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Showing content with the highest reputation since 05/17/2019 in Posts

  1. 3 points
    Hello, sorry to hear you're having ongoing challenges. Some Celiacs do take longer to heal and because you're having problems with mast cell activation syndrome, you may not be recovering as quickly as you would like. Correcting your vitamin D deficiency will help stabilize those pesky mast cells. Do get your vitamin D level up to 75 nmol/l or above. Stick to a low histamine diet.... no fermented or pickled foods, no vinegar, no sulfites or sulfur rich foods (wines, shellfish and shrimp, eggs, and preservatives), no cured meats, no dairy, and no citrus. These are all things that trigger those mast cells. Keeping a food journal is really helpful in identifying problematic foods. Try the Autoimmune Paleo Protocol diet. It is wonderful in calming down your over reacting system. It may sound extremely restrictive, but you won't stay on it forever. Just meat and vegetables. No legumes, no dairy, no nightshades, no processed foods. After a few months on the AIP diet you can try expanding your diet one food at a time once a week. Keep that food journal! Do consider vitamin and mineral supplementation while you're still healing. Celiacs often have problems absorbing fat based vitamins (vitamins A, D, E and K). While you're healing, you need extra B vitamins. The nine B vitamins are water soluble and so are lost quickly if you have digestive upsets. Some Celiacs have a Mthfr genetic mutation and need to take the methylated versions of the B vitamins. I take Thorne Research - Methyl-Guard Plus. I understand what you're going through. I've been through it myself, the vitamin D deficiency, the mast cell activation syndrome, the Mthfr gene mutation requiring methylated B vitamins. I found the AIP diet and the low histamine diet to be tremendously helpful. Do talk to your doctor and nutritionist about diet changes and vitamin supplementation. (And to rule out physical problems like Cycling Lady's.) Hope this helps!
  2. 2 points
    It is normal to have continuing symptoms for quite a while after going gluten-free. Celiac disease is an autoimmune condition. The immune system does not stop making antibodies the minute you go gluten-free. It may continue to produce antibodies as long as it wants. But probably it will taper them off after a month or so. But everyone's body varies. Of course if you accidientally get some gluten cross contamination the immune attack will just keep going. Or start back up in force. If you can stay 100% gluten-free then you should start noticng improvements after a month or so, But it takes time to heal the body and repair the villi. So your digestion may be off off for quite a while. It can help to reduce/eliminate carbs and sugars from you diet, including dairy. Also stick with a very simple diet of meats. veggies, nuts and eggs. No oats. After 6 months of that try slowly expanding your diet to include baked goods, dairy, and oats. We all heal at our own rate and there is on way for us to know how fast your body will recover or how gluten-free you will be.
  3. 2 points
    We seem to have similar stories. I was having lingering issues after a hidden gluten exposure, the flu, a cold and a tooth infection. I developed chronic hives that finally ended after six months. I had new GERD-like symptoms that did not resolve. My GI kept suggesting a repeat endoscopy, but I resisted. I even went on the Fasano diet. I was going crazy trying to figure out how gluten was getting into my diet. Like you, I travel in an RV, do not eat out except at 100% gluten free restaurants and eat very few processed foods. Finally, I had the endoscopy done. My villi had healed, but I had a new diagnosis, Chronic Autoimmune Gastritis. It is not treatable until I become deficient in B-12 or iron. I am hoping an autoimmune diet might help it. I would encourage a repeat endoscopy. What I learned is not everything is due to a gluten exposure. I was in fact doing a great job at avoiding gluten.
  4. 2 points
    If I were guessing, I would guess that you went gluten free and your system started to heal and your immune system was recovering. Then maybe you were getting small exposures to gluten due to inexperience with the diet and you were having much stronger reactions because your immune system had started to heal. Just a theory - I know I had almost no gastro symptoms, but once I went gluten free, just a small cross-contamination amount would set off a cascade of symptoms lasting for weeks.
  5. 2 points

    Ending a gluten free diet

    Hi Trailblazer, No one can say for sure what will happen, but we can make some guesses. Celiac disease can affect people in many different ways, and there is no guarantee how it will affect a person. One of the problems untreated celiac disease can cause is malabsorption of nutrients. This can cause stunted growth and poor development of teeth and bone and brain. Ongoing consumption of gluten by a celiac can result in continual inflammation in the GI system. This can cause additional food intolerances to develop over time. Some of mine are dairy, nightshades, soy, strawberries, celery, oats, etc, etc. Other people have other food intolerances that crop up. These are sometimes lifetime food intolerances. Another biggie is gluten ataxia which can be caused by brain damage. Dermatitis herpetiformis (DH) is a skin condition that can happen and is not very pleasant to experience. There is a low chance of gut cancer also. There's also the potential for ongoing GI distress including pain, bloating, C and D, insomnia, brain fog, hair loss, low hormone levels, mental symptoms like anger, depression etc, joint pain, developing other AI conditions and just plain feeling miserable for years on end. The alternative is to go gluten-free and enjoy better health and live well. And most likely end up eating a healthier diet than most people do. Celiac disease is an AI (auto-immune) condition. It's a lifelong immune condition that doesn't go away. Every time they eat gluten they are damaging their bodies. Eventually that damage won't be repairable and problems will get worse. There is no upside for a celiac to continue eating gluten.
  6. 1 point

    Mccormick Spices

    I have never had a problem with McCormick spices. I have no idea what you used to test them or if you used it properly.
  7. 1 point

    Celiac Caused By Mold?

