Leaderboard


Popular Content

Showing content with the highest reputation since 06/14/2018 in all areas

  1. 3 points
    Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten, other things become collateral damage and the body "associates" them with part of the problem. I have had intolerance come and go and some stick around. Read up on food intolerance issues, and see if this might also help address some of the issues.https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  2. 1 point
    Have you had your son tested for other allergies? I just found out I am allergic not only to gluten but also corn, soy and peanut, possibly more things. We did just a basic food allergy panel for starters. These 4 ingredients are in nearly everything. It has only been 1 week since my diagnosis. Hope is getting better soon. And yes the sun or any hear aggravates the rash.
  3. 1 point
    Hi poorlypixie, You can "fail" all the standard celiac testing and still have celiac disease. The endoscopy can only reach about 5 feet into the body, just the beginning of the small intestine. So that leaves 20 or so feet still unexplored. And the blood tests are good but not perfect. Some people just don't make the grade on antibodies in the bloodstream but still have damage in the gut where the antibodies naturally concentrate. People with DH (dermatitis herpetiformis) sometimes don't have positive blood tests also. Probably because the antibodies are attacking the skin instead of floating around the bloodstream. There just isn't any perfect celiac disease testing available right now. Your dad should have his vitamins and minerals tested, and so should you. It is not uncommon for untreated celiac's to be low on vitamins B, D, and others. Iron may be low also. That is also a possible indicator that you are having malabsorbtion ( a celiac disease symptom). If you can't get a positive test you can still go gluten-free for 6 months and see if it improves your health. You will either start feeling better (not perfect, but better) or there won't be any change. If there is no change then you may have something else besides celiac disease or in addition to celiac disease. But at least going gluten-free will get you started on eliminating or confirming celiac disease. I say 6 months because it can take that long to get better enough to be sure.
  4. 1 point
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things. To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat. They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD. The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. Source: Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023
  5. 1 point
    There are some labs you can order online I am sure others have some suggestions on these but I am unsure if they go to your country. I had someone suggest to me with my health issues that I go to another country to get it treated better. Test for test I can not give much advice. I assume you mean psyllium husk, umm it is not so good with a irritated gut, the stuff is like scrubbing your intestines with a loofah sponge...good for occasional cleaning but rough on the intestines and will irritate them. Yogurt should also be avoided as the dairy is hard to break down and is going to cause gas and bloating, a plain non dairy probiotic will work better (I make my own yogurt with coconut milk and probiotic pills). Fiber wise look to stuff like leafy greens low carb foods (carbs will ferment and break down making gas worse) like nuts, seeds, ground into butters for ease of digestion. Some people find konjac to work good, works like a thickening agent, and is used it low carb foods like shirataki noodles/rice, does cause gas in some people with a bad gut biome (I could not eat it for a few months with a candida issues that sprung up after antibiotics ruined my gut biome) My personal favorites for Fiber are whole pumpkin seeds, cocoa nibs, that I get or grind into a fine meal/paste and use in meals, I also use hemp seeds but you have to be VERY careful about sourcing non contaminated ones. Other things with gas, go easy on the garlic, onions, starchy veggies or foods, fruit, and grains. More sugar/fermentable carbs you eat the worse it will become and spices can make your gut throw a tantrum.
  6. 1 point
    A couple things I forgot to mention earlier...... pressure points ~~~ dh likes to hit pressure points. that can be clothing seams, bras in general, where your socks hug your calves, stuff like that. Loose clothing helps!!!! Going barefoot helps if you're in a climate where you can do that. DH also likes to hit scars/scar tissue. I have a hysterectomy scar that got strafed time & time & time again. Other various & sundry scars I've gotten over a lifetime got hit often as well. Also, there was a good period of time there where I could not wear a band aid without my skin reacting like mad. It would get all red, puffy & itchy/burning where the band aid was & many times would then develop dh in that area. I think part of it is that your skin is just so ridiculously hypersensitive & those antibodies are just rearing to go attack anything at all. Just be aware of those kinds of things is all. I took my earrings out & didn't wear them for a couple years b/c they were even irritating me.
  7. 1 point
    I would tell myself to get a vitamin panel done. To search gluten free on Amazon. That I am going to be healthier than most because i am cutting out processed foods and restaurants forever. To be my own advocate and best friend because doctors know little about Celiac and they will suggest things that could expose me to gluten. That my dilligent research, calling manufactuers and farms, is not paranoia but responsible protection. That others, friends and sometime family members will not understand my disease and that for my safety i must be impolite by refusing food items. Finally i would say, yes this is a time consuming disease but thankfully one that i can manage.
