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  2. Hello, I've had a pretty rough ride health-wise over the past year due to Coeliac. I posted a few months ago explaining my story: I've seen small, incremental improvements over the past few months (headaches starting to ease, more stomach 'rumbling' instead of just an uncomfortable bloated/full feeling etc.) and have just started back at university which I'm pleased about. However, progress is painfully slow and I was hoping to have seen more concrete improvements by now. My stomach also seems to affected by the tiniest thing (i.e. I took some ibuprofen and it upset my stomach for a week or so). Is this normal? Any advice/reassurance from others who still had fairly severe symptoms after 6-8 months gluten free would be really helpful. It can be quite tough both physically and mentally sometimes and the 'light at the end of the tunnel' can seem a long way off. In addition, I had a flu vaccination around a month ago and since then, have had quite bad GI symptoms, headaches and fatigue which seem to occur in 'flares' of a few days before settling and then starting up again a few days later. I think they're beginning to settle down a little more now but just wondered if it's possible that the flu jab could have had this effect due to the severity of my symptoms and sensitivity of my 'system'/stomach post-diagnosis? I stick to very similar foods on a daily basis because I'm only able to tolerate a bland diet, so I can't put my finger on anything food-related that could be causing this and I'm very careful to avoid gluten and cross-contamination etc (I live at home and prepare meals myself, I don't eat out at the moment and have been 'glutened' once and these symptoms are quite different to that). Has anyone else in the earlier stages of recovery had reactions to vaccinations? Thanks everyone for your support.
  3. Today
  4. It really can be anywhere or any random source, Few tips, as mentioned eat whole foods only nothing processed, Use Freezer paper on your prep surfaces to fix your foods, perhaps gloves in case your touching something else (door to fridge, pantry, computer keyboard, etc) that might have trace gluten residue. Have dedicated gluten-free cooking utensils, pots, and pans. Check your soaps, shampoos, make up and other hygiene products, these might also contain gluten that could be cross contaminating. I personally had this exact issue and broke down sold everything I had and started new in a new apartment, new appliances, new everything since I was getting sick at least twice a week and could not hold a job. I will link you to the list of gluten ingredients to look out for. Hopefully you can find the cause and not have to go as radical as I did to get relief. It might be something as simple as a spice, or a random product in you house.
  5. Thanks for your replies...! Thanks for all the tips, I am indeed on a caveman diet and trying to figure out what works best. I had rice on Friday and unfortunately did get a reaction (bloating/nervousness), which for now makes carbs a thing of the past. I do indeed do very well on protein and am becoming picky about the ingredients in foods as well. For example I had asparagus the other day but they were packed in citric acid. Little did I know citric acid had sugar. Suffered a severe reaction. All-natural indeed is the only way to go when it comes to curing this thing.. Well, it's a valuable lesson. I never drank enough during my childhood but I'm trying to drink at least a bottle nowadays. It probably contributed to my gut issues. I'll do my best and see how it goes. Thanks again, Ken
  6. In Saint Denis , the capital, New shop L ile ô bio , rue Michel Ah Sam tel 0262946564sells gluten free biscuits brand Nature & Co quite nice, pasta Italian shop Mediterraneo 38bis rue Charles Gounod 0262134702 sells nice pasta and sauces Frozen shop Picard sells a Genius bread , not bad local food, beware of the gratin de chouchou , very nice but the bechamel sauce got flour easy to find salad and grilled fish, lots of rice base dishes
  7. I was in Zambia, Zimbabwe, Botswana & South Africa this summer, with very few problems. I brought a ton of Kind bars, Justin's peanut butter packets and Costco beef jerky just in case! I get the Kind Bars and Justin's on Amazon Prime. Africans eat a lot of meat (try the Kudu, it's awesome!) and veggies. Stay away from sauces. I don't recommend eating the Mopane tree worms, even though they are gluten-free. I tried to get out of it, but my tour leader said they were gluten-free and I had to try it as part of the experience....ewwwww! lol gluten-free is quite popular in South Africa...they call in the Banting diet. Maybe they know it up north as well? I would definitely stay away from chips because you have no idea what else has been in the same fryer oil. One chicken nugget and you're toast. I've never had a problem with rice. Have a great trip...Africa is amazing!