    In response to the OP-. YES I have had this hypothesis ever since coming down with a horrific case of refractory celiac disease which has left me destitute and literally dying from diarrhea even on strict zero gluten diet (15 explosive spontaneous bowel movements per day which last from 8 days to 5 weeks per episode when I inhale or touch a gluten particle from interaction with other humans or their pets. I was working an IT job in the basement of a college building constructed in 1851 which had an old underground steam vent inside our office. Repeated flooding happened and we were forced to work in standing water. For months nobody changed the carpet or did anything. The stench was so bad I was getting headaches like never before just from being in the office for 5 minutes. Then Celiac symptoms progressed to the point of living in a homeless shelter (where I was abused and exposed to airborne gluten particles daily) and I am still dying from it. I had tons of symptoms throughout life they misdiagnosed me with IBS and I ate gluten for 15 more years until now the damage is killing me. I do blame mold and I think doctors are idiots.
  8. 1 point

    Shredded Wheat Alternative

    I know this post is a bit old, but I had the same question. Maybe rice vermicelli noodles fried in little clusters or bundles like for making puffed riced https://www.wikihow.com/Make-Puffed-Rice .You could also try just baking the shaped noodles but I think they'd come out more dense and brittle, instead of light and crunchy.
  9. 1 point

    So… I'm a coeliac

    That's nice to have follow up by the doctor. They should monitor your vitamin and mineral levels for sure.
  10. 1 point

    Confusion with histology report

    Thank you for your reply. I have an appointment booked with my GP so will discuss with him. I just found it funny the guys who did the endoscopy didn't follow this up. It was just in my report and that was it. Thanks for taking the time to help me out.
  11. 1 point
    knitty kitty

    Vitamin deficiencies

    Anesthesia used during endoscopy, surgery or dental procedures contains nitrous oxide. Nitrous oxide combines with the cobalt in B12 (Cobalamin) in a way that's irreversible. The nitrous oxide combines permanently, leaving you deficient in B12. If you have low stores of B12, deficiency symptoms may not appear for days to weeks later when the B12 stores are exhausted. This time delay can prevent recognition of the actual cause and delay the remedy. Be sure to tell your anesthesiologist and doctor you're prone to B12 deficiency and request vitamin B12 shots before and after procedures involving anesthesia. This has happened to me! It's very scary to be severely deficient in B12 and suffer B12 deficiency related problems such as psychiatric problems (B12 deficiency dementia, depression) and physical problems (fatigue, anemia, nerve damage pain). Here's some articles from National Institute of Health about it.... https://www.ncbi.nlm.nih.gov/pubmed/8250714 https://www.ncbi.nlm.nih.gov/pubmed/10584542 https://www.ncbi.nlm.nih.gov/pubmed/3374544 With Intrinsic Factor problems like PosterBoy mentioned, low dose B12 supplementation all the time might be a good idea. Hope this helps connect the dots
  12. 1 point

