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  2. I just read that sulfate might be in pickles I am allergic to sulfate so if this is true that is why I feel itchy after eating them I honestly didn't notice it till my boyfriend said people are saying pickles make them sick then I felt itchy everywhere even in my mouth I had vlasic pickles the jar said gluten free and my stomach doesn't hurt but I do itch I just ate them also maybe an hour ago
  3. I have minimal GI symptoms. If I go gluten-free, I feel better but when I eat gluten, nothing major to remark of. I'm the kind of person who likes to do one thing at a time to get clear answers, so will add in the enzymes after the 3 mos gluten-free and bloodwork test. My chiropractor has that as the next thing to add in, I'm not sure exactly which ones he planned. The ARMD changes things a bit, because no one's really heard of it starting so young from chronic poor absorption. In a way, I'd like an official diagnosis of some sort, but only if it's figured out fairly soon. The clock's ticking!
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  5. 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.
  6. Good question! Does your doctor think you are a seronegative celiac? Does he suspect something else like Crohn’s Disease? Maybe you should talk to the GI office and not your primary care physician. Let them know that you have been gluten-free. Your GI May not know this.
  7. I took a different approach. I asked my doctor to test me for deficiencies. I had none except for low ferritin (I had iron-deficiency anemia). I took an iron supplement and within three months my ferritin improved and was just in the normal range. Then, I dropped the iron supplement and focused on iron-rich foods. By my next blood draw, I was well into the normal range. I did not want to just add supplements to my diet because the best means of obtaining them is through real food. But some celiacs take a long time to heal. I had an edge from the start. I was already living with a gluten-free eater and I knew the diet well. If you need to supplement be darn sure your supplements are gluten free. Preferably (in my opinion) tested and certified gluten-free to be well under 5 ppm which is less that the FDA recommendation. Why? Because some celiacs are sensitive (and you do not know where you stand yet). Also there have been issues with raw materials be imported into the country for supplements which are not regulated the same as drugs. But then drugs are not really that well regulated either! Comparable issues with generic drugs were reported on NPR today! https://www.npr.org/sections/health-shots/2019/05/16/723545864/the-generic-drugs-youre-taking-may-not-be-as-safe-or-effective-as-you-think Research the gluten-free diet well. Know that it takes time to heal. There is no fast and easy approach. I know you probably want fast results, but based on all these thousand of posts on this forum, celiacs need plenty of time to heal on average. Personally, if I had to do it all over, I would avoid all processed foods like the plague. I think many slowed down my healing process as I had several other food intolerances that I had to address. Like Xanthan Gum found many processed gluten-free baked goods (bread) or oats. Hang in there. It does get better and easier. I promise! Questions? We are here to help.
  8. Why is even doing an endoscopy? Your blood results were negative for Celiac?
  9. Yeah! Consider ditching your doctor. He is obviously not following the American GI Association’s (or British, EU, etc.) recommendations for celiac testing. Why is that? Is he smarter than all the celiac disease experts? Damage can take a long time to heal because most people make mistakes on the gluten-free diet. It also depends on individual patients. Everyone is different. Dr. Fasano has found that some celiacs have healed in as little as two weeks (intestinal damage). If you want to be in diagnostic limboland, go for the endoscopy. If negative, you will never be able to rule out celiac disease. Blood tests? Which ones? Did you get the entire celiac panel? If my GI had ordered the screening TTG only, my diagnosis would never have been caught. I test positive to only the DGP IgA. Also, know that about 10% of celiacs are seronegative. It sounds like you were gluten free when you had the blood tests. It might have been just long enough to mess up your results if you were just developing celiac disease. Who knows? if you are stuck with your doctor (gosh, is he missing other health issues you my have?), consider remaining gluten free. Why bother with the expense of an endoscopy? It sounds like it will just benefit your GI’s pocketbook. Harsh? You are the patient and you have rights. Your doctor may not be able to know everything from medical school, but he can google it or consult with other doctors. I hope you figure it out. Research. It is your best defense. Document in writing any further communication with your doctor. https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/ https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/ https://gi.org/topics/celiac-disease/
  10. I am not a doctor, but I can share my personal experience. The only thing that I was low on was ferritin which led my GI to test me for celiac disease. I was never deficient in anything else yet I had Marsh Stage IIIB damage. I went in for a routine colonoscopy (and added an endoscopy) because I had hit 50 years old (and all my friends were getting them 😆). I had no GI issues. I have a genetic anemia, so when my hemoglobin dropped, it was blamed on my monthly menstrual cycle. But I actually had two anemias (the iron-deficiency one resolved once I went gluten free). I think my body learned to adapt to my anemias. I also lived with a gluten-free eater, so I was very gluten light for over a decade. There was no indication that I had osteoporosis until I experienced fractures.
