better quickly after doing the "standard GFD recommendations" without improvement.  It's very strict during the elimination phase, but other foods are added back once there's intestinal improvement.  I recommend the book The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself, who developed the diet.  

No eating out on the AIP diet.  No gluten free prepared packaged foods.  This removes much cross contamination.  No alcohol.  Alcohol adds to the inflammation and damage.  No oatmeal.  No grains.  No pseudo grains (ancient grains like millet, quinoa, sorghum).  No beans (legumes).  No pulses (lentils, peas).  No nuts.  No seeds. These contain hard to digest lectins that promote inflammation.  No nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades contain alkyloids that cause intestinal permeability (leaky gut). No dairy.  Lactose intolerance (due to damaged villi) and a reaction to Casein (the protein in dairy) are possible.  

Casein (the protein in dairy) resembles gluten enough to provoke an autoimmune response by the anti gluten antibodies the same as if it was  gluten.  Corn will trigger an anti gluten antibody response the same as to gluten because the carbohydrate storage protein in corn, Zein, resembles gluten.  Yeast and some rice will also provoke an anti gluten antibody response.  (Basmati rice is the safest.  But no rice on the AIP diet at first.)  Some breeds of oatmeal contain gluten.

Gluten can become airborne during cooking. Boiling pasta water in restaurants is one way gluten can become airborne.     Airborne gluten from the ovens at the bakery section of a grocery or bags of dusty flour sacks in the  baking aisle can prompt a reaction.  The airborne gluten gets into the nasal passages which drain into the digestive system.  

The autoimmune antibody production process is like an on/on switch.  Pictures are worth a thousand words...

So...cut out all the triggers for the anti gluten antibodies, and focus on reducing the inflammation and repairing the damage caused by the antibodies.  Vitamin and mineral supplements help correct nutritional inadequacies resulting from the malabsorption caused by the autoimmune response.  Certain vitamins are needed to lower inflammation.  Others are needed for repair.  

Try the AIP diet before considering yourself as having Refractory Celiac Disease.   Celiac is a marathon, not a sprint.  It's do-able.  Put your serious track shoes on.  

Edited June 13, 2025 by knitty kitty
Typo correction

[ehb]

Thank you @knitty kitty this is all very helpful insight, and I was considering doing a strict elimination diet like this. I was considering the one from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC5691745/ which seems a little shorter/less restrictive? But I see how the AIP diet could be better for addressing the general inflammation/autoimmune response. Did you work with a nutritionist or doctors for this? I am very worried about going on such a strict diet without professional support and losing essential nutrients/body weight. If not, how did you know which supplements are needed? I am also struggling in general with managing and maintaining such a strict diet while living a full life as a 27 year old - I travel frequently, and will be doing a cross-country road trip to move for an intense job in the fall, and feel that something like this will be nearly impossible to maintain on the road and during travel. I keep feeling like I can be more strict and deal with this once I have a more stable life, but that stability never seems to come. I am not sure whether to start this now to get it under control for a couple months before the move or wait until I will (hopefully) be in one place for a while after the move. I would like professional help from therapists, dieticians, and doctors to deal with this, but so far they have all been mostly dismissive and not given me many options, which has led to me being dismissive and just following the typical recommendations. No one has taken it seriously and recommended anything so drastic like this. 

[ehb]

I'm also already struggling to get the motivation to eat because of the anxiety around food, not being able to eat the things that I am craving, and the amount of time and effort that goes into preparing every single meal, so I worry that increasing the restriction will just make it harder and harder to eat. 

Thank you all for all the suggestions and listening to my concerns, it's helped me feel like there are more options and feel understood, at a time when I am feeling pretty hopeless and stuck. 

[knitty kitty]

I understand your exasperation.  My doctors were totally clueless.  Me?  I couldn't believe it was so simple.  I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body.  It's about giving the body the nutrients it needs to heal.  Read my blog for more of my journey... 

Do take the time now to make some changes.  It's a matter of putting on your own oxygen mask first before you do anything else.  I regret I didn't do more to take care of myself first.  It's amazing how quickly ones life can unravel if in poor health.

Simple things you can do immediately that will help are:

Stop consuming oats, dairy, and corn.

Keep a food-mood-poo'd journal so pinpointing problematic foods is easier.

No alcohol.

Avoid nightshades. 

Do cut back on or eliminate processed gluten free facsimile foods.  These are not nutritious.  They are not enriched with vitamins and minerals like their gluten containing counterparts.  They contain saturated fats and excess fiber that can be irritating to the digestive tract.   They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO).

Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil).  

Do make stews and roasts overnight in a crockpot.  Make small batches.  Leftovers increase in histamine the longer they are left.  

Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing).  There are eight essential B vitamins.  They work in concert together like an orchestra, so they need to be supplemented together.  Taking extra thiamine and Benfotiamine have been shown to be beneficial.  Weight loss can be a symptom of insufficient thiamine.

I believe you mentioned you were low in some vitamins. Can you tell me  which ones?  

[ehb]

@knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily 

[knitty kitty]

Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac.  What did your doctor recommend?

What about your Vitamin D?  It helps regulate the immune system.  

[ehb]

@knitty kitty I have an appointment to go over the results tomorrow. Vitamin D was in the normal range. I’ve decided to start the gluten contamination elimination diet, while avoiding nightshades as recommended by the AIP. I am still hoping to get support from a nutritionist or advice from the doctor about supplements to make sure I’m getting enough nutrients. I’m still having a hard time sorting through all of the different brands and possible combinations

[knitty kitty]

@ehb  

Great you're going to start the AIP diet!  I know it's scary and stressful, but you'll soon start feeling better.  It's a challenge, but you can make it.  Do ask for a Erythrocyte Transketolace test which tests for Thiamine level.  

I hope your Vitamin D level is between 70 and 100 nmol/L.  In this optimal range, Vitamin D can act like a hormone and regulate the immune system.  Vitamin D 3 is the form that the body can utilize well.  I was prescribed the synthetic firm D2 and my body didn't like it.  I know getting my Vitamin D up in the eighties made a world of difference to me.  My depression improved and I felt so much better at higher levels.  

I prefer Life Extension brand for many vitamins.  The important thing is to read the label and watch out for fillers like rice flour.  This may help.

Keep us posted on your progress!  

[Zuma888]

On 6/13/2025 at 11:52 PM, knitty kitty said:

@ehb, welcome to the forum!  

Yes, figuring out the gluten free diet and recovery can be really frustrating at the start.  There are things that you can change now which are more restrictive for a while, but they promote healing, and, in future, you'll be able to relax those restrictions.  

I found the Autoimmune Protocol Diet most helpful.  It's a very strict Paleo diet, but I started feeling better quickly after doing the "standard GFD recommendations" without improvement.  It's very strict during the elimination phase, but other foods are added back once there's intestinal improvement.  I recommend the book The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself, who developed the diet.  

No eating out on the AIP diet.  No gluten free prepared packaged foods.  This removes much cross contamination.  No alcohol.  Alcohol adds to the inflammation and damage.  No oatmeal.  No grains.  No pseudo grains (ancient grains like millet, quinoa, sorghum).  No beans (legumes).  No pulses (lentils, peas).  No nuts.  No seeds. These contain hard to digest lectins that promote inflammation.  No nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades contain alkyloids that cause intestinal permeability (leaky gut). No dairy.  Lactose intolerance (due to damaged villi) and a reaction to Casein (the protein in dairy) are possible.  

Casein (the protein in dairy) resembles gluten enough to provoke an autoimmune response by the anti gluten antibodies the same as if it was  gluten.  Corn will trigger an anti gluten antibody response the same as to gluten because the carbohydrate storage protein in corn, Zein, resembles gluten.  Yeast and some rice will also provoke an anti gluten antibody response.  (Basmati rice is the safest.  But no rice on the AIP diet at first.)  Some breeds of oatmeal contain gluten.

Gluten can become airborne during cooking. Boiling pasta water in restaurants is one way gluten can become airborne.     Airborne gluten from the ovens at the bakery section of a grocery or bags of dusty flour sacks in the  baking aisle can prompt a reaction.  The airborne gluten gets into the nasal passages which drain into the digestive system.  

The autoimmune antibody production process is like an on/on switch.  Pictures are worth a thousand words...

So...cut out all the triggers for the anti gluten antibodies, and focus on reducing the inflammation and repairing the damage caused by the antibodies.  Vitamin and mineral supplements help correct nutritional inadequacies resulting from the malabsorption caused by the autoimmune response.  Certain vitamins are needed to lower inflammation.  Others are needed for repair.  

Try the AIP diet before considering yourself as having Refractory Celiac Disease.   Celiac is a marathon, not a sprint.  It's do-able.  Put your serious track shoes on.  

AIP really worked for me as well.