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- GardeningForHealth replied to GardeningForHealth's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8610 years later, my celiac is progressing
Most doctors would dismiss the experiences I have described here, including my food diary, as somatic reactions, and begin to think of me as a hypochondriac--so I am very careful about what I share with doctors. Most of the research done so far in the medical field has focused on Type I hypersensitivity: classic IgE-mediated allergic responses. I wasn... -
- aperlo34 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Eye irritation 2.5 months into gluten free diet
Title says it all. I’m at 4 months since Dx/starting gluten-free diet but the last month and a half I’ve had pretty irritated eyes. Originally they started really dry and sensitive to light, especially in the morning. Saw the eye doc and he said eye strain/dry eyes due to season change/radiators turning on in my apartment. I’ve been using a heat mask ...- eyes
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- Mmar posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Refractory Celiac - doctor?
Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because... -
- knitty kitty replied to GardeningForHealth's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8610 years later, my celiac is progressing
@GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods. It's very restrictive, but it really helps improve gut health. It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains... -
- trents replied to Newhere19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1New to all of this
Welcome to the forum @Newhere19! Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without...
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By GardeningForHealth · Posted
Most doctors would dismiss the experiences I have described here, including my food diary, as somatic reactions, and begin to think of me as a hypochondriac--so I am very careful about what I share with doctors. Most of the research done so far in the medical field has focused on Type I hypersensitivity: classic IgE-mediated allergic responses. I wasn't even aware of Type IV (or had forgotten about it) until knittykitty reminded me about it with her post. But even when talking about an allergist, does an allergist understand that Celiac is a Type IV hypersensitivity reaction? And if so, would an allergist believe or understand that other foods can cause a Type IV hypersensitivity reaction? And if so, are there objective tests that prove these non-gluten reactions, such as a hypothetical Type IV hypersensitivity reaction to apples, plums, sausage, cassava flour, etc? I do not believe these tests exist right now. And lets say that these tests did exist, and I could take them, and obtain objective proof (besides my food diary) of my reactions to these foods. Now what? Is there a treatment besides avoiding those foods? I am not aware of it. I would simply be told: avoid all of those foods forever. And that is not reasonable either. Avoid all of those foods forever? Really? There are times that I feel malnourished. I then will eat a food from the bad list, and suddenly feel much better nourished, but then I have a reaction that begins the next day or the day after that, and lasting many days afterwards. The reaction is always the same: brain fog, fatigue, dizziness, headache, significant enough to impair any productivity. I have been on this elimination diet for about 3 months now, but each time I attempt to re-introduce a food item that I initially reacted to, I have the same reaction. Therefore, I do not believe it will ever be safe in the future to re-introduce a food back into my diet safely. This is a big problem with no solution. -
Title says it all. I’m at 4 months since Dx/starting gluten-free diet but the last month and a half I’ve had pretty irritated eyes. Originally they started really dry and sensitive to light, especially in the morning. Saw the eye doc and he said eye strain/dry eyes due to season change/radiators turning on in my apartment. I’ve been using a heat mask and eye drops and that helped a lot. However my eyes still feel tired and red and gunky, but not really dry anymore. Just a bit irritated. any thoughts? THANKS!
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Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because my GI doctor thinks it could be refractory celiac. She told me that if it’s refractory, I would need to see a “specialist” because she doesn’t know enough. I live in Philadelphia and the Celiac Center at Jefferson has 0 appointments with any doctors, I keep trying. Does anyone know of either a doctor in Philadelphia that treats refractory celiac or a doctor elsewhere that does virtual appointments to treat refractory? Thank you!
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By knitty kitty · Posted
@GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods. It's very restrictive, but it really helps improve gut health. It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency. Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes. So drink tea between meals. Choose a tea with lower levels of tannin, like green tea or Oolong tea. Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract. Dairy; Rice, any brand, even after washing 3 times Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose. Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten. This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease. Basmati rice is less likely to carry this protein chain and may be better tolerated. Don't wash rice before cooking. The added vitamins get washed away. Some of those grains of rice are extruded vitamins. They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks. Organic catchup, Potatoes; Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome." Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed. Catsup usually is acidic which can be irritating to the digestive system. Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour Often these contain cross contamination with gluten. @Scott Adams recently posted a new article about this. Gluten free products are not enriched with vitamins and minerals needed to digest and process them. They are high in insoluble fiber and saturated fats. These may also contain microbial transglutaminase, see below. Sausage, Any processed meat These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease. We have articles about microbial transglutaminase, too. Cassava also contains Thiaminase, an enzyme which destroys Thiamin. Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial. So that's a good thing. However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties. Excess consumption of pectins can result in gas, bloating and diarrhea. Bottled spices There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms. Gluten-free dairy-free ice cream These can cause reactions if one reacts to oats. Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms. Smoke from a fire; Strong cleaning chemical fumes These contain Sulfites. Developing a hyperensitivity to Sulfites is possible in Celiac Disease. We can be low in vitamins and minerals needed to process Sulfites. I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked. Celiac Disease is another Hypersensitivity Type Four disorder. Packaged sweet potato chips; Packaged plantain chips; Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO). Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria. Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract. You change what you eat and you change what grows inside you. You starve out the bad SIBO bacteria, repopulate and feed the good ones. Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria. Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat. I hope this has been helpful. -
Welcome to the forum @Newhere19! Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without endangering their health. But we also have had more than a few who have severe anxiety surrounding the endoscopy itself and cannot bring themselves to go forward with it. May I ask, what was your antibody score or scores, what was the name of the test or tests done and what were the ranges given for normal/negative vs. positive? What symptoms do you have? What caused you to seek out celiac testing? And to answer your question, many on this forum have had to go forward with the gluten free diet without an official diagnosis for the reasons already stated. You should start seeing symptom improvement within weeks. But realize that achieving a truly free gluten lifestyle is more challenging than most of us realize at the outset. There is a real learning curve involved in order to achieve consistency. That is partly due to the many unexpected places gluten is tucked away in the food supply/supplements/medications and partly because of CC (Cross Contamination) issues. I will offer this primer to get you off to a good start:
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