    Vitamin deficiencies

    mcphd1, Let me first say I agree with what Knitty Kitty said.... This is about your pernicious anemia ...it is a clue. Here is a nice overview on the history of PA ...I learned a few things myself. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2376267/ PA can develop when our body can no longer make Intrinsic Factor or IF. I want to quote from their history of PA recently learned. quoting "Understanding of the pathogenesis of pernicious anaemia increased over subsequent decades. It had long been known that the disease was associated with defects in the gastrointestinal tract: patients suffered from chronic gastritis and lack of acid secretion (achlorhydria). Indeed, dilute hydrochloric acid was at one time used in the management of pernicious anaemia. It is now known that transport of physiological amounts of vitamin B12 depends on the combined actions of gastric, ileal and pancreatic components." because our bodies ability to make stomach acid and IF has been impaired our IF is limiting our ability to convert B-12 into an absorbable form. And why taking a Methy form or as sublingual is important for those who might have low stomach acid ...going un/misdiagnosed. see also this newer research on current perspectives in PA research/treatment entitled "Pernicious anemia: New insights from a gastroenterological point of view". Here is the link to the abstract https://www.ncbi.nlm.nih.gov/pubmed/19891010 It is traditionally treated as "chicken and egg" scenario ...meaning which one came first ...low B-12 levels or atrophic gastritis or gastritis's etc...which can effect IF production. but newer research confirms the atropic gastritis happens first and thus low stomach acid limits our ability to absorb B-12 properly....remember our bodies IF responsible for B-12 absorption happens in the stomach. quoting the abstract "Pernicious anemia (PA) is a macrocytic anemia that is caused by vitamin B(12) deficiency, as a result of intrinsic factor deficiency. PA is associated with atrophic body gastritis (ABG), whose diagnosis is based on histological confirmation of gastric body atrophy. ...(but) PA is the end-stage of ABG." Meaning the atrophic gastritis comes first then then the deficiency of IF/B-12 results from the atrophic gastritis. this can also explain your low Vitamin D levels. For the Potassium deficiency take some Magnesium Glycinate ....Magnesium and Potassium are twin deficiencies like IF/B-12 they are commonly low together. I hope this is not too long but I had a lot to explain in a few paragraphs. I hope this is helpful but it is not medical advise. Posterboy,
  13. 1 point
    Here's an article that explains the gluten - gut - microbiome connection thoroughly. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/ And here's a study done on the connection between low vitamin B12 and OCD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271502/ And B12 deficiency and hypothyroidism: https://www.ncbi.nlm.nih.gov/pubmed/18655403 Celiac Disease causes malabsorption which results in malnutrition, aka vitamin deficiencies. Vitamin deficiencies affect how your body and brain function. You need vitamins to make those neurotransmitters your brain needs to function. Vitamin B12 is maybe one of the most important for brain function. Without it one can suffer mental changes such as brain fog, OCD, dementia and depression a long time before a clinical manifestation such as anemia shows up. Some Celiacs have a problem absorbing sufficient B12 from their diets because of the damage to their villi. B12 (cobalamine) needs some other B vitamins to function properly like folate (B9) which needs riboflavin (B2) which needs thiamine (B1) which needs niacin (B3).... The nine B vitamins all work interdependently. If you're deficient in B12 and other B vitamins, when you go gluten free, the deficiencies become readily apparent. Gluten containing foods are required by law to be enriched with vitamins because vitamins are stripped out during processing. Removing this source of vitamins when you go gluten free can make you feel awful because you're deficient already. You feel better returning to gluten containing foods because you get those vitamins again. It's nearly impossible to eat enough gluten free foods to make up for the deficiencies due to malabsorption and damaged villi. Ask your doctor or nutritionist about supplementing with the methylated forms of B vitamins. The methylated forms are readily utilized by the body. Baseline vitamin deficiency tests should be done before starting supplementation or three weeks free of supplements. The water soluble B vitamins (whether from foods or supplements) will only stay in your system three weeks. After three weeks, deficiencies begin. I suffered through the OCD/depression/dementia from B12 deficiency and other B vitamin deficiency problems (pellagra and beriberi). Please don't give up on the gluten free diet! The Autoimmune Protocol Paleo diet along with supplementing with methyl forms of B vitamins really does work!
  14. 1 point

    Vitamin deficiencies

    Yes, I've had problems with vitamin D levels for 10 years. My doctor just recently told me they are finally up to 58 so I can stop taking the 50K pills every week. But I will continue the 1000 IU pills daily.
  15. 1 point
    Recovery from celiac damage is not always a straight line up. It can be a series of periods of progress and retreat. Symptoms can come and go. Because celiac is so variable with the symptoms it can be hard to diagnose. Some people have no GI symptoms at all, but still have celiac. Every time you ingest any gluten your immune system is re-triggered to attack. An immune response can go on for weeks or months. It's not a good idea to gluten yourself on purpose. You are damaging your body when you do so.
  16. 1 point
    My experience has been that people who think they have no “ Celiac symptoms” actually do. They might not be Gut related. Or they realize that some things they thought were normal, digestive-wise, have gotten better. Not all Celiac issues are gut related https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/
  17. 1 point
    If you doubt your celiac disease diagnosis, gather up all the records and get a second opinion from a GI who is celiac savvy. Did they even run the celiac blood panel? It sounds like you went back on gluten for a full three months prior to your endoscopy. It also sounds like your GI ruled out other things that could cause villi damage. Was Crohn’s ruled out? Before I subjected myself to a CT, I would trial the Fasano diet for a good three months and keep it low carb and dairy free to address the SIBO-like issues as Ennis and Karen suggested. Seems like a much safer option. About 60% of celiacs fail to get well? Why? Because most make mistakes on the diet.
  18. 1 point


    I am so sorry that you are sick. There is no clear cut answer. Everyone is different. For some it is a few days of misery and for others it can last weeks or trigger other autoimmune issues which can compound the symptoms. Remember, celiac disease is an autoimmune disorder like lupus or rheumatoid arthritis. Gluten just triggers the response. Once your body starts attacking, it can go on and on long after the gluten has left your body. Feel better soon!
  19. 1 point
    I would try a different doctor before going gluten-free and getting the FULL celiac panel done or at least one of the more comprehensive online test. Having celiac on record would qualify for special meal plans and accommodations in schools etc. Getting scopes done might also shed some light, but unsure on the experience for a younger child. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/ >.< remembering my mother or grandmother not letting me leave the table to I clear the plate, you eat eventually and learn not to waste any food. Anyway realistically, gluten-free baked goods in most cases are starch laden and very high in sugars/carbs. I would never suggest them as a staple but a treat. Exceptions being lower carb ones made from nut flours without the tons of starches and grains, although I am never gotten my cousins to eat those they will eat my homemade ones. I have a few healthy such as quick microwave bread I can share you can play around with. Although a balanced diet is key, so finding ways to get veggies, real fruit, and soft cooked meats/eggs should be considered even maybe some baked sweet potatoes. (PS I am a believer in the paleo diet of our ancestors so my foods and meal suggestions follow).
  20. 1 point

