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Everything posted by emma6

  1. i dont think its that unusual, mine was similar, my TTG IgA was >250 and my TTG IgG was 2 with the negative range being <15 everyone tests differently
  2. im sorry you havn't been able to access the blood tests but im really glad your rash has made such a great improvement in just a week thats amazing hopefully you will continue to improve even more i believe there are home testing kits if you really want to pursue it but i dont know how accurate that would be and getting a negative results wouldn't rule out celiac. i dont understand how some people think allergies are a joke. thats so annoying, i guess it depends how servere her allergic reactions are whether you need to take further steps to avoid them completely. most of us have to be extremely careful if we choose to eat out to avoid cross contamination, there shouldn't be any situations where you have to eat gluten, it can be avoided, make sure you check all ingredients even on foods you think would be safe.
  3. awesome thank you so much! im not in the us so i can't find those particular brands, are they "young green jackfruit in brine" is that the right type? im asuming the ones in syrup would be too sweet. those ideas sound great i didn't even think about using it in a stir fry. i actually just bought some bbq sauce as well. freezing it is a really good idea. mad scientist cooking is the best haha i love recipes that are unexpected
  4. hey krstannkaty did you get tested and rule out celiac disease before going gluten free? if not now is your best opportunity to since you've only been gluten free for a week. most people find it very hard to do a gluten challenge to be tested months or years later. there definetely alot of great vegan and gluten free options, being vegetarian the hardest part for me would have to be being able to get enough protein, iron, calcium etc especially for people with malabsorbion and vitamin deficencies. if i didn't take supplements and eat cheese and eggs there no way i would be getting enough protein right now. just monitor everything really closely to make sure you are getting enough nutrition and not becoming deficient over time. have you tried jackfruit? i've been reading alot of of jackfruit vegan/gluten-free recipes of pinterest, i just have to find it first.
  5. thats so exciting! let me know if you need any help with finding gluten-free products or brands when you move here
  6. i do take iron and b12 tablets as well but i think it depends on the person and what your levels are at but definitely keep at eye on it thats so exciting! where are you moving to? i'm from sydney, i havn't ate out yet but i know there are alot of options. the grocery stores carry lots of gluten free options so i wouldn't worry too much especially if you are going to a major city it will be easy. also all our processed foods have to be at 0ppm to be considered gluten free as opposed to 20ppm in the US so it makes me feel safer haha
  7. i usually buy pre made falafels as the majority i've found are gluten free and vegan. they are really good on a wrap with hummus, lettuce, tomato/salads or even the same on a sandwich. i also eat them with a salad or as a side with a curry. the only recipe i've made from scratch is from http://www.hotforfoodblog.com/recipes/2015/05/04/baked-falafel-sliders-with-maple-tahini-sauce also their cheese sauce is really great, i make it with sweet potato and almond milk, its so easy and you can swap or leave out a few ingredients and it tastes just a good. i eat cheese but i still make that to have with tacos or nachos as well.