  8. Hi Jan, Have you had any allergy testing? Could be you are allergic to something else. My daughter is Celiac and was still getting ill & feeling awful after going gluten-free. Found out through several blood tests that she is allergic to shrimp, wheat, yeast & sesame seeds. Many GlutenFree foods contain the things she is allergic too so her food choices just had to change. But she was recently diagnosed with EoE from her lastest endoscopy after being sick with horrible acid. Go have more testing with a GI doctor that is current with celiac disease and it's many different symptoms. Knowledge is a powerful weapon and you need to try and stay positive. You have many people who you can turn to and a big Celiac family that is always ready to listen & help where they can! Welcome to the forum 👍🏻
  9. Hi Janst, It might help to simplify your diet. Eliminate possibilities of gluten sneaking into your diet. It's pretty easy to make mistakes with your diet when transitioning to gluten-free eating. I suggest eating only whole foods for a 6 month period until you get used to things. Cross contamination is another thing to look out for. Shared peanut butter, butter, or other condiments can spread gluten in small amounts and make us sick. Sometimes medicines or vitamins can have gluten, even teas and spices are possibilities. Kissing a person who has eaten gluten recently can cause problems too. Keep trying because every time you make a mistake you learn something. You might want to try stopping all dairy for a while to see if that helps also. And welcome to the forum
  10. I was diagnosed with Celiac Disease last year in December. Right before Christmas. — I am no longer in contact with a family member after cancelling on going to a cookie exchange. Instead of being understanding, I got attitude about how I just don’t seem to want to attend any family functions. Anyway, fast forward… After a self inflicted relapse earlier this year (I just had to see if I had been misdiagnosed, how far I could push things…), I have been extremely careful about anything I eat, drink and even prepare for my husband. We have completely stopped eating out. I went through my kitchen and gave away or threw out all of my plastic containers. I am still getting sick, at least once every two weeks. I broke down in tears earlier. I am so fed up with feeling so awful. My house is a mess most of the time. I am not getting outside chores done. I am exhausted. I finally filed for intermittent FMLA because I am on the verge of being fired due to excessive absences. I suffer through many days at work as it is. I get home and don’t have the energy to do any chores. It’s all I can do to fix dinner. The weekend finally arrives and I have all of these tasks on my “To Do” list that need to be accomplished before bedtime on Sunday. Today ended up being a typical Saturday — I have apparently been glutened. So, I am not venturing out of the house to go grocery shopping. I have felt absolutely wretched. So, I will have to cram all of my chores into one day tomorrow. That is, if I am feeling better. I really don’t know what else to do. My Doctor has helped me as much as she can without sending me to see a GI doctor. Help please!!
  11. I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then. Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has. Press the GI for 6-8 biopsies but a bare minimum of 6. {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
  12. I have seen articles linking celiac to Barretts and esophagitis. I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten.
  13. Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better.
  14. Yesterday
  15. Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx. Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned.
  16. Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
  17. In reflex testing they look at a result and decide if the next test is needed. Another example, some labs only do EMA if the Ttg is positive.
  18. Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
  19. Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels. Plumbago
  20. Thank you for responding. Yes, I understand not to eat gluten. I suppose, I wasn’t clear. I understand that there are reasons for D other than celiac disease. What I am asking is, within the context of celiac disease, is there another reason apart from villi blunting for D? My suspicion is there is not. In which case, if, after being gluten-free for six years, I get D when I accidentally ingest gluten, it is likely a sign that my SI/duodenum has not healed, which would be a major bummer. That’s basically the gyst of and background for my question.
  21. Hi DoitY, I also think the reflex teminology is confusing in this case. I read on another testing site that the reflex tests are done when the total IgA is low. In that case they perform the IgG antibody tests and call it a reflex test. Different site though so they may not use the terminology the same way. Your total IgA is not low so that's why the reflex terminology is confusing I think. And so we stumble forward through life... Maybe someone else has a better explanation of the term reflex panel?
  22. Hi! My daughters pediatrician thinks she has celiacs. These are her blood test numbers TTG 11 <4.0 U/mL (negative) 4.0-10.0 U/mL (weak positive) >10.0 U/mL (positive) EMA was positive gliadin Iga was 43 Gliadin igg was 40 Negative: <20.0 U Weak positive: 20.0-30.0 U Positive: >30.0 U However when we took her to the G.I Dr. ( from the best hospital in MA) she was not concerned and said to do the biopsy,but seems to think all her symptoms come for her consitpation. She also has low vitamin D, but high b12. We go Monday for the biopsy. I am so confused her pedi says all signs point to celiacs.Any information you can share would be appreciated. Thanks!!
