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- knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease34Supplements for those Diagnosed with Celiac Disease
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... -
- 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... -
- Shining My Light posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Virus, celiac disease or both?
Hello, In May of 2025 I started seeing a functional medicine doctor. She ran a lot of labs, about 25 different things. 3 things came back abnormal. My vitamin D was low, 26.6 normal is 30-80 but I live in a northern state of the US and a lot of people are low, my total omegas were also low. Transglutaminase IgG Antibodies (Normal range:... -
- 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 Disease29
Refractory 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...
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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 forms 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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By Shining My Light · Posted
Hello, In May of 2025 I started seeing a functional medicine doctor. She ran a lot of labs, about 25 different things. 3 things came back abnormal. My vitamin D was low, 26.6 normal is 30-80 but I live in a northern state of the US and a lot of people are low, my total omegas were also low. Transglutaminase IgG Antibodies (Normal range: below <6 U/mL my value was 28) Transglutaminase IgA Antibodies (Normal range: below <4 U/mL my value was 30.) I had no idea what this test even was prior to it coming back abnormal. I do not have any of the typical celiac symptoms. My doctor isn’t available to go over my results until July as she is out of the office. Since my levels are normal in all other areas, including ANA, Iron, C-reactive protein, etc. It seems to me that this is likely falling into that 10% window of false positive. Here’s why I think this is the most possible answer, I got sick with some sort of viral illness. Cold/flu like symptoms about 3-4 weeks prior to having the test done. I’ve read that can temporarily raise your TTG numbers. The other autoimmune diseases that could also raise numbers don’t fit my symptoms either. I think if nothing else it was important for me to share this info with the celiac world so they had some more data from another humans perspective. I’ve done an embarrassing amount of reading on this. Even on this forum.(trents and Scott Adams feel like friends at this point 😂 ) I’ve had 2 EGD done the first in 2022 which showed having candidas in my esophagus. Seen infectious disease, which did a very thorough work up, couldn’t find any reason why that happened. I had another one in 2023 and it was normal. I really do not want to do another one. But, I think to go life long without gluten maybe the only answer. I’ve had on and off GI symptoms my whole life. I think I would be more suspicious of IBD. Which I’ve heard can also increase TTG levels. I’m mid 40’s female who doesn’t like bread and pasta as much but lives for cake. I’m pretty sure the amount of gluten I’ve eaten in the last 6 weeks qualifies because of that. Definitely haven’t eaten 4-6 slices of bread daily however. My gluten also would come from tortillas but mostly cake 😆 I think I need someone to validate my suspicions so I can’t not feel so guilty about eating gluten. 🫣 I’m toggling with this being a virus for the elevated levels or a virus sparking it. Thankful for any insight. -
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.
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