    Cheese Slices

    But it will list barley malt as an ingredient. ( I know you know that but maybe a newbie won’t. The only cheese I have seen with gluten are the ones that are made with beer. Not sure if Sara Lee makes gluten-free products? If they do- they will likely proudly proclaim it on The packaging and charge 40% more for it than their regular pastry.
  21. 1 point

    Hemp intolerance

    HAY posterboy! <see what I did there?? I knew it! you're outstanding in your field!! that being said: show of hands - who doesn't have google? anybody? anybody? no? o, and I just guessed about the histamines, I didn't do any research. so, thank goodness.
  22. 1 point
    ok, step one: breathe!! you're going to be ok. you sound like many of us who have been failed by the medical community. so, you're not crazy. these people just don't have celiac on their radar and they just don't care to skip treating all your symptoms ($$$) which will go away if you are celiac and stick to the gluten free diet. no, casein does not cross react with gluten <see what I mean, lolz) I BET they didn't tell you that pregnancy/childbirth is a common trigger for celiac. well, it is. like pikeagirl said: I would be curious to see what your vitamin and mineral levels are doing. celiac will starve you to death (I lost an unimaginable amount of weight and my gp wanted to put me on a feeding tube. now, I had been seeing the same doc for TWENTY YEARS and been treated for everything from pneumonia to weird rashes to potassium deficiency <lolz they called with my test results and told me to eat a banana immediately!! haha) and I guess they figured they might as well throw the celiac guess out there. TURNS OUT, it's caused by the same gene that caused my son's type 1 diabetes and my daughter's r.a. - so, if that sort of thing runs in your family, you're a prime candidate. thyroid disease, as well as other lovely autoimmune diseases walk hand in hand with that pesky gene. tests for celiac are just about hit & miss, bc they just do an igg/iga - there are better tests. cyclinglady knows the (dmg? is that right lolz) anyways, if you are interested in going through all the testing, you must continue to eat gluten. my g.i. doc never had me to do a gluten challenge bc I was so very underweight they were concerned I wouldn't survive it. you are nursing, so that is taking what little you have and giving it to baby. maybe you should go off gluten until you're finished nursing? if you are indeed celiac or gluten intolerant, you will start to feel better ie more energy for your lil' sweet babies if you're worried about the ranitidine, you can certainly break them into smaller doses, but if they're working, that's the least of your worries. if you do decide to go on a STRICT gluten free diet, you will probably want to skip dairy for awhile until your villi can get a chance to heal <bc that's where the enzyme to digest lactose is made on the tips of the villi) skip eating out until you are comfortable with the diet. the most times I have gotten 'glutened' in the past 9 years have been from restaurants. if you want to meet friends out, just eat at home first and go for the company and maybe a glass of vino or two finally, the diet is a pain, no doubt. but it becomes a 'new normal' and dying of malnutrition is so f'ing inconvenient
  23. 1 point

    Timeline of recovery

    Hi, One month is really just starting the gluten-free diet and the healing process. At 6 months you are probably more likely to have made some progress IMHO. But keep at it, because the gluten-free diet gets easier after time. Your digestion may be somewhat touchy or easily upset for the first year. You are adopting a whole new diet and your body needs to adjust. As your intestines heal they replace worn smooth villi with new long villi. Those new villi provide a substantially higher amount of surface area for bacteria to inhabit. So your gut flora mix can change dramatically, and probably for the better. That gut flora mix improvement is likely to go better if you eat low sugar and carbs IMHO. Veggies. meats, eggs, and nuts are a good diet to start. Mostly cooking your own food and eating at home is good too. A fairly simple easy to digest diet is helpful. You may find digestive enzymes help or Betaine HCL.
  24. 1 point

    Timeline of recovery

    It can take months, even a year or more, to completely heal. But, you can start to feel better in a few days to a few weeks, if you see strictly gluten-free. That means no gluten at all! Small amounts will continue the damage/ antibody production. it is possible that some of your issues are caused by something else. You might want to cut out (or down) on the lactose in dairy for a month or so - the part of the intestines that is damaged by Celiac is the part that helps digest milk. You need to give it time. Maybe eat simple and mild foods for a few weeks.
  25. 1 point

    Gluten Consumption + Alcohol Consumption

    i’ve been looking for this convo all morning! Last night, I drank only gluten-free alcohol, but got glutened with my food. After a couple hours of moderate drinking and dancing, a migraine just took over! I think dehydration + migraine sensitivity as a celiac might have made the symptoms extra unbearable.
  26. 1 point
    Patricia Neal