  8. 1 point
    Do give the diet a good strict try. If you don't trust your family to keep you safe you will have to do most of your own food preparation. It is tough when you are living with gluten eaters but it can be done. If you haven't already do read the Newbie 101 thread at the top of the Coping section. It has a lot of good info. You may also want to look at threads that have advice on living safely with gluten eaters or ask any questions you may have about it. I do hope you get some relief soon.
  9. 1 point
    Relief. I had been so fatigued from anemia. I have Thalassemia, which already caused my hemoglobin levels to be under range, but my body had been compensating for it my entire life. It was the additional iron-deficiency anemia that literally wiped me out (that and 30 days of periods thanks to menopause). I saw my blood test results. Just one positive (DGP IgA) but I knew in my heart, that celiac disease was the cause of my anemia. There were little signs too that in retrospect, like my Thalassemia, I had adapted (all my doctors ove the years assumed my anemia was due to Thalassemia or heavy periods). Like being little, never overweight despite a voracious appetite, GI issues that waxed and waned for decades and allergies. I had a distinct advantage over many of our members. My hubby had gone gluten free 12 years prior to my diagnosis per the poor advice of my allergist and his GP. The gluten free diet worked for him. I did all the food prep and cooking for him, so I knew exactly what gluten free meant. I also knew that he was healthy because of the diet. I was ready to feel good again and to be rid of my constant fatigue. Oh, I have had had a few setbacks, like everyone else, but I am much better. My celiac disease is in remission. Healthy villi on my last endoscopy/biopsies. You will find your way. Heed the advice of seasoned members and I am sure you will heal much faster. Maybe, just maybe, your Issac Syndrome will resolve or go into remission. My thyroid nodules and enlargement are now gone thanks to the gluten-free diet (mostly Whole Foods and not processed). You just never know. Food can heal! Welcome to the forum! P.S. Grieving is normal. Expect to go through all the stages of it.
  10. 1 point
    In my case, I had a few other issues, I would have told myself to drop oats then also, and forget about processed foods and go for a whole foods only diet. I also would have given myself advice on treating my then undiagnosed Ulcerative colitis issues by telling msyelf to adopt a paleo based diet leaning towards a akins/keto ratio of fats and protein low carb. Doing so would have really sped up my healing process lol, the low inflammation diet basis and at the time would have been less overwhelming to just look at meals searching "Paleo" "Atkins" "Keto" and making sure to avoid stuff from the NO list. Probably would have also left a note about good and bad days and a roller coasters of it from the healing, and clearing out of my body as it found a new normal and the immune system cranked down.....Food diary would have been implemented WAY earlier to find intolerance issues. I would have also given myself a list of supplements to help with anxiety, fog, and deficiency issues and dosing. Including stuff like Liquid Health Energy & Stress, Neurological support, Natural Vitality Magnesium, and the stuff for my UC early to help it heal. And last but not least....I would have told myself to make my own kitchen area in my own room away from the family, and just invested in new microwave and combo crockpot/steamers along with nordicware microwave cook ware......would have saved so many fights with my family about cross contamination and making me sick.
  11. 1 point
    Hi Shann, Welcome to the forum! Hmm, what I would tell myself? Well, be patient with your progress. Going on the gluten-free diet isn't an instant cure to all your health problems. It does help a lot, but it takes time to get better, possibly years. Gluten is not the only possible problem food. Besides wheat, rye and barley, oats can be a big problem too. And milk. Plus soy and nightshades, carrots and celery and caffeine. It will take time to figure out all these additional food intolerance problems, and you won't feel right until you get them out of your diet. Plan on sticking with a very simple diet for at least 6 months. Basic meat and veggies, nuts, eggs, some fruit. Don't eat out, don't eat sugary or carby foods. Understand that an elimination diet or 2 or 3 are in your future. But they will help identify those additional food intolerances and make things better. Remember you didn't get sick in a day and you won't recover in a day. But things can trend upwards even if slowly. Even if some days it seems like I am going backwards. Try some selenium for fatigue, like eating few Brazil nuts now and then. You'll be low on vitamin D for years, even after going gluten-free. So learn about vitamin D and how to improve your levels. Check out the vitamin D council. Eventually you'll end up getting rx vitamin D pills. Keep plenty of aspirin and Pepto Bismol on hand. Learn to eat corn tortillas and wraps instead of gluten-free bread. gluten-free bread is way to $$$ to eat all the time. Take it easy on alcohol and try to get lots of sleep. Which isn't easy sometimes. Peppermint tea is helpful for gas/bloating. The first few years may be harder than the rest. Maybe the first 5 years. But things can get better.