  23. I'm having second thoughts to be honest, due to my budget I've got a 12 hour stopover at an airport followed by an 8 hour flight, I don't know how I can get through that food-wise
  24. I think GFinDC has some good suggestions for you & I know you don't want to hear this but I will ditto what he said about the Fasano diet. I think you need to be on it longer than 3 months. After all, in the trials he was part of, the diet was to be adhered to for 3 to 6 months. I think the majority stayed on it for around 4.5 months. Really, I think you should go back to it & do a minimum of 6 months but more likely 9 mos. to a year. I know it sucks. I know it's going to be a royal pita. But being sick is a royal pita that sucks big time. One thing you can do is to make home made bone broth. Ultra nutritious & helps heal the gut. Google how to make it. Roast the bones first though even if the recipe doesn't mention that. It will taste far better and be better. Do you have a shared kitchen? Do you EVER eat out? Do you eat ANY gluten-free processed foods? Check your meds. {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}
  25. As for eating out, I have found anywhere in the UK that in even semi-decent restaurants I can tell them exactly what I want. Look through their menu and pick things you like and tell them what you want and how to cook it. Most decent chefs will like a change and a challenge and I have been pleasantly surprised with the help that they have given. After a while you will have list of decent restaurants that you can trust. Usually I ask for a rare staeck cooked in Corn oil or olive oil with boiled potatoes and non-buttered veg. If you starts thre the chef usually gives other suggestions but make sure he/she is well aware of basic coeliac gluten cross contamination in kitchen, esp deep fat fryers.
  26. Hi plumbago, No, D is not a symptoms only associated with severe celiac disease damage, if that's what you are thinking. Every time we ingest gluten the immune reaction is kicked off again, and the damage starts all over. If we ingest gluten daily, the immune reaction never stops, and we end up with significant damage. If we stop eating gluten, the immune reaction will decrease over time, and the damage will decrease also. Healing will also happen as well. The moral of the story is Stop Eating Gluten!
  27. Hi Ken. I know how you feel. I am Coeliac (UK!) with multiple intolerances and it has taken me meny years to isolate exactly what the problem foods are. I cannot really advise you what to eat or to avoid as everyone is different but I can suggest you "go back to basics" - in other words absolutely no processed foods even those that are heavily advertised as Gluten Free etc etc - just have a good look at what is in them. Basic food, cooked from scratch is healthier and much easier to isolate foods that you may be intolerentto. I cannot eat: Gluten, including Oats, all dairy, eggs (whites are worse than yolks), soya (a real b---h), preservatives (phosphates, sulphates, sulphites -which rules out 99.9% of wines and most bottled drinks) and various veg/fruits including butternut squash, cashews, grapes, pears, leeks, Celery (sulphites) and artificially "smoked" meats and stock cubes (I keep all bones and make my own stock, free!). I now cure my own bacon (simple - belly pork with dry cure of rock salt and molasses/demarara sugar for 5 days in fridge) but stay away from all pre-packed sliced meats which are full of preservatives) and the only bread I can eat is Seattle Brown Loaves. Keep well away from "E" numbers and any foods that require processing in their production and beware of "Vegetable" oil which is usually soya. Use Corn oil, Ghee (salted butter melted in a pan, remove the scum which is the protein and you are left with a golden liquid) or walnut/coconut oils. Also beware of Crisps/Chips (USA term). Most are sprayed with some liquid prior to cooking and only one type does not affect me - Kettle Crisps/Chips, low salted only NEVER take artifical flavourings in any foods - hidden in E numbers. If I do eat any of the above the symptoms are basically the same, headaches, wind, tiredness, migraines and a feeling of "low" almost depression but not quite as bad. Can last for up to 5 days but usually 1/2. It is really the caveman diet - absolutely no fast foods. I can make myself a meal in a few minutes with anything I have in the house. I eat any meats, most veg (onions, carrots, garlic, peppers, potatoes, of course, green veg etc). A wok is good to have as is a pressure cooker for making stock out of bones. Menus: Breakfast, bacon, fried potatoes, onions peppers. Tea with Honey and Coconut cream (coconut a gem!) and Seattle bread toasted (best that way with "Pure" Sunflower spread) . Lunch: soup, toasts and meat of some kind. Apples, oranges etc Dinners: staples of potatoes, pastas (Gluten free of course), rice, meats, veg, fish. Never concern yourself with what you cant eat, concentrate on what you can and I enjoy cooking my own food and I can also prepare a dinner party and nobody knows it is designed for me! Best of luck, it is a change of lifestyle for the good. Excuse ramblings at times as I keep remembering things as I write.
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