    Infant Formula

    I was born in 1931 with celiac disease and fortunately a new peds Dr. came to town who knew what it was but they thought it was associated with diabetes then so I was almost killed with insulin. However once out of the hospital I was given a formula. I did some research in the 1970's and found they used ripe bananas that had been dried to a powder. I have just been doing some food research and found that they are now making ripe banana flour and wonder if that could be used now. If that was what I had it worked--I still have celiac and some other food sensitivities but I am 87 and still going although I am now recovering from peripheral neuropathy and B12 and folate deficiency which are associated with celiac. Doctors unfortunately don't know enough about celiac. Mine did tell me B12 shortages are common in people whose ancestors came from Great Britain and Scandanavia which is the same place prevalent with celiac.
  27. 1 point

    So… I'm a coeliac

    And another thought- when you see the dietician - ask if she knows any simple cooking classes you could take.
  28. 1 point

    Hemp intolerance

    just give him a second. you'll be advised in another 12 page post what to take otherwise...…… wisegeek, really??? lolz I take both h-1 and h-2 blockers. and a couple of other histamine controlling things as I think I have mild mcas. I have mentioned this to every doctor I've been to see and none of them have any interest or knowledge of mcas. they tested me for mastocystosis (not the same) - so, I tell them what i'm taking. they give me a Xanax script, lolz - no warnings or interactions with anything i'm doing so they don't care. a little fiber in my tea in the morning (psyllium husks) and I rotate my diet, so i'm not eating the same foods that might build up my histamine levels and trigger a response. it took a little experimenting but it seems to be working really well and I have been able to add back almost all the foods I had been avoiding. smoking the la-la seems to even my guts out and makes my appetite normal. I think that eating hemp is different than mj edibles, yes?
  29. 1 point
    Doesn't apply to me, but I wanted to say that you are a wonderful person to help locate someone who would be considerate of your present roommate condition. Best wishes
  30. 1 point
    You might check and see if there is a DC area Celiac or gluten free Facebook group.
  31. 1 point
    You could try posting in the DC Celiacs Yahoo group. Maybe will find someone there. https://groups.yahoo.com/neo/groups/DCCeliac/conversations/messages/15778
  32. 1 point
    I am sorry to hear this challenging situation for you. My diagnosis took longer than usual same with my cousin. Similar to the posters above I share multiple intolerances etc as they say. DH, ataxia, and while my Dr was a MCAS expert I am not diagnosed as such, I get symptoms of it in addition to my DH/ataxia/malapsorbtion stuff. a cc exposure causes all kinds of havoc on me affecting my mast cells as I struggle to keep my heart rate, blood pressure, and blood sugar stable to avoid hypoglycemia afterward. This has been a struggle over the last 3-4 years as I have been managed out of one job, lost scheduled hours at another, and struggle to appear healthy enough at my current job. I have to accept the limitations of my situation. My cousin is celiac and I am DH, our hereditary side that this is found on has a medical history of gallbladder removal, colon cancer, and diabetes in our family members. She and then myself have expressed our concern that we seem to have family gluten issues and tend to be hard to diagnose. We always encourage our family members to tell their docs. In the end we have to respect the choices made by adults who choose not to be tested or follow the diet. I hope the grandchild is not a kid if so as others said you may have to respectfully intervene for a child can t make an informed decision regarding this. So in closing it impacts a lot, my delay in diagnosis caused additional challenges /complications delivering my children, limits me in the workforce, I am grateful to be employed, but my body and immune system are part of my everyday life that the choices and decisions I make include keeping my condition in mind. I also see and pay out of pocket for alternative dr, acupuncturist etc to manage my condition. I have done this long before I was diagnosed as I knew something was up, but didn't know exactly what, and helped my body manage best I could.t I am lucky as My body constantly communicated what was right and wrong and other then DH/multiple intolerances, I am subclinical on all other AI's and issues. Although I get symptoms of others from time to time. I am hopeful I can keep that one diagnosis and avoid others that are more pharmacological or serious. in my opinion, Set the boundary in your home gluten will not be offered etc to the celiac grand kid. That will send the message that you believe and up hold the diagnosis. My opinion your son is in denial and struggling to accept this lifestyle change. in the end the body will communicate even to the most stubborn . I firmly believe this. It is up to the person to heed this information. best wishes to you all and Good luck
  33. 1 point