  12. 1 point
    I am looking for a group of tweens/teens with Celiac for my daughter to join. She is currently 11 yo and diagnosed with Celiac Disease 6 months ago. She is responding very well to the gluten-free lifestyle, but social situations are challenging. It would be terrific for her to have a group of people her age to share experiences, stories and gluten-free-strategies. We live in the Atlanta area.
  13. 1 point
    The restaurant cards are terrific, but I have only used them when traveling internationally. That's when I a willing to risk getting glutened. However, while at home, I prefer talking to the head chef (nice restaurant) or choosing a restaurant that has been reviewed by celiacs (not just gluten free groupies). Every time you eat out it is a risk. Each glutening can set you back for months (as documented via labs in my personal case). Playdates? Bring your own food. I would NEVER trust another parent to feed my child or me, if they have not had training or are a celiac. For example, they bake gluten-free brownies for your kid. How clean was the pan? What about the mixing bowl? Were they baking with gluten at the same time? Read our Newbie 101 for some excellent tips (under the "Coping" section). Does this mean that you should never eat out? No, but most of us oldies would advise not eating out until you have mastered the gluten-free diet and are feeling better.
  14. 1 point
    Tissue transglutaminase is involved with 5HT in serotonin production. I occasionally take a very low dose of 25 mg of 5-htp to build up my serotonin stores. I would not recommend taking 5-HTP more than a few days, but a dose here and there can work wonders. Rumination is one of the first signs of depression. When I find myself ruminating I take a 25 mg a day for a couple days and stop as soon as I stop ruminating.
  15. 1 point
    Thank you all for your advice and support. I came across this thread in search for help after a gluten exposure. I got one of the contaminated Cheerios boxes and am fighting depression among other fun symptoms now. It is a huge relief to know that this reaction is not uncommon. I'll stick it out and follow your advice! Thank you for being such a supportive community!
  16. 1 point
    This is exactly the thought process I go through. It is a real physical illness, and the psychological symptoms are part of it. The hardest part for me is to give myself permission not to worry about what I'm not getting done, and get the extra rest I truly need. Extra sleep helps me a lot. I also have to remind myself over and over why I am feeling that way and that it's as real and debilitating as any of the other other physical symptoms I experience, like nausea or headache. Even though I know this is all true in the rational part of my brain, I continue to struggle with it anyway. It is helpful to hear someone else verbalize it, sort of validate my own experience. Thanks for sharing this.
  17. 1 point
    This is my life today. I went on an out-of-town trip, and was extremely careful. I only ate at places recommended on my findmeglutenfree app, I told all the servers about my needs, I only ate gluten free food. I ate a LOT of salads because that was all I could figure out to eat at times. Sometimes, I just didn't eat at all if it didn't seem safe. And then... On the way back home, I drank a liquor that I didn't realize most likely contains gluten -- at least I think it was that. It's possible I may have been glutened by cross-contamination somewhere along the line. Whammo! Today, I am depressed and self-condemning. I have tons of work to do, and I can't face it. I don't have any answers other than those given by others above. I'm just glad this thread is here, because it reminds me that I'm not crazy, and that I'm not alone in experiencing these types of symptoms. I think the thing that I'm beginning to realize is that when this happens, it's not a weakness on my part. I'm actually physically ill -- even if the symptoms are all appearing in my brain. In the past, it has been hard for me to tell myself and other people that I am sick when I feel this way, as I felt as if I was really only sick if I had something more tangible, like the flu. Now, however, I realize that this is real, physical illness. I admit, though, that I still have to remind myself of that over and over when I'm feeling this way.
  18. 1 point
    I have positive messages I've written in bold print on 81/2 x 11 paper hung up here and there. They help snap me back to reality when my anxiety hits. That way even though my anxious thoughts feel real, I can remember they are only a symptom, not what's really true.
  19. 1 point
    Unfortunately I don't deal well with my own emotions. Periods of intense depression, outbursts of anger and anxiety that I now associate with undiagnosed celiac disease are why I don't have a career. Short-term though, realizing that it's not you but something else controlling you, paradoxically, can help a lot. It WILL pass, and you'll probably find patterns of your own thinking that tend to lead you to darker places, and that can help too. Realize that during these times, you simply will not be able to cope with life as you can otherwise. Don't be afraid to cancel or delay things, because you are sick at these points in time. As to feeling like you want to die, take time in those moments to think about what you want at that point in time, what will comfort you at that moment, and do it. Be it sleep, eating (safely of course!!!), a movie, music, talking to someone, a walk, reading, dancing, adult stuff, doesn't matter. Being hedonistic and removing my guilt is how I can best help myself. Then, when you can, do some work or something that should get done. And if you try and fail, just stop and be like 'oops, guess I wasn't ready just yet'.
