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Everything posted by GFinDC

  1. Hi Danielle, Welcome to the forum! Some research a few years ago found that it can take up to 18 months on the gluten-free diet to heal celiac damage to the gut. Not in every case but some. So it's not surprising that your digestion is not 100% yet and you still have off days. It sounds like you have a pretty good diet, but there may be a few things that could help. I don't know if you are consuming milk/dairy products but they often cause problem at first. So one thing you can try is eliminating all dairy from your diet for a while. Another thing that may help is eliminating sugar and carby foods like rice or white potatoes etc. These can cause gut symptoms if your gut flora is not optimal. They feed bacteria that can cause excessive gas etc. Another possible help is to eliminate oats. There are some celiacs who react to oats like they do wheat, rye and barley. Soy is another possible gotcha in the diet and is also a top 10 allergen. Spicy foods may cause upset also. Gaining some weight after going gluten-free is normal as your gut is healing and can begin to absorb nutrients more effectively. Also some people experience more hunger after going on the gluten-free diet which is normal and should taper off in time. Your body needs nutrients to heal and create new cells. So it is better not to do a weight-loss type diet when that healing process is on going IMHO. I hope you feel better soon.
  2. Hi Wade, Welcome to the forum! I can tell you have done something right already, you are taking the possibility of cross-contamination seriously. 👍 You are also right about bleach not being effective to destroy gluten. Gluten is not a germ even though our immune systems treat it like one. So disinfectants don't help. You should have to throw out your food though, or towels etc. Just rinse the bottom of the food containers off with plain water. Towels just wash them, no problem. We do generally suggest replacing scratched non-stick pans or plastic containers that had gluten in them, and colanders. The reason is it is very hard to effectively clean out those little scratches and such. Wooden spoons or bowls have the same issue. Although you can sand those down to a new clean surface. I keep some of my gluten-free food items in a separate dorm style refrig that others don't use. I also keep some silverware in a separate container and keep pots and pans in a separate place. I have my own toaster also. I rinse plates and bowls etc before using them because I live with gluten eaters. That just takes few seconds to do. I also often wash my hands before eating because there could be gluten traces on handles etc. It's helpful to put gluten-free foods on the top shelves of the refrig or cabinets. That way gluten crumbs don't fall down on it. It gets easier doing these things in time.
  3. Is there a restriction based on how many posts a person needs to make before uploading pics?
  4. Hi, Don't worry about the test numbers sounding high. Whatever the number starts at it should decrease over time on the gluten-free diet. What a high number means is that your immune system is producing a large number of antibody cells to destroy the gluten you are eating. Your gut lining tends to be destroyed along with it. That intestinal damage can cause malabsorption of vitamins and minerals. So it's a good idea to have a test for those nutrient levels. The thing is to keep as 100% gluten free as you can because the immune system is very sensitive. So any slip-ups in your diet can cause a a flare of antibody production and damage. The antibodies don't go away in a day or two either. They can stay active for weeks to months. Doctors use the Marsh scale to rate damage to the small intestine after taking biopsy samples during an endoscopy. The endoscopy is the 2nd step in celiac diagnosis after the blood tests. Please don't stop eating gluten until all testing is completed. If you do the test results won't be accurate.
