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  2. I am really trying hard to be empathetic with your posts because you are so new to this but really? You reject counseling, which is a very good idea, you feel that your life has ended and now you can never go out to eat and are totally isolated socially and the only word I keep seeing is can't. You know what? You are probably right because what you put out, you get back. I was incredibly sick at diagnosis and down to 94 pounds. I went years and lost years to being sick. I was 45 when I figured it out myself and had to go and ask for the blood work that they never offered. Granted, the blood work was fairly new but, as I presented with classic Celiac, there really was no excuse for their malpractice. After all that, not once did I ever feel my life was over. I was ecstatic to find out I had Celiac because I could now start living again and regain my health. Guess what I learned? I can eat out safely at selected restaurants and the number of times I have felt restricted or left out socially is about 4 times over almost 12 years. There have been those very few times and yes, it did suck but I am a grown up so got over it in about 1 day. It could be a hell of a lot worse. I could have had cancer and be dead by now. I could have been in an accident, like my husband's cousin was, and become a quadriplegic. Everyone is going to have bad things happen in their lifetime and it's how you respond to challenges in life that predicts the outcome. I know this is much harder for some people but if you keep saying can't, can't, can't you will never recover emotionally. If you do not recover emotionally, you will not recover physically. I am really hoping that things will change for you, mentally. It does take a while to recover for many, including me. It took 3 years before the very last symptom went away. If anyone has a right to bitch, it's me. I have 3 other AI diseases along with Celiac and the Celiac is the easiest one to deal with. I have bad days too but for the most part? I refuse to let this take me down and enjoy life much more than I ever did when I was a young woman. Oh yeah...and I travel too. International travel. It takes a few times before everything works out smoothly but it can be done. You really must work on your attitude or this disease will do you in and there is no reason for that to happen. Whatever help you need with eating out or food...whatever, just ask! We are here to help and make the transition as smooth as possible. You may get mad at me for saying all this but it needed to be said. I really hope things turn around for you soon and your body and mind start to heal!
  3. No, to my knowledge there is no serious damage from intolerances. You might get bloated, experience inflammation, etc., but you will not trigger an autoimmune reaction. Only gluten can do that to a celiac. The histamine intolerance may or may not apply to you. The problem is that everyone has different levels of damage. it is trial and error. The most common intolerance is lactose. Best to keep a food journal for a while.
  4. Hey egs1707, I've been thinking about setting up holidays for people with Coeliac disease and Gluten Allergy. I have not been diagnosed with coeliac disease, but was diagnosed with an airborne allergy to gluten after I lost my speech and muscle strength (full body paralysis) after 20 mins in a bakery. I had already given up gluten, began making the kids lunch with brown bread, then with frozen brown bread, then had to get rid of bread from the house when I'd been given an epipen. I know you must feel completely alone, but that's normal and you will feel bad for a few month after giving up gluten until your system is totally clear of it. I can't go into kitchens, coffee shops, restaurants, friends' houses. I even had to stop going to my mum's until I plucked up the courage to say I got migraine and numbness from just stepping in the door. I lost my speech and ability to walk after a staff meeting at work in a room where food had previously been prepared. I gave up my teaching career because I could not avoid bread and biscuits in some capacity. They served breakfasts in that school. I moved out of the area to start a new outdoor life and less than a year in, I was working as a teacher again, in a school where the staff kept the lid on the biscuit tin if I was around and where the deputy asked the entire teaching staff to eat their food outside the meeting room because of my allergy. People are amazingly sympathetic when you are not afraid of being honest. I went to my mum's for lunch last week and noticed she had packed away the toaster and any trace of wheat or gluten and made me a baked potato on a baking sheet in the oven, with a new butter, new cheese and a tin of Heinz beans. I started taking my own mug and teabag everywhere with me so I can join people in a cup of tea without using a teabag or teaspoon that may have been in contact with gluten. I can't accept tea from someone who has used their own teabags because they may have put their hand in with crumbs on it at sometime. I cannot eat some of the supermarket frozen vegetables because they are produced on a line handling Barley, I discovered after being ill and tracing it to frozen sweet corn. I bake my own bread every day using Dove's Farm bread flour and a Panasonic bread maker with a gluten free setting. I had my father-in-law for lunch and made soup and sandwiches and he kept asking for more because the bread was so delicious. Embrace life and you will feel free. It will come eventually, but never assume people don't care and don't be apologetic about the need to be careful what and where you eat.