    Ending a gluten free diet

    This disease is like a chameleon always changing, in regards to the above issues, I have my list of NO foods I can not eat anymore, I became allergic to Corn and whey, and ended up with various intolerances/sensitivities from peanuts, lactose, soy, etc. I also got other AI issues like Ulcerative Colitis, which flares to gluten, spices, and sugars/carbs. I ended up with gluten ataxia in which my immune system will also attack my brain and nervous system. It as taken over 6 years gain some feeling back in my hands, I lost the ability to do some more advanced stuff I went to college for (computer programming) because it all jumbles up when I look at it now....like I should know it but I do not. There were secondary effects of it doing something with my pancreas, I can not have any carbs or sugars without spiking my glucose to dangerous levels, and I have to take pig pancreas enzymes and digestive enzymes to eat my food and still can not have anything oily, or greasy. Now on to others issues, we have seen members get ruptured intestines and need a colostomy bag, we have lost members to cancer also. The list goes on. Antibodies can stay raised for months after an exposure constantly dealing damage inside, so cheating every now and then is not just 1-2 days of damage. Everyone is different but if they keep cheating the complications, other foods issues, other AI diseases all become more likely with time.
  34. 1 point
    FYI! Certified gluten free foods (tested below 10ppm) are often made on shared equipment. Also, foods labeled gluten free (tested below 20ppm) can also be made on shared equipment. Cumulatively, this could be too much gluten. i.e. If you use too many brands that all contain trace amounts of gluten then you could accumulate too much gluten, even if the individual product amounts are below accepted levels. Brands that use Shared Lines (gluten foods made on the same equipment as gluten-free foods) Alter eco chocolate Amy’s Arrowhead Bird's Eye frozen veggies Blakes shepherd pies Bolthouse Farms Breyers ice cream Classico Color kitchen cupcake colors Conagra Country life vitamins Drews Erewhon From the ground up Gin Gins Grandy oats Haagen-Dazs Hellman's Imagine Foods Jeff's Natural Jalapeno stuffed olives Kind Kraft foods Lance Late july Lotus Foods Lovely Candy company Nature's Bakery Nature’s Path Nestle Organic Valley Orrington farms broth Outshine popcicles Pacific Foods Purdue/Harvestland Chicken San-j Simple Mills Stubbs Unilever Vans Wild Planet fish Natural Sea Salmon So-delicious **NOTE** This is not an exhaustive list. My information is only as good as the representative with whom I spoke. This list is time sensitive. However, I am FINALLY getting well after cutting out ALL brands that use shared lines!
  35. 1 point

    So… I'm a coeliac

    Hi Oranges and Melons, While going gluten-free may not resolve all your brain symptoms, it may help. In some people celiac can attack the brain cells causing a condition called gluten ataxia. Those people sometimes have UBO's (unidentified bright objects) on an MRI of the brain. The other gotcha is lack of certain nutrients. Our brains are over 90% fat and they need fats to operate. Celiac can impair the ability to absorb fats. That's a bad thing for a brain. We are all literally fat-heads! The malabsorption typical of untreated celiac disease can impair absorption of B-vitamins which are important for nerve cells to function correctly. Guess what else our fat-heads are made of? That's right, nerve cells! So it's a 2 fisted whammy on our brain function. Anyway, they say that nerves are slow to heal. So don't expect immediate improvements. Getting used to eating gluten-free is a bit of a challenge for most people. It is even possible to make mistakes and eat things with gluten in them at first! But try to keep the mistakes (glutenings) to a minimum. Every time our immune system is triggered to respond by gluten, it will launch an immune attack. That immune attack can go on for weeks to months, depending on the person. So every mistake can set us back for quite a while. Surprisingly, it turns out there are lots of foods to eat besides gluten. Some of us have been eating gluten-free for over 10 years and haven't staved to death yet. And after a while (varies by person) the old gluteny foods are not as appealing either. Congrats on your diagnosis. Now you can plan on starting your gluten-free journey and improving your health.
  36. 1 point

    So… I'm a coeliac

    The ASD, Bipolar, celiac, etc are all genetic. But damaged intestines can cause deficiencies that make mental issues worse. The genes also cause certain detox issues, so we are more prone to cumulative exposures to neurotoxins and metals. Anyway, that is a debate to stay away from nowadays. Erythritol is easier on the gut and has mostly no laxative effect compared to sorbitol, maltitol, xylitol. Some times using less and upping the stevia or monk fruit extract works depending on base flavor. Best to use it in biscuits/cookies. I like doing simple Amaretti Bases with the Swerve Brand here in the states. It is the main base and seller at markets I sell at. I think I posted the recipe here a while back, I recently redid it with hazelnut flour and a coating of cocoa and powdered confectioners erythritol on the outside for a bit of crisp outer cocoa shell and a sweet hazelnut center.
  37. 1 point

    So… I'm a coeliac

    The newbie 101 section covers a lot about the cleanout, what to replace, what you need to throw away, etc. https://www.celiac.com/forums/topic/91878-newbie-info-101/ For now, there are some measures you can take in to simplify making quick gluten-free meals. See about getting Nordicware microwave cookware, they have omelet makers, rice cookers, grill plates with splatter covers, steam trays, etc. You can make simple meals with naturally gluten-free foods and some certified ones using these and not worry about having a whole kitchen set up. Keep a mini fridge and your own area of Glutenfree foods. Laying out butcher paper/freezer paper works well for providing a safe prep area also. Foil lining baking dishes for sheet pan meals, casseroles, Many "other" health issues can resolve as the gluten-free diet, and the longer you eat gluten, the more secondary damage and other complications can evolve including violent reactions to other foods. I was not diagnosed soon enough, ended up with ataxia issues brain/nerve damage, allergies to corn, whey. Ulcerative Colitis and the ataxia did something to my pancreas so I have to take pig pancreas enzymes and digestive ones to eat food, and avoid all sugars or carbs so I am unable to eat grains, fruit, sugar, starches etc. Other members have different NO foods, many regulars will have it in their post signature. We have seen others develop complications also from not following the diet. But not all is lost, I have dedicated my life to cooking paleo, and low carb and finding ways to make all my favorites. I even compiled a list of safe alternatives for others and sell my baked goods and food at markets. IT is not the end just a new beginning of a healthier you.
  38. 1 point