  5. Hi Gulliver, I am assuming you didn't get tested for celiac disease before going on the gluten-free diet? If true, that's unfortunate as the celiac disease antibody tests depend on having been on a regular gluten diet for up to 12 weeks. The dairy reaction is a classic celiac symptom. Celiac disease can cause damage to the villi lining the small intestine. Those villi make an enzyme that digests dairy sugar (lactose). Without the villi, there is no lactase enzyme, and no sugar breakdown. That means the gut bacteria have a big sugar rush to feed on and start making lots of feeding byproducts. Very fartilicious and bloaty. Another thing, often it seems when we go gluten-free and then start eating gluten again the symptoms are worse than before stopping gluten. The immune system is already at a high state of readiness and it just needs a little bit of gluten in the water to start a full blown attack. Recovery from celiac damage can take 18 months or longer for some. Also you may be low on certain nutrients like vitamins and minerals that your body and brain need to function well. That can cause depression, fatigue and other unpleasant symptoms. There is a sticky at the top of the Coping with section called Newbie 101, which may help some. My guess is you have celiac disease but without testing it is hard to know for sure. The reaction to sugary foods is probably dysbiosis, a fancy term for gut flora being all out of whack. There's too many bad, nasty bacteria and not enough of the helpful ones. This can happen when your gut is damaged and digestion is impaired. I hope you feel better soon.
  6. Hi Laurel, DH is diagnosed by taking a small biopsy sample of skin next to (but not on) a skin lesion. You can go to a dermatologist for testing. You don't need an endoscopy to test for DH. DH is a presentation of celiac where the antibodies attack the skin. Some of us have additional food intolerances beyond just gluten. There is a possibility that the longer we have uncontrolled irritation/inflammation in our GI tract, the more foods we can become intolerant to. https://duckduckgo.com/?q=dermatologist+celiac+in+massachusetts+today&t=h_&ia=web
  7. You need to be eating gluten for the tests to be accurate. So don't stop eating it before all testing is done. There are members on the forum who test positive on just one of the antibody tests. So you might test positive if they would give you the complete celiac panel, but it sounds like they won't. Many doctors don't seem to understand the basics of celiac disease and give poor advice about testing, judging from the multiple stories on this forum. There is a topic called Newbie 101 stickied at the top of the Coping With forum section. Check there for more info.
  8. Did you doctor test your for celiac disease? If not you should get tested right away, as the testing is not accurate if you have been gluten-free for long.
  9. Interesting article! I imagine there are a lot of people out there taking olmesartan who would benefit from reading it.
  10. Hi Aquaguy, It's good that your symptoms improved from going gluten-free. That's great to have a diet based solution to a health problem. I think your stool symptoms could be caused by inflammation in the gut IMHO. It could be celiac disease causing your symptoms but could be something else too. If you aren't willing to be tested then stick with the gluten-free diet and see what happens. Be aware though that it can take 18 months or more to heal from celiac disease damage, so some symptoms can linger on after going gluten-free. Malabsorption of nutrients is a common problem for people with celiac disease. In celiac disease the immune system attacks the villi lining the small intestine and that damage interferes with the ability to absorb vitamins and minerals etc. This article discusses vitamins that people with celiac tend to be low on. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820055/ This one talks about nutrients that vegetarians tend to be low on. https://www.healthline.com/nutrition/7-supplements-for-vegans#section8 You can see there are some common nutrient deficiencies for the two groups. So if you are vegetarian and have celiac disease you have a double whammy against your nutrient levels. So supplements may be helpful.
  11. Hi Lacylou, If you haven't been gluten-free for very long, you should get the blood tests done ASAP. The antibodies in the bloodstream decline when we go gluten-free and the tests become inaccurate or even useless eventually. Anxiety is symptom some people get from celiac damage. It may be related to deficiencies in vitamins or even gluten ataxia symptoms. Some of the B vitamins are used by nerve cells and they can't function at their best when the vitamin isn't available. Celiac disease can cause poor absorption of vitamins and minerals due to gut damage.
  12. Hi Filmnut, Some people want the diagnosis, but to others it doesn't matter. I am not officially diagnosed myself, but I know how gluten affects me and am not willing to go through the full diagnostic process. I know I can safely eat gluten foods, so there's no point in setting my health back just to get a DR's approval to be gluten-free which I already know I have to be.