  20. 1 point
    So sorry you've between going through this, sincerely. I experience the same type of symptoms from glutening and it's incredibly difficult - honestly it's a traumatizing experience to realize that all of your emotional stability can spontaneously disappear, in a way that you're powerless to do anything about until it passes. My boyfriend tells me it's like he lives with a different person when it's hit me like that - the best way I can describe it to him is that it's like I've been thrown down a well. Everything goes dark and there's no way I can even start to pull myself out of it : ( It's led to me becoming extremely, extremely cautious in avoiding gluten - after riding this lovely ride about once a month for the first 6 mos after I was diagnosed, I'm either irrationally phobic about gluten, or I've rationally decided no risk is ever worth feeling that way, depending how you want to look at it - but since I got super strict it's only happened once (freak contamination accident). It sucks for what it's done to the rest of my life, but it is no question so much better for me to avoid going through that, as much as I possibly can. In terms of getting through it, here are the best tactics I've found, such as they are: With the small rational piece of my brain that still works, remind myself as often as I can that this will pass, that it's a physical reaction, and that even though I can't conceive of it in that moment, I'll feel happy and sane and positive again in a few days. Eliminate all obligations/activities/stress that I can for those few days. Stay home from work if I can, and try not to expect anything from myself until it passes. The only thing worse than having a completely broken brain is attempting to be a productive person or deal with any kind of difficult situations while I'm stuck with it. It took a while (I'm a bit type A by nature) but I try to accept and not blame myself for respecting my limitations when this happens. Do something mindless, to try to occupy your brain while you wait it out. Seriously, Netflix has been a godsend for me at these times. I find anything I think about while my mind is in that state gets cast in the darkest possible way, and I can end up thinking awful, very upsetting thoughts if I give my brain any rein to wander. So I try to put on a documentary or whatever show I can think of to distract myself, and just keep letting the next episode play and trying to not let myself think about much of anything until I can fall asleep. I wish I could be more help! I guess the best thing I can say is that it does always pass, eventually, and keeping safe from gluten is keeping my brain on track too : ) I'm normally pretty balanced and upbeat and have lots of fun and joy in my life without gluten - and I've been able to keep in that place pretty well for the last 6 months. I hope you get to a safer, happier place soon too : )
  21. 1 point
    Hi Puffee, It seems like you really just got started on the gluten-free diet. It's not a light switch where you can just throw it and you get better instantly. It takes time. Your gut has a microsystem of bacteria that changes based on what you eat. Some bacteria do better with the gluten and others do better without it. So you can go through a re-balancing period at first and that can last for a while. A couple things that might help are getting rid of all diary, and sugar in your diet. From what I can see, Bentyl has lactose in it, which can be a problem at first. Being you are new to the diet, you have a learning curve to master. So be a little patient with yourself as you go along, cause it can take a while. The easiest way to start the diet is to stick with all home cooked meals made from whole ingredients. NO processed foods or spice blends, or multi-vitamins with tons of ingredients in tiny type. Remember everything you eat or drink needs to be gluten-free. After you have been at a a few months, you could try an elimination diet if things don't improve.
  22. 1 point
    Dear Mrs. Parsons, Thank you for your interest in DOLE
  23. 1 point
    Does anyone have any restaurant recommendations for the Cedar Point/Sandusky OH area?
  24. 1 point
    Each and Every St. Claire's Organics Products Are: 100% Vegetarian Organically Certified by Oregon Tilth and the USDA Wheat-Free Gluten-Free Peanut and Tree Nut-Free Dairy-Free Corn-Free Soy-Free Shellfish and Fish-Free Gelatin-Free Casein-Free Genetically Modified Organism-Free (GMO) These are what i use, St claires mints. Hope you feel better!
  25. 1 point
    I have had DH since I was diagnosed (1997). It is nowhere near as bad as the first 2 years, however, it still comes up -- especially if I do not take Dapsone every other day or so.... Problem is, I eat out 2-5 times a week, so it is going to happen no matter how careful I am... For occasions at friends houses, I always have aluminum foil in the car (for BBQ purposes) and I always bring chips that I can have/like. The DH will eventually clear up (especially with the assistance of Dapsone), but it takes time -- his body will take a while to clear up the "histamine" reaction it has had for the past several years -- Rome wasn't built in a day. I also used Fluoconide (a steroid cream when I was first diagnosed) -- it helped the bad areas (joints, eyes, beltline, etc) Things will improve as long as he is is eating well (no gluten, lots of veggies, lots of fruit).... Oh, and sometimes execise and sunlight make the DH worse -- I don't know why..