    So… I'm a coeliac

    I am so sorry. I know you were hoping for a negative result. It sounds like your GI had an older version of the scope and could not visually see the damage. That is what happened to me. There is good news. On the gluten free diet, you will feel better. Little things that you just ignored or put up with will go away. You will have more energy. Know that you will go through a grieving process. That is normal and okay. I understand that you have exams coming up (my daughter just finished her exams). I agree that is no time to try to learn the gluten-free diet well if you are able to function on a gluten diet. Once you meet with your dietician, you probably feel much better. Take advantage of that support. I had no issues starting the diet. It gets so much easier over time. I wish you well and good luck on your exams. Get plenty of sleep!
  39. 1 point

    Endoscopy without Gluten Cjallenge?

    Well, I would think your GI doc would want you to have been eating gluten before both the blood test and the endoscopy . That said, this is how my experience went down: I had symptoms and was misdiagnosed for years and years. I met a new friend who suggested going gluten free. I did so about a year before changing doctors and getting tested. My GI doc didn’t care that I was gluten free because he didn’t think anyone was completely gluten-free. I tested negative. He had me have the chromosome test and I tested positive. He had me have a endoscopy as a part of a colonoscopy that he was doing anyway (because I was that age) and he was surprised to find damage consistent with celiac. That is how I was diagnosed. I later found out that my great grandfather had died as a result of celiac, and had two cousins who got rashes from bread. GI sent me to a dietitian who I educated about the gluten-free diet. She didn’t charge me for the visit. I think she was supposed to teach me about it. But really, you ought to be on gluten while being tested. You need accurate results.
  40. 1 point
    All of "Spicely" Brand herbs and spices are Certified Gluten Free they can be found at Whole Foods and on Amazon.
  41. 1 point

    Need Help with Lab/Biopsy Results

    Hey Erin! Welcome! I can provide a couple of things, but I am not a medical doctor — just a mom who has autoimmune issues al9ng with other family members. What was the lab range for the IgA test? For the TTG to fail, the result must be pretty much zero and not just below range. Did you get the rest of the celiac tests (DGP IgA, DGP IgG and EMA)? If you are still consuming gluten ask for them. Why? I test positive to the DGP IgA even on many follow-up tests. The TTG is good for screening, but does not catch all celiacs. Then some celiacs are seronegative (about 10%). I can not really comment on the biopsies. Maybe you are just starting to develop celiac disease or you may have IBD like Crohn’s. My niece has it and she was diagnosed when she started college. She did have problems for years too. She was diagnosed via pill camera. Her damage was beyond the reach of both scopes. Do not accept the “you are a menstruating young women and that is the cause of your anemia”. I was told that for decades. It was celiac disease all along! Find out what kind of anemia you have (many types). Elevated liver enzymes can be attributed to celiac disease and other illnesses. If your doctor can not help you, it might be worth getting a second opinion for a really celiac-savvy GI.
  42. 1 point
    Here is a much bigger list: https://gluten.org/wp-content/uploads/2019/04/gfco-catalog-2018.pdf These are not necessarily on shared lines, but this is a list of certified gluten-free companies.
  43. 1 point
    Gluten Free Facilities Ancient Harvest Badger lip balm (Look for gluten free label. They produce some products in another facility) Bakery on Main Better Body Foods Bob’s Red Mill Bush’s beans Cannon Fish Carnation Evaporated Milk Carrington Farms Coconut/Ghee Choice tea Crunchmaster Crackers Dakota Grass Fed Beef Derma-e Endangered Species Chocolate Enjoy Life Everyone Soap Fischer's honey Food Should Taste Good Fourth and Heart Ghee Gluten Freeda Gluten Free Pantry Glutino Green Mountain salsa Green Valley Dairy/Cream Cheese Hillary's Allergen Free Foods Hodgson Mill Gluten Free Honeysuckle turkey Hope Hummus Jollytime popcorn Kettle Brand Chips King Arthur Kinnikinnick Foods La Croix sparkling water Libby's Pumpkin Lil'l critters vitamins Lundberg Malk Minute Rice Musselman's Nick's Sticks Once Again Nut butters Organicville Pamela’s Products Polaner fruit spread Purely Elizabeth PUR gum Red Gold Tomatos Schar Skippy natural no stir peanut butter Sky Valley Foods Success rice Tessemae's Thousand Hills Beef Tinkyada Udi’s Gluten Free Waterloo sparking water Wholesome candy Wholeme clusters Wyman's frozen fruit Xochitl Dedicated gluten free lines—shared facility Blue Diamond (crackers only) Jason’s (toothpaste only) Country Archer Nuts.com (separate part of the building) Walden Farms ***Please use this list carefully. My information is only as good as the representative with whom I spoke. Production process and ingredients could change so this list is time sensitive***
  44. 1 point

    Is Endoscopy Necessary?