  8. hey i've been vegetarian for 8 years and gluten free for almost a year. its difficult since they are kind of opposites. i actually just noticed the advertisemnts from the cancer counil here is australia now has meat listed next to alchol, cigarettes and the sun. a few years ago when i read about it, it seemed hot dogs and super processed meats like salami were the only issue. which i only remember when i see a sausage sizzle to raise money for cancer lol but it surprised me that now the guidelines are including red meat as well and smaller amounts. https://www.cancercouncil.com.au/1752/cancer-prevention/diet-exercise/nutrition-diet/other-foods-nutrients/meat-and-cancer-3/ so i would reccomend easing into it and slowly replace meat with alternatives to make sure you are getting enough protein etc get your iron and b12 levels checked every now and then. buffalo cauliflower and eggplant schnitzels are two of my favorites. you can also make alot of cheeses and sauces out of nuts and tofu. i also eat alot of falafel, hommus and tahini. i can send you some links to recipes if you like
  9. same stairs and squatting are the absolute worst for me. for pain relief ice and ibuprofen gel are the most helpful for me. for me exercise wise, i've given up on most of the physio exercises and am doing the most i can of movements that don't aggravate the pain. walking as much as i can and exercising as much as i can but stopping a soon as im in pain. im trying to do a little more each day and increase it. my pain is often delayed a few hours, i usually feel a little pain at the time of exercises but then a few hours later its 100x worse. i also find if i dont go for a walk or move around much during the day it will get worse. so its a balancing act between enough exercise and too much i also have joint pain in my elbows which has improved a little from arm movements and using the lightest weights available. knee sleeves help me alot too the pain is alot worse with out it. i also have to sleep with a pillow under my knees and laying with my legs straight is painful. if i sleep on my side i wake up in pain from that alone. i would really recommend swimming or walking in water more than anything that has helped me the most recently. i was able to feel that muscle soreness from working out without the added knee pain which was a first in almost 2 years. i wish i could tell you i have improvements from just being gluten free. but its been 10 months now and nothing has changed. crossing my fingers that you will be different. its definitely frustrating not knowing/ i have a particular stop in the outer side of each knee cap where the pain starts and is the worst. then the more pain im in its seems to spread to the top above my knee cap and the inside. its rarely at the bottom. more so a semi circle around the side and top of my knee cap. is yours similar to that?
  10. i know what you mean, its understandable to be disappointed, its so exhausting and frustrating when doctors can't figure out whats wrong with you. i hope you get some answers soon there are alot of very knowledgeable people on this forum who may be able to offer some advice
  11. they are all in the ref range so you've tested negative for Celiac, your total IGA is in the normal range as well which means you are not IgA deficient and its unlikely that they are false negatives were you eating gluten for a few weeks before the blood test, if you had already gone gluten free that can also cause false negatives
  12. Yes i have celiac been gluten-free for 10 months, had an iron deficiency (was hoping that was the cause of knee pain) and am being treated for suspected sjogrens syndrome. im surprised they didn't do other bloodwork for you, one of the first tests i had in relation to joint pain was for rheumatoid factor, ANA and a few other arthritis type diseases. hopefully going gluten free will help with your pain is your pain constant or does it come and go? do you have swelling or redness?
  13. i have a very similar experience i never injured my knees. started getting mild joint pain in 2012 was told it was PFS and given exercises, they didn't help and caused me alot more pain. then in late 2015 its started to get worse saw a new doctor, got xrays and an mri and said PFS and sent me to a physio. the physio pushed me extremely hard on the first appointment and the exercises made the pain 100x worse. as a result of that appointment i couldn't for walk a few weeks, its the most pain i've ever been in. then after that everything got worse i couldn't drive, work, walk up stairs, bend, lift anything, every doctor since then seems to think its impossible for the exercises to make the pain worse and it must be in my head. made a third attempt at physio and still it only makes the pain worse i can do some of the begging exercises with minimal pain but the longer and harder its get the worse the pain gets. i had not improvement at all. the only slight improvements i have made are from going for walks, walking up and down stairs sideways so it doesn't hurt. i have found swimming or even just walking in water has helped alot recently they keep saying the muscle above my knee is weak and if i strengthen it, the pain will get better but doesn't really add up. im still honestly not sure if i have PFS or autoimmune joint pain as nothing really helps yet. if i do something to aggravate it like squatting, it will hurt a little bit at the time then become unbearable a few hours later. does that happen to you? what was the different diagnosis your ortho doctor gave you?
