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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29Refractory Celiac disease - what to do
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... -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29
Refractory Celiac disease - what to do
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... -
- knitty kitty replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29Refractory Celiac disease - what to do
@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... -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29
Refractory Celiac disease - what to do
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 -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29
Refractory Celiac disease - what to do
@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...
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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.
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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.
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By knitty kitty · Posted
@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. -
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
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@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!
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