  11. I’m scheduled for an endoscopy on June 5 and my MD says I should continue my Gluten free diet. He feels doing a challenge is “cruel” and that my endoscopy will be accurate as damage takes a long time to heal. I’ve been gluten free since mid-March, had blood tests on April 1st (negative). We’re moving forward with procedure b/c I feel so much better not eating gluten. Any thoughts on doing the endoscopy without a challenge?
  12. Would it be strange though if her vitamin D and calcium levels were normal??
  13. All of "Spicely" Brand herbs and spices are Certified Gluten Free they can be found at Whole Foods and on Amazon.
  14. This varies from person to person, common ones needed are magnesium, vitamin D, Full Spectrum B-vitamins, Iron, and in some cases others like vitamin C, K, Zinc, Calcium etc. Dosing also varies from person to person, and some people need certain sources and forms due to other complication such as sensitivities or gene issues with pathways. It will mostly be trial and error, sublingual liquid forms are normally the best. I will cover a few bases from personal experiences and suggestions and you will have to figure out from there hopefully with the guidance of a nutritionist. Magnesium Varies on our bowel habits with the form, If you do not go to the bathroom with a BM at least once a day then you have constipation and a Magnesium Citrate like Natural Vitality Calm will be best. Start with 1/4tsp (2g) and up the dose each day til you get loose stools then back it down 2g dosing to tolerance. If your bowel habits are daily or loose already just try taking Doctor's Best Magnesium Glycinate once or twice a day, the evenings are best here but can lead to very lucid dreams. Magnesium can help with anxiety, cramps, mental and nerve functions and cramps. B-Vitamins, I use Liquid Health Mega-B complex (formally Energy & Stress) 1tbsp and the Neurological Support 1tbsp twice a day before meals. B-vitamins need to be dosed spread out as they do not stay in the body. The funny thing about B-vitamins and gluten-free diets being a double-edged sword. Most American processed foods, gluten foods, and flour is they are enriched (sprayed with vitamins) with b-vitamins. While most gluten-free foods are not, top this with celiacs having absorption issues and you can see where we might need an extra boost. Another good source is KAL Nutritional Yeast, sprinkle it on stuff or use as a base for a vegan cheese sauce...you should look up the nutritional panel on it. Vitamin D, I take 1-2 drops of Bluebonnet liquid twice a day. Zinc, The suggested method to find if you need this is to get those zinc lozenges and suck on them, if your low you body lets you know by flavor normally as they will start tasting metallic when you have enough. I personally just take a daily half pill of a one I found at Walmart. Do note some claim zinc can help with withdrawal issues. Vitamin K, if you bleed easy and do not clot well then vitamin K might be needed, I get my sources from dark green veggies and have 2 servings a day. Vitamin C, varies from person to person, I can not eat fruit so I take a 500mg capsule 2-3 time a day spread out from Ester-C I find I am good on most other things but again some people require others, I also live on a diet high in nuts, seeds, cocoa, eggs, and other foods high in healthy fats, vitamins, and minerals so I have a higher then normal intake of most and have a edge and fat-soluble vitamins. Here is an interesting link I found that might give more insight into helping with withdrawal issues. https://www.optimallivingdynamics.com/blog/9-nutrients-proven-to-help-you-overcome-addiction-and-withdrawal-nutrition-recovery-vitamins-minerals-amino-acid-symptoms-supplements-diet-substance-drug-abuse-syndrome-cravings-opiate-alcoholism-food
  15. Celiac.com 05/18/2019 - Want to feel like a gourmet chef and dazzle your pickiest eaters with a simple juicy, delicious meat dish? This classic beef tenderloin is just the ticket. A little cooking twine, some salt, pepper, olive oil and butter give this beef tenderloin all the love they need. The result is a timeless classic that is also timelessly tasty, and naturally gluten-free. Ingredients: 1 (4-lb.) trimmed beef tenderloin, tied with cooking twine 4 teaspoons kosher salt 1 tablespoon coarsely ground black pepper 2 tablespoons unsalted butter 1 tablespoon avocado or olive oil Directions: Coat the beef with kosher salt, and pepper, and put it in the fridge uncovered overnight uncovered for 24 to 48 hours. This will give it a flavorful crust. Remove beef from refrigerator, and let stand at room temperature 1 hour. Heat oven to 250°F. Place beef on rack in a pan, and roast on center oven rack until a thermometer inserted in thickest portion registers 125°F for rare, 1 hour and 10 minutes to 1 hour and 30 minutes, turning midway through. When beef reaches desired temperature inside, remove it from oven, and turn on the broiler. Combine butter and avocado oil in a small saucepan, and heat over medium until butter melts. Brush meat with butter mixture, and place under the broiler until browned, turning once, about 1-2 minutes each side. Transfer to a carving board with board dressing, if desired, and let stand 15 minutes before slicing. Serve with Creamy Horseradish Sauce Gluten-Free Creamy Horseradish Sauce Ingredients: 1 cup well-drained prepared horseradish ½ cup sour cream ½ cup mayonnaise 2 tablespoons fresh squeezed lemon juice 1 teaspoon kosher salt ¼ teaspoon freshly ground black pepper 2 teaspoons Worcestershire sauce Few drops Tabasco sauce Directions: Add ingredients to a bowl, and mix well, until creamy. Serve.
