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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About brookevale

  • Rank
    New Community Member
  • Birthday 09/30/1969

Profile Information

  • Gender Female
  • Interests Diagnosed with Sphincter of Oddi Dysfunction with pancreatitis flares. Diagnosed with celiac genetic marker but negative for blood antibodies and sprue.
  • Location Albany, NY
  1. There is most definitely a connection with probiotics and histamine or something to do with the liver's detoxification pathways. I will preface this by saying I have had fluoroquinolone toxicity syndrome (floxing) from Levaquin for over two years. I have severe bodywide damage, especially neurological. The first few months of floxing I had severe multiple chemical sensitivities, but went away after a few months. I also have a pre-existing pancreatic biliary disorder and coupled with the floxing's damage to my GI tract my doctor wanted me to try Align a few months ago. Within a few days I couldn't clean my house due to the smell of the chemicals (even the natural stuff), forget standing near someone with perfume on, and I couldn't even stand in a room with new carpet. I went off the Align and my symptoms improved. I then tried Culturelle and immediately couldn't stand chemicals in any form. Went off that and improved. Went on a hypoallergenic "clean" probiotic by Klare Labs called Vital 10. I was ok for a few days, then very mild chemical sensitivities began. After a week or so my nails started lifting from the nail beds and I could barely breathe from simple hand soap or shampoo. I have gone off these but am yet to fully recover.    All that being said, there is most definitely an issue with probiotics causing histamine issues. I may be one case report, but that's enough for me. I do not believe probiotics are for everyone. I am done with them and will be happier all the same. 
  2. I have itching under the skin. I can't figure out the triggers. But, I do get worse if I take a probiotic, get dehydrated, drink coffee--even decaf, and chew Nicorette gum (which I've pretty much quit. It is so annoying. It's like a burning itching all over. I have neuropathy too so sometimes I wonder if it's a nerve reaction like paresthesia. 
  3. Student 314,   What ever became of your digestive issues. I have the identical thing going on. I had strep, was given antibiotics, and have had diarrhea, nausea, anxiety, no appetite for over 2 weeks. I too feel like something is off. Please let me know how things turned out. I need some hope!   Thanks, Brooke
  4. Hi,   Since I had major abdominal surgery in October, followed by a sepsis incident where I was administered Levaquin and steroids in ICU, my vitamin b blood levels have been high--over the maximum range. My b1, b2, b6, b9 (folate), and b12 are all high. None of my doctors can figure it out. I've read that high levels are abnormal as b vitamins are water soluble and should go right through me. Plus, I don't supplement with vitamins. I also read that high blood levels can actually mean my body isn't metabolizing b vitamins correctly and I could have deficiencies. I have had terrible nerve and joint pain since then as well that I never had before. I keep coming up negative for celiac antibodies and sprue but have genetic marker for celiac. I try to go completely gluten free but will be honest that I haven't been great about it. I also have severe intolerances to dairy and fructose. Anyone have experience with this? Thanks.
  5. Hi Everyone, I hope this message finds you all doing well. Sorry I haven't posted in a while. I am replying to this post rather late as I have been getting some resolution to my 17 month long quest for answers. Back in October 2011, I tested positive for the celiac genetic marker, but negative for the antibodies and sprue. So, GI doctor says I don't have celiac. I went gluten free for nearly a year while I was very ill. It never made a difference for how I felt because I always felt like crap. I started eating gluten again back in August. I still have negative celiac blood tests. Not sure what to do/think. But, I do know beyond a shadow of a doubt that I have casein intolerance. I don't know what to think: do I have celiac or not??? But, really, I wanted to provide an update of how I was finally diagnosed, though it took a year! The last time I posted I was still searching for a diagnosis and was starving to do death, but had gotten feeding tubes. The tube became a whole other set of issues. The j tube part that was supposed to stay in the small intestine kept migrating into my duodenum and stomach. I had to be hospitalized to have it replaced five times in two months. Also, none of the formulas agreed with me.It took two months of insisting to docs the headaches were the result of the formula and could be the casein. Once they finally changed to a casein-free formula, no more headaches! By August I was able to get up to 109 pounds and flew back to Minnesota to have the ERCP test. I was FINALLY diagnosed with Sphincter of Oddi Dysfunction (SOD)! After a year of searching, I finally found my problem. The Minnesota doctor also performed sphincterotomies (cutting) of my pancreatic and biliary sphincters. Unfortunately I was one of the unlucky few who ended up with acute pancreatitis after the ERCP procedure. I also developed an e-coli blood infection and came very close to dying, ending up in ICU. After a week, I went home only to end up back in the hospital for nearly a week waiting to have my feeding tube replaced again because it had kinked. I found some relief for a good four-six weeks. Then I was hospitalized and had to have my temporary stents removed. Immediately, I returned to my original symptoms. While in that hospital, I met a surgeon who suggested a more permanent solution--a transduodenal sphincteroplasty, where the pancreatic and biliary sphincters are permanently sewed open to the duodenum. On October 3, 2012, I had open abdominal surgery for the sphincteroplasty. I ended up with a life-threatening infection, nearly dying again, and other issues. I was in the hospital for 4 weeks. It is February 10, 2013. I have been able to maintain my weight on my own--first time in 17 months and three weeks ago had the feeding tubes removed. My nausea is manageable. I don't vomit anymore or feel like I have a massive hangover every day I wake up. Also, my abdominal pain has been manageable. I don't need to take as many prescription pancreatic enzymes anymore, but still get some pancreatic discomfort and pain. The severe fatigue and brain fog after eating has improved as well. My biggest problem is that I have developed nerve, muscle, and joint pain two months ago that I never had before the surgery. It is worse after I eat and when I wake up--especially after eating even miniscule amounts of casein protein and some other proteins and sugars. I see a neurologist next week. I started eating gluten again in August, which I think I need to stop doing.
  6. I realized after elimination that high levels of casein or sodium caseinate gave me splitting headaches. I stopped dairy altogether. I recently tried eating dairy again and although I don't get headaches, I have been having horrible neuropathy, muscle and joint pain. I am a very complicated case--have sphincter of oddi dysfunction (SOD), which I had surgery for. Ever since about two months after the surgery I've been getting this pain for the first time in my life. I tested positive for the celiac genetic marker, but negative for the antibodies and sprue. So, GI doctor says I don't have celiac. I went gluten free for nearly a year while I was very ill with SOD. It never made a difference for how I felt because I always felt like crap. I started eating gluten again back in August. I still have negative celiac blood tests. Not sure what to do/think. But, I do know beyond a shadow of a doubt that I have casein intolerance.
  7. Good Gi In Albany Ny Area?

    I have had no luck with Albany doctors, and have had to trek out to Minnesota for specialized GI care. If this isn't possible for you, I am hearing good things about the Saratoga group. My home-base GI team is at Albany Med now. They are good, it just depends who you get. I saw Dr. Sood the other day and he seems pretty good.
  8. Hi Everyone, Sorry I haven't posted in a while. I will start off by reporting out that the abdominal pain I was having that started this post goes away if I take prescribed pancreatic enzymes. Chronic pancreatitis has been ruled out, but there is something going on with my pancreatic duct. So, the pain I was having under my sternum was related to that and not celiac. I have been through hell since my last post. I am still gluten free, but it is apparent my GI problems go way beyond celiac disease. I am now with Albany Med's GI group. They don't think I have celiac, just the genetic marker. I am starting to agree with them as my symptoms never