  13. Hi Emilia, You need to eat gluten every day for 3 to 4 weeks before the endoscopy, and every day for 12 weeks before the blood tests. Your symptoms do sound like they could be caused by celiac disease, but they could be caused by another food intolerance issue too. If you look at people's signatures under their posts you'll often see multiple food intolerances listed beyond just gluten. There are also food allergies which can cause symptoms. This link lists some common food allergens, but there are more than that. https://acaai.org/allergies/types/food-allergy
  14. Hi gluten-free Hoagie, Nerve symptoms seem to be slow to resolve. It may take quite a while for them to go away. Celiac disease is an autoimmune condition. That means the bodies own immune system attacks and does damage to the body cells. It can take months for the immune system to stop attacking once it is activated. And the immune system is very sensitive and can react to very small amounts of gluten. So small slip-ups are a bad thing. If you are pretty sure your ataxia symptoms are reacting to gluten in your diet, then I would hesitate to do a gluten challenge. The damage may or may not heal, and the time for healing can be long. Possibly years long. There are multiple threads on the forum talking about gluten ataxia. It might be helpful to read through some of them.
  15. Hi Sue, https://en.wikipedia.org/wiki/Sjögren_syndrome Wiki has quite a write-up on SS. They mention ANA testing as a possible diagnostic. .... Blood tests can be done to determine if a patient has high levels of antibodies that are indicative of the condition, such as antinuclear antibody (ANA) and rheumatoid factor (because SS frequently occurs secondary to rheumatoid arthritis), which are associated with autoimmune diseases. Typical SS ANA patterns are SSA/Ro and SSB/La, of which Anti-SSB/La is far more specific; Anti-SSA/Ro is associated with numerous other autoimmune conditions, but are often present in SS. However, Anti-SSA and Anti-SSB tests are frequently not positive in SS. ... They also discuss a possible link to low estrogen levels. I do have dry eyes and mouth and throat myself at times. Mine is from a reaction to caffeine. If I drink coffee or some other caffeine drink I get the dryness. Caffeine also causes me to feel fatigued. The longer I drink it (more days) the worse the symptoms get.
  16. Hi Pericello, It does take some adjustment to get used to the new diet. Most processed foods are loaded with multiple questionable ingredients like emulsifiers, food colorings, stabilizers, flavor enhancers, etc these days. Soy is often added and also dairy and wheat or barley malt. A good rule to follow at the beginning is to not buy any food with more than 3 ingredients. That simplifies reading ingredient lists. In the USA foods labeled gluten-free have to contain less than 20 PPM gluten. So large producers will often have a testing process to verify the gluten-free status. They don't want to get sued for mislabeling a product as gluten-free. That testing process can increase prices. Not all companies do testing though. Foods like apples, oranges, sweet potatoes, eggs, etc have just one ingredient. We often refer to those type foods as whole foods here. Whole foods are generally pretty good for you vs. processed foods. For some of us it seems like we have stronger reactions to foods after going gluten-free than before. Once we start healing a reaction may be more noticeable, Another thing that happens sometimes is problems with gas and pain in the gut. Gut damage leads to gut bacteria problems and any small amount of sugar can set off gas. So things like rice may be a problem because of all the starch/carbohydrate. Carbohydrates convert to sugars in the GI system. So it can be helpful to avoid them for a while. Over here it is often helpful to check the manufacturer's web site for the gluten-free status of foods. Or call their helpline for information.
  17. I am very glad to hear you aren't a mutant! And the folic acid isn't a big problem either! Thanks for letting us know.
