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- lmemsm replied to Dora77's topic in Coping with Celiac Disease2Ocd making gluten fears unmanageable. Need advice
This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free. I have allergic reactions to some toothpastes...- asymtomatic
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- knitty kitty replied to Dora77's topic in Coping with Celiac Disease2Ocd making gluten fears unmanageable. Need advice
Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease. My doctors didn't recognize nutritional deficiencies either. I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having. Poor absorption of essential nutrients is...- asymtomatic
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- cristiana replied to Betsy Crum's topic in Related Issues & Disorders6Chest pain from celiac
My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of...- 1
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- Dora77 posted a topic in Coping with Celiac Disease2Ocd making gluten fears unmanageable. Need advice
Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get...- asymtomatic
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This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free. I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten. There are a few lists online of spices that are safe for celiacs. I also grow my own herbs and use them in place of store bought when I can. I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins. I got a lot of aches and pains when I got off gluten. I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum. Limiting one's diet too much and not getting enough vitamins, can make someone feel worse. A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties. I try to replace all my foods with homemade options. Then I know the quality of the ingredients and which vitamins I may be high or low in. Probiotics or prebiotics can help with bathroom issues. Better to get them in foods if possible and not pill form. My doctors keep recommending magnesium too. It's not supposed to be taken alone, but they don't seem to care about that. It's easy for vitamin D to be low too. That was another thing doctors told me to take. Unfortunately, they didn't monitor it and it went too high. Again, better from natural sources like food and sunlight. However, supplementing can help if you're not getting enough. Some sources say to take D with K2. You may want to have iodine levels checked. If you add iodine, make sure to get sufficient selenium for thyroid. You can get iodine naturally in most seaweed. Nori may also be one of the few non-animal sources for B12. Brazil nuts are a good source of selenium and you only need a few a day to meet RDA. Some brands of nuts specifically say gluten free. Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better. One study said aim for at least 30 different foods in a week. You might want to try kiwi fruit. There were some studies that said eating kiwi improved mood. It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods. However, I'm afraid limiting diets like that may actually be causing more harm than good. It's something I'm trying to work on. I keep trying to expand the number of foods I eat and my recipe repertoire. I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.
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By knitty kitty · Posted
Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease. My doctors didn't recognize nutritional deficiencies either. I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having. Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease. The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial. New symptoms can develop or worsen as one becomes more and more deficient. There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements. These eight B vitamins work together, like instruments in an orchestra. They need to be supplemented together with essential minerals like magnesium. Deficiencies in the B vitamins can have overlapping symptoms. Some symptoms can be traced to specific B vitamins. OCD can be traced to low Pyridoxine Vitamin B 6. Yes, I had OCD and washed my hands until my skin cracked and bled. ADHD symptoms can be traced to low Thiamine Vitamin B 1. ADHD is something one is born with. People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells. People who develop symptoms of ADHD later in life are more likely to be low in Thiamine. The same symptoms appear if one is not getting sufficient thiamine from the diet. Yes, I developed symptoms of ADHD. These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes. 99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly. Thiamine is needed to make insulin and digestive enzymes in the pancreas. Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes. The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion. Constipation is also a symptom of Thiamine and magnesium deficiencies. The thyroid is another organ that uses lots of Thiamine, too. Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine. Swelling of hands, face and feet are also symptoms of thiamine insufficiency. Our bodies use thiamine to make energy so organs and tissues can function. Thiamine cannot be stored longer than three weeks. If our stores are not replenished every day, we can run out of Thiamine quickly. If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms. Thiamine interacts with all the other vitamins in some way. Many other vitamins and their metabolic processes won't work without thiamine. In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet. Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful. Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation). Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some. Your current restricted diet is dangerous to your health. I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne). It's a Paleo diet that promotes intestinal healing. Discuss with your doctors about correcting nutritional deficiencies as soon as possible. Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder. -
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My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't. I fell badly against the wall and I think I cracked a rib then. For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
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Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“. Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon. Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them. My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes. I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit? Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either. Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free? 7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was. 10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten. 12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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