  5. So I haven't updated this in a few weeks... a quick summary... Endoscopy gave the result I knew anyway, intestinal wall damage and with the blood test pretty much certain diagnosis. No surprise there, talk about a lot of pain for little gain Have to see a dietician for the complications of being vegetarian and have a Dexa scan as per the usual follow-up steps. Been supplementing meals with Huel gluten-free as otherwise I fear my weight dropping like a stone and I can't afford that to happen, have to keep an eye on it and hope for the best. The lifestyle change sucks and I hate it already. Everything now is about what I can't eat, can't go, can't do because of the dietary restrictions. Christmas meals out in restaurants the first casualty, already I'm becoming more isolated socially because of the illness. I don't have much belief in counsellors as all the talking in the world doesn't change that reality, nor does it change people's reactions and views... that's just cold hard facts imo. Although it seems I may see some physical recovery (some small improvements in the last day or two) the lifestyle is so restrictive that while I may well be able to exist my hopes and dreams for the future ended the day I got the first diagnosis
  6. Oh wow. I didn't know about the histamine thing. So as long as I'm being diligent about gluten then anything else isn't causing damage, right? The histamine foods or processed foods aren't damaging my intestines and they're healing since I'm being so diligent about gluten? I think that more than anything I worry that my poor intestines aren't healing - but I'm sure they are since I'm being so careful.
  7. Hi KristinAnn, Your doctor told you wrong. You should not stop eating gluten until all testing is completed. It looks like you didn't have the DGP IgG and DGP IgA antibody tests. You could ask the doctor to run those tests also. They are newer tests and more specific. It may make you feel bad, but if you want to get accurate test results, you need to eat 1/2 slice of bread daily for 2 weeks before an endoscopy or 12 weeks before blood testing. Because you are only a couple weeks into eating gluten-free, you may still have positive tests results. But nobody can tell you for sure. Welcome to the forum KristinAnn!
  8. You poor thing! You have been having a bad time! Bless your heart. I experienced similar weakness and anxiety. I had Pellagra in addition to Celiac Disease. Pellagra is a deficiency of Niacin, a B vitamin. The four D's of Pellagra are diarrhea, dermatitis, dementia and death. The dementia made me depressed and anxious. I could not think properly. I had thoughts that kept repeating and some became scary. The antidepressants I was given did not help. I had no energy and felt like I had to drag myself around. I had strange tingling vibrations in my body. I only felt better when I started taking 1000mg of niacin a day. I started feeling better within a few days. Niacin is used inside the body's cells to produce energy. There is not an accurate blood test for Niacin deficiency. If you are deficient in Niacin, you need to take a Niacin supplement (100 mg at least). The vitamin you described doesn't have enough niacin to make up for the deficiency. Doctors seem to have forgotten about this disease. I would suggest being very strict with your diet until you heal more. No grains except for organic basmati rice, no legumes, no nightshades (potatoes, tomatoes, eggplant, and no peppers -- this includes paprika since it is made from peppers), no soy, no eggs, no dairy. No processed foods. You might be able to add some of these back later after your insides have healed. Just meat and fresh veggies for now. Please try the Niacin. I see similarities in what you are experiencing and how I felt with Pellagra. I understand the headache. I felt like my brain was on a dimmer switch and the switch was being turned down gradually. It got darker and dismal in my head. My thoughts went round and round and down and down like water circling a drain. I became depressed. But everything began to brighten up after starting to take niacin. Niacin is a water soluble vitamin. If you don't need it, your kidneys will excrete it. I hope you feel better.
  9. So, I've been experiencing some seriously horrible symptoms in the last few months after I started my new job which include but are in no way limited to : vomiting, diarrhea, fainting, constant hunger, inability to control weight, emotional imbalance, and much more. I was originally diagnosed with IBS, and each medication they tried made me way worse. I took a bunch of blood panels 2 weeks ago, and got the following results Vitamin D : 23.3 (Low) Iron Saturation : 11 (Low) And the following results for my Celiac Panel: Endomysial Antibody IgA : Negative t-Transglutaminase (tTG) IgA : <2 U/mL Immunoglobulin A, Qn, Serum : 176 mg/dL Are there any other tests that I should ask for? My doctor told me the day I took the test to go on a gluten-free diet, and now it seems like that could have been a really bad idea. I'm already starting to feel better without the gluten in my life, but I have no idea if its Celiac or just a gluten sensitivity with a lot of coincidental other symptoms. I have an appointment with a GI on January 4th, but I really don't want to start eating gluten again to have the check, it makes me feel awful. Any help is appreciated!
  10. The tTg only tests for intestinal damage. The DGP tests for reaction to gluten consumed in your diet. Both tests should be run on follow-up, always. That is the only way you will know if you are compliant with the diet the way it is meant to be followed. The number that is most important is the DGP and the only number that needs to be in the very low range on testing. If normal is anything below 20, they like to see DGP in the 2-3 range, not 15, not 10. This is standard information on any reputable Celiac site.
  11. Good luck! Please let us know how it goes.
  12. Are you eating gluten free? Maybe you are missing some gluten that you are eating? If you are very gluten free, it wouldn't be from Celiac and you might want to see if there is another problem.
  13. Hi, This is Aakanksha , from India. I was diagnosed with Celiac disease when I was a child ( my mom says it is by birth). Now I am 25 years old and married here in India. I always have a bloated belly, people always mistake it with a good news. But No, its my health condition and this tummy is not going in. Does anyone has any suggestion? Anyone else having similar issues?