  18. Hi Pericello, Welcome to the forum! Celiac disease is not easy to diagnose. They have a series of antibody tests they do and then an endoscopy. But not every person with celiac disease passes the antibody testing. Some of us don't make IgA type antibodies much at all. So the standard IgA antibody tests are useless for those people. Others may show up on just the DGP IgG tests. Do you have the tests results for your celiac testing? It would be interesting to look at the tests they did and the test ranges for interpretation. The problem foods for celiacs are varied, but the main ones are wheat, rye, and barley. A small percentage also react to oats. Some of us also develop reactions to other foods like dairy, soy, nightshades etc. Often we have problems with dairy lactose at first because of the villi blunting. A good way to start the gluten-free diet is to eat only home cooked meals made from scratch. Skip the store bought gluten-free labeled goods like bread, crackers, cookies and such for 6 months or so. Eat meats, nuts, eggs, veggies and a little fruit. Avoid sugar and starchy foods. Eat a simple diet and avoid overly spicy foods. Don't eat dairy for the first several months. None of this should add a lot of cost to your food purchases. It is mostly not buying certain foods instead of adding special foods. Yes, there are actually more people with NCGS (non-celiac gluten sensitivity) than people with celiac disease. Some people with Crohn's find the gluten-free diet helpful too.
  19. Hi, It is possible to celiac disease with only one positive type of antibody. Some people only test positive on IgG or IgA, but they have celiac disease. So getting the full celiac disease test panel is a good idea. The doctors might understand the severity of your symptoms better if you recorded them on a calendar and bring that with you. A daily history of symptoms is hard to ignore when the documentation is staring you in the face. At least it should be! There are independent labs where you can get celiac testing. I think Quest does it but not sure of the test name. There is also the Biocard test kit you can buy in Canada and I think Europe. Biocard tests only IgA though.
  20. Hi Sue, It's good to do an elimination diet, but I am not sure your doctor gave you the best plan for one. Celery is one of the top food allergens in Europe. I am not in Europe but I react to celery and also parsnips. It would be better not to include any of the known common food allergens in your elimination diet IMHO. https://farrp.unl.edu/ref-sit-eu I had problems with rice for a few years also, but I can eat some rice now. I just don't eat a lot of it. It is better to troubleshot your diet first IMHO. Maybe try some really plain basic food for a while. I started my first elimination diet with just apples and salt. And added chicken, peas, broccoli etc one at a time. Each a few days apart. I've done at least 5 elimination diets over the years to find foods that cause me GI problems and other symptoms. I didn't need a doctor to do them and they helped me way more than taking pills would have. If I had taken pills to cover up my symptoms and kept eating those bad foods. I'd still be sick today and maybe worse off. Food is the best medicine someone said. It can also make us really sick if we have bad reactions to it. i don't know if you have any low minerals or vitamins? Selenium really helped me at one point.
  21. Hi Sueps, That's rough stuff for sure. I had a similar thing with a long recovery. 5 years and still didn't feel very well. It seems there are a few possibilities. You are eating something that your body reacts to. You have another condition going on. Since the food issues is something we can control and change, I'd like to think that's the cause. I don't know how you did your exclusion diet, but there is a potential gotcha depending on method. Imagine a person is reacting to carrots. They eliminate carrots from their diet for a couple months and feel better. However, imagine that some person is now also reacting to peppers. And they do the same carrot elimination diet. They haven't eliminated peppers though, only carrots. So they are carrot free for a couple months but they still feel crappy because they are continuing to eat peppers. If they had eliminated both of the problem foods at the same time, they would have felt better. The way around this multiple food sensitivity problem is to do an elimination diet differently. Instead of eliminating just a single food, instead eliminate most foods and slowly build up by slowly adding one food at a time. It's a slow process but effective.
  22. Set up your food truck about a 1/4 mile outside city limits. Maybe near a park or in a truck stop parking lot etc.
  23. That sounds nice Squirmy, sitting on the steps absorbing the vitamin D with your woofer. Sure seems like a good way to get it to me. I found a page listing RA forums that might be helpful. Maybe some sleuthing on them will turn up a clue. https://www.healthline.com/health/rheumatoid-arthritis-forums#1
  24. Lactose intolerance is fairly common in untreated celiac disease. So it is reasonable to expect it may improve after being gluten-free awhile. Soy intolerance is a different thing and there isn't any reason to expect it to go away. But then again it might. Soy is a top 8 allergen in the USA.
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