    Arlene....I am so happy that your family finally woke up and decided to have a better life. Once you push through the fear of the gluten-free diet, it just gets better. I wish my brother had listened to me. He just couldn't wrap his head around the fact he most likely had Celiac, along with his Type 1. He also had to follow a low protein diet, due to his failing kidneys so maybe it became too overwhelming for him. But it ended up costing him his life and I still miss him terribly. All those "what if's". The retirement idea is still a weird thing for me. I have always worked so giving that up is strange. But I have no choice. I have 2 old ladies to help with and an old cat. 😉 My poor Sophie is 14 now and she has been diagnosed with hyper thyroid. But they all have to be taken care of and that is more important than a job I don't need anymore. Besides, for those who still work, jobs are not the same anymore. The workplace has been invaded by too much political correctness so it's time to go! The fun we used to have at work would get into trouble by today's standards. 😈 MIL must be downsized! They don't realize how much stress is gone (for everyone) once they do so. My mother fought us tooth and nail but now? She likes it there and is happy. She doesn't have to worry about anything. Assisted living is NOT a nursing home. It took moving my mother in there before she realized that. Keep working on your MIL......she'll get there.
  45. 1 point

    Fluttering/twitching In Lower Abdomen

    Hah! My first post! i appreciate this thread. Indeed, I have this isolated spasm left of my belly button and up a little just shakin away for the last several hours intermittently. Lots of gurgling and gassy today too. Not sure if I got a little cross contact glutened yesterday but fingers crossed I wake up feeling good tomorrow. Can’t quite identify a good trigger but I do wonder if this might be a sign to take magnesium supplements. Thank you all for sharing your experiences. Helps to know that this isn’t a big deal, doesn’t hurt, and since I’ve only been truely gluten-free for last 9 weeks, I’m going to chalk it up to healing for the sake of a wonderful weekend. The good days are finally surpassing the bummer days in number. (Knocks on a tree for good luck). take care all!
  46. 1 point

    Coconut Milk Gluten Free?

    We made a soup using Sprouts Brand Coconut Cream in a can. It was not labeled gluten free and after only a couple spoonfuls I had a celiac flare up. If it's not labeled gluten free I can't even take a chance. I know this post is old but thought the information could help those that are SUPER sensitive like I am.
  47. 1 point

    Mccormick Spices

    I am sorry I was trying to be helpful (and maybe reach others who are concerned about McCormick spices). I should not assume you have celiac disease, are gluten intolerant or have any issues at all. I can advise that members review the Gluten Free Watchdog’s report on spices for themselves, because the measurable amount of gluten in spices is not the same as in other products. Her general spice information is made public. Just follow the link.
  48. 1 point

    Mccormick Spices

    I did not say I was having “issues", nor did I say I was reacting to McCormick. I use a few of their spices with no problems, but the ones I use weren't the ones which tested at higher ppm's. Some people react to amounts close to the 5 ppm so I was simply letting people know about Gluten Free Watchdog's findings so that they were aware. That is all.
  49. 1 point

    Internal Tremors

    Hi Buckarett Can you describe where these tremors/vibrations are? Also, do you know what your B12 levels are? Sometimes a clinic will say you have normal B12 but by other countries' standards they would not be considered normal. It could be you are still deficient. That said, I would say it is just possible it is connected to anxiety. I had severe anxiety at the time of my diagnosis in April 2013 which persisted for some time. The anxiety was due to deficiences, I believe, of B12 and iron, and once these were remedied I felt a whole lot better for a while. But anxiety is an odd thing, it almost seems to me that once you have learned it and you think you have dealt with it it can come back in another guise. In my case I became very attuned to any new symptoms - whether it was joint pain, tingling, a feeling of buzzing, whatever it was, it was greatly magnified. These are probably all things that 'normal' people get from time to time and wouldn't pay any attention to but I really focussed on them. They seemd to get worse and worse. Anyway, I took magnesium for some months, some good quality B12 sublinguals, and to be honest I really can't exactly recall why but it did all wear off. I thought I had left all this behind but in August this year when on holiday I had time to think about a deadline that I have coming up for a project. I think possibly I got glutened, too, because we ate out a lot and my legs and arms were fizzing a lot. I then found myself really focussing on these symptoms and they just got worse and worse. And I then got a new one - it felt like there was a cell phone vibrating in my neck at one point! Again, when the anxiety wore off, so did the vibrating. This site obviously can't take the place of medical tests etc but at least in my case I can say that stress has been a factor. Also, if you are able to get out and exercise that is a great way to deal with any adrenaline that might be in your system, making things worse.
  50. 1 point

    Internal Tremors

    Thank you, thank you, thank you for asking about this! I have these, too, and they are very distressing! Magnesium and sublingual B-12 seem to help with this for me. I also tested low in vitamin D, and it's possible that my supplementation with that has helped, as well. Just my experience...hope you find something in it helpful.
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