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Recent Activity
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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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By knitty kitty · Posted
It's not rocket science, like @Scott Adams says! My best advice is not to take Thiamine Mononitrate because the body doesn't absorb it well (only 30% is absorbed, less than that can be utilized). Thiamine Mononitrate is used in many multivitamin supplements because it's cheap and shelf stable, meaning it won't break down in storage on a store shelf, or when exposed to heat or light. This stability makes it fairly useless to the body, but lines the pockets of the manufacturer. Use other forms if Thiamine Vitamin B1 like Thiamine Hydrochloride, or Benfotiamine, or TTFD (tetrahydrofurfuryl disulfide). Benfotiamine has been scientifically shown to promote intestinal healing. TTFD is great for neurological symptoms. Thiamine has no toxicity limit. It's okay to take these forms of thiamine along with the B Complex which already contains thiamine. I prefer taking a B Complex and a multiple mineral supplements to taking a multivitamin. I prefer taking a B Complex twice a day because taking it twice gives my digestive system better opportunities to absorb those essential vitamins. The B vitamins are chemical compounds that the body cannot make itself and must get from the diet and supplements. I like the activated firms of B vitamins because this helps with the MTHFR mutation that frequently occurs with Celiac Disease. The B vitamins are water soluble so any excess is easily excreted. Niacin B3 and Pyridoxine B6 does have upper limits. Niacin over 500 mg a day has been used in medicine to lower bad cholesterol under doctor's guidance for decades. Pyridoxine B6 above 500 mg a day can cause toxicity symptoms in some people with a rare genetic variation. -
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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