  14. My sister has celiac, and she even said that 6 weeks for regular food was cruel. His tummy is so bloated, he is covered in little bumps that itch, and his bottom was so sore by the end. Changing 5-6 dirty diapers a day! I'm so glad the test is done, I put him back on gluten-free foods already. I'm not waiting for results, because I already see how gluten treats him. Even if it comes back negative, he may have the sensitivity and don't deserve to be miserable.
  15. What an amazing story (that is not the right word, but i think you understand). By sharing, you will help so many (as you have been for years). You are an inspiration! I can see why you continue to help so many on this forum. Not everyone has a classic textbook case of celiac disease. It is one of the reasons I remain active on this forum too. Here's to continued good health! 🍷
  16. Okay, so now you know that a gluten exposure (aka "glutening") can knock you for a loop. Celiac disease does NOT produce consistent symptoms. Each glutening can vary. You still need a new Gi, but the advice that your hubby go gluten free might be good. Once I went gluten-free after my diagnosis, my hubby's health improved (he had been gluten-free for 13 years). I was good about cross contamination and reading labels, but i really went overboard because it now affected me! Probably stopped him from taking too many risks like eating out often and not grilling restaurant staff. Anyway, your hubby can get his gluten fix outside of the house and he can brush his teeth before kissing you. My kid eats all her gluten at school and out of the house. Because, we need a safe place to relax!
  17. Haha. Good call. I already have an appointment with a new one.
  18. Thank you. I did have the antibodies test before I saw her and they were high. I appreciate your input
  19. The gluten-free diet has a steep learning curve. Besides avoiding gluten, you must figure your own particular set of food intolerances that may resolve or may not. Remember the small intestine is damaged. First, I would recommend a whole foods diet until you feel well. That means not eating processed bread which contains a variety of ingredients that you might not tolerate. For me, I still can not consume Xanthan Gum. I bake using other gums. I also can not eat garlic or onions even after being gluten-free for three years. Second, consider a histamine intolerance. This occurs with me after a glutening. Google the foods to avoid. Avocados are on that list. You might be able to eat small amounts, but for now, an entire avocado does not seem to agree with you. Once healed, many of your intolerances will be eliminated. Just be patient.
  20. Carlsberg UK teams with Czech brewery to launch gluten-free beers. View the full article
  21. Were you diagnosed with celiac disease? If so, you may experience hair growth after being on the gluten-free diet for six months or longer. Other issues like hypothyroidism can impact hair loss or you could be like my hubby -- genetics is his cause. Hard to say with so very little information.
  22. So I'm almost a month into my diet, and my stomach is up and down. Last week it was actually pretty great. I was so excited. This week, not so much. I'm not having any pain, but my bowels seem to be all over the place. Yesterday for lunch I had avocado on some gluten-free toast. I had an entire avocado. Ate the whole thing. I had an apple with it. I felt fine after eating it, but noticed a little gurgling. This morning my stools were loose and I noticed (sorry for the TMI but I don't know who else to ask) that I had what looked like little bits of undigested avocado in my stool. Like the harder, lighter colored parts didn't digest well. i eat a lot of fat and don't usually have this issue, so I don't think it's malabsorption. I'm wondering if I overdid it with the avocado? Or if anyone else has this kind of issue with them? I googled and couldn't find anything. It seems like avocado should be easy to digest and I wouldn't expect to see it undigested....but I wanted to ask you guys. thanks for your support. You really are getting me through this.
  23. Hi emberdunn how are you feeling? It looks like we were diagnosed at around the same time, and I'm still feeling icky. My stomach is weird too. Just checking on you!
  24. I hope you get a clear answer. If his tests are positive then it is advised to test all first degree relatives periodically.
  25. Hi GFinDC. Out of that list i'm only eating: celery, eggs, soy (i stopped eating after someone mentioned, i'm soy free for a half week now), and almonds i also eat sometimes some wallnuts. I stopped eating anything thats premade or half made. Even the sausages i eat is homemade out of meat, garlic, paprika powder, cumin powder, pepper powder (note that it's a traditional Hungarian dish ~ we make and eat sausages out of pork). On top of that i eat lots of potatoes, i eat potatoes every day (i have to eat at least something...), i eat rice 2 days a week, and 2 days a week buckwheat, chickpea flour, tapioca starch some xantan/guar gum and sometimes millet... I really don't know but from now on i will stop eating any gluten-free flours, but then my mother is really crying out that i will have some kind of deficiency because what should i eat now if i can't eat anything she used to make for food. I am going to cut out every spice she uses too i really don't know. Today it's 12:44 and my anxiety started at around 11:30 ... instead of the usual 16h 17h 18h period... it's the same thing again i feel this weird feeling in my hands then i start to think that i may hurt someone or myself with them, like i would choke someone to death. Then again i keep thinking about my problems even tho i try not to. At least the sun is shining and thats a plus but the wind blows like crazy sadly. Ohh god i wish something would finally help me, if i think about my problems i am like almost crying and i still have this weird blood pumping in my head and in my hands and in my legs, yet i could chop some firewood when i went outside for some time.
  26. Hopefully Cyclinglady has been able to set your mind a bit more at ease. Not much to add but congatulations and hope all goes well.
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