  14. an allergy test for tap water sounds quite suspicious, i've never seen any type of water listed as part of a food allergy test panel. i can't imagine how that is possible to test for, sounds like it would be a extremely rare allergy also doesn't tap water vary depending where you are. do you have a reaction to drinking water? what are your symptoms when you eat those foods? if it was an IgE allergy test, i believe the blood test more commonly has false positives than the skin scratch test but false positives are very common for both thats why there is usually a disclaimer saying that it may not be nesscessary to cut out all positive results especially if you have no allergic reaction after eating it. you allergist may be able to offer you some kind of allergen immunotherapy or a dietician referral. if you had the IgA/IgG food intolerance/ sensitivity testing, the same type of testing that is promoted a lot on instagram, it is not scientifically accurate. the positive results just indicate food you have been exposed too which are then wrongly interpreted as meaning they are allergies. so i definitely wouldn't make any significant diet chances based those results. other than an elimination diet there is no accurate testing for food intolerances although it would be great if there was. its possible that you could coincidently be intolerant or allergic to some those positive foods or you may have no problem with them. https://aacijournal.biomedcentral.com/articles/10.1186/1710-1492-8-12
  15. mine is a small patch in the exact same place on both arms, legs and hands, i've never had anything on my face. not sure if that is common or not. that sounds very frustrating to have everything blamed on having a baby. hope you get some answers soon
  16. i just tried i can access some earlier months/years of jama internal medicine but not the may 2017 issue unfortunately it might become available to me at a later date
  17. everyone tests differently, most people arn't postive for every test. so having only one positive can still indicate celiac disease. ttg suggests there is tissue damage in the small bowel. i guess it depends on the doctor. the GI i saw was only interested in the endoscopy, he was very much in the school of thought that the biopsy is the only way to diagnose celiac and the blood tests are all useless which isn't true. i decided against the endoscopy for many reason and i chose to get the genetic test which further confirmed it and retest my antibody levels in a few months to see if they went down from being gluten free. some doctors may be more willing to diagnose based of symptoms or the 4 out of 5 rule
  18. did you get your iron levels tested aswell? thats also quite a common deficiency for people with celiac i've read people with DH are also less likely to test positive on the blood tests and have more patchy intestinal damage. i also have a rash which i think is DH but every doctor thinks it is something different so that seems to be quite common as most of them haven't seen it or believe its so rare that no one has it. then when i google the rash's they suggest it sounds nothing like what i have haha one of the things that really stands out to me is that i get stinging and itching about 24 hours before the blisters appear then it calms back down into a rash after a few days. which is described in dh but not in any of the the rashes the doctors suggest if you going gluten free to see if there is any improvements just be aware that people can still have it for months after going gluten free so if it doesn't improve straight away that doesn't nesscessarily mean its not DH
  19. i agree that your b12 seems on the low side to me, mine is over 700ng as i was taking tablets for years. it won't hurt to get some b12 tablets or drops you could also ask for a total iga test and the full celiac panel if you want more testing some people do test negative to ttg iga and still have celiac so it doesn't rule it out
  20. did they give you any explanation for your positive ANA other than ruling out lupus? i would definitely follow that up it might also be worth buying a blood sugar monitor so you can test when your symptoms are really bad after eating to see if low blood sugar is causing your symptoms
  21. @Jm34 how are you doing now? i was following your posts since i have similar symptoms hope you're alright
  22. i get similar symptoms from low blood sugar, does it stop after you eat something?
  23. thank you for the explaination, makes sense that it is more prevalent among elderly people. i think taking acid is always going to sound very risky to me though as it just makes me think of all the damage acid reflux can do. also those tests sold to swallow a capsule with a piece of sting to test the ph balance of your stomach just sounds like a disaster waiting to happen to me. i guess i'm just very wary since i was diagnosed with a lot of conditions that are real but then also double as a fad diagnosis.
  24. taking acid for self diagnosed low stomach acid sounds quite dangerous for an adult let alone a child. i would strongly recommend properly researching all the quackery and pseudoscience alternative practitioners believe before following restrictive diets, jumping on a diagnosis, treatments or paying for unscientific tests. i fell for all of this when i was so desperate for answers because the natropath i saw was the first 'doctor' to actually take me seriously but in the end it all did a lot more harm than good, not everything that is natural is safe i wish someone had warned me of that.
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