  16. Hi. I am finally just one week away from my endoscopy. I will be going gluten-free that day. I only show up as low in vit d, but are there any supplements I should take when going gluten-free??? I managed 13 days before I had to go back on gluten because of my endoscopy appointment. During the 13 days I had bad withdrawl and the anxiety was terrible. Assuming I go through that again - anything else that could help? Thanks 😊
  17. Hi Krystal, Yes, the forum software sometimes shows the last post content you were working on when replying. There should be a "Clear Editor" button near the edit window you can click to get rid of that. Hopefully it shows up on your phone. Ennis_TX has a good idea there. Maybe you can try some Betaine HCL tablets with meals to improve digestion. They turn into stomach acid when mixed in water and can possibly help break down foods. So take them with a glass of water during the meal. They are definitely not the kind of pill you want to dissolve in your mouth though! I don't know if you have diaharrea frequently or not. But the big D can cause malabsorption also. Something that can help with D is taking psyillium husks with meals. You can buy psyillium in powder form of in capsules. It's fine to mix a tablespoon or 2 of psyillum husks into your veggies or soup or what not also. They can help thicken soups which is handy. If you are getting gassy try taking Altoids peppermints or peppermint tea. Peppermint relaxes smooth muscles and can make it easier to belch/burp gas out. It sounds like you have a pretty good diet already. Often newbies seem to expect they will heal from celiac damage within a week or so. I know I thought that. But reality is it can take 18 months to several years to recover. Depending on lots of factors. Sometimes people develop additional food intolerances beyond just wheat, rye and barley too. Often dairy is a problem for a few months too.
  18. The exact cause is undetermined but it only partially works. Amusingly it was a chiropractor a few years ago that pointed it out after I was already finding enzymes helped me to eat. He did test on my spine with a machine checking nerve signals, there were several low ones but the worst was around my T7 (https://binged.it/2w5rmez) that only had 15% of the nerve signals. I do have gluten ataxia with my celiac (my body attacks my nervous system and brain in response to gluten) so the theory is that the nerves were damaged to the extent it impacted my pancreas function. It also is the suspected reason I have huge glucose spikes to any carbs/sugars at all. There are also correlations to EPI and inflammatory diseases like celiac, chrons, etc. Something to look into and ask the doctor about. As to my celiac, it was oddly diagnosed in an untraditional manner about 6 years ago. I was already gluten free, and out of and unwilling to do the gluten challenge I proved my point and ate gluten in a doctors office and waited for the ataxia and vomiting to hit as a "proof of concept" sorta got them to add the note to my papers, scopes later down the line still showed damage. But then scopes years later showed celiac healed but found Ulcerative colitis, and the newest scopes showed both AI diseases healed....still some health quirks trying to get worked out but at least I am gaining weight now after 6 years.
  19. Sorry if this posts weird, my phone is grabbing all previous posts when I try to reply. It's ugly. My diet is very low on packaged/processed foods to begin with, so the move to gluten-free was not a huge issue, and isn't including a gluten-free substitute product for the most part. As for enzymes, I have been working with a chiropractor that does functional medicine and we've talked of pursuing that path next. He is the one that did all of the serum vitamin levels and laid it all bare. Going back through the sporadic vitamin testing I'd had through the years, he showed it's been like that as far as we can find. I'd had one vitamin tested at a time here and there, and the medical doctors chalked it up to a fluke since my diet was healthy. Doing them all at once showed a larger issue. Ennis_TX, is your pancreas issue the cause or effect of the celiac, or are you gluten-free without a diagnosis of celiac?
  20. Bit of thought on the malabsorption, it could have to do with the failure to break down and absorb the nutrients in food also. I have some issues linked to my pancreas not working right and have to take large amounts of digestive enzymes in ratio to my diet macros (fats, protein, carbs). Another thought is weak stomach acid not breaking down the foods completely that another of our members could inform you more on. Perhaps see if taking a digestive enzyme fitting your diet (check realzymes) can improve the breaking down and absorption of nutrients, along with sublingual supplements for ease of absorption. They also make Porcine-derived pancreas enzymes that if work could point out issues with it being related to something like EPI. Celiac is odd in that it can lead to other AI issues and secondary damage anywhere with a rampant immune system. Intestines, Skin, Nervous system, brain, etc.
  21. I think it's related to a deficiency of Essential Fatty Acids (EFA's). Celiacs often have trouble absorbing essential nutrients, especially fat based nutrients like EFA's, vitamins A, D, E and K. You might try adding healthy fats to your diet like cod liver oil, flaxseed oil, olive oil, or hemp oil (not CBD oil although that has benefits, too). Hope this helps.
  22. Celiac Disease causes malabsorption which results in malnutrition and vitamin deficiencies. Alcohol consumption causes low levels of vitamin B6 (pyridoxine). Loss of vitamin B6 (pyridoxine) will cause seizures. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4494992/ Take vitamin B6 in the form of P5P to restore your level. And quit drinking.
  23. Meat and dairy seem to be the easiest things for me to digest. I know that is the opposite of many peoples' experience. I can do essentially all veggies as long as they are cooked well. I don't do good with "woody" things.
  24. To be honest I am down to taking the Nexium every other day only once and the smallest dose. Was on the highest dose twice a day last year. It is slow, but I have other issues.....I do not take them for just GERD. My big things with digestion and that stuff in my throat/vomiting was to prevent gastroparesis and encourage stomach dumping by avoiding certain foods that trigger it (For me vinegar, and propylene glycol along with some foods). I found I needed raised doses of vitamin D and moderate magnesium also. To break my foods down 3-6x the recommended digestive enzymes in the actual ratios for my diet (Enough of each enzyme to break down the grams of each macro I eat). Food prep is a huge thing also, cooking every soft, avoiding solid, soaking nuts/seeds til they sink (2-3 days) and avoiding oily foods and animal fats. Also timing, my digestion is the strongest when I wake up from a fasted state, only time i can eat tougher food like meat, lunch I keep soft and meat free, and I found I had to stop eating after 1pm....if I eat in the evenings I vomit up stuff, heck I sometimes will vomit around 6-7pm stuff I did not digest from the morning meal.
  25. Trents (and) Ennis_Tx, I sure hope you can get off the PPIs ...long(er) term they are horrible. The step down method usually works in 6 months ...Ennis_tx has now switched from PPIs to H2 blockers ...he might be able to give you good advice. You might try some Glutamine and Turmeric also to see if it helps your GI problems...I am currently trialing turmeric for my blood sugar issues. Here is a couple good links for Glutamine and Turmeric to help GI problems. https://news.vcu.edu/article/Oral_curcumin_may_protect_gut_function https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4369670/ going low carb will help the gerd....not completely eliminate it but help minimize it. I don't know if you saw this research are not but Howard Hughes Medical Institute (HHMI) explains very well why taking PPIs long(er) term is the wrong answer. https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers Untersmayr has confirmed that taking PPIs or even other acid reducers can cause/contribute to food sensitivities. see this research entitled "Acid suppression therapy and allergic reactions" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464390/ I was actually thinking of Ennis_tx when I came across this research but it will help you too. recently (this a more expanded article) baking soda was shown to trigger off the auto-immune reaction triggered by low stomach acid. .. that I think explains well how our microvilli trigger our body to attack our villi ...when it is in an inflammatory state... https://www.sciencedaily.com/releases/2018/04/180425093745.htm I must stop for now....but if this doesn't help you understand what is going on .. then feel free to PM me and I will be glad to have a private conversation about it...but more people need to understand how low stomach acid can contribute to GI problems ...MORE not less stomach acid is needed in 90% of the situations. when you starting taking PPIs for GERD your heartburn turns into NERD aka as (bile reflux).. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html see this case study of how taking BetaineHCL treated someone's GI problems they had for 30+ years. ..replacing low stomach with replacement acid the body was no longer producing. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/ I hope this is helpful but it is not medical advice. Posterboy,
  26. Ennis_Tx, You might try some turmeric ..I ran across this recently after celic.com featured an article on turmeric. https://mentalhealthdaily.com/2015/12/16/curcumin-for-depression-an-effective-treatment/ I have been trying it my blood sugar problems lately... and turmeric with 95% curcuminoids seem to work well. But I can't say if it will continue working ...most herbs I have taken usually only work temporarily before fading off... until I take it a little longer... and why I prefer to find a vitamin/nutrient if I can that will do the same thing.... and the benefit be long(er) term... but early results as they say is promising....it can be consumed as a tea too if that is more convenient. I hope this is helpful but it is not medical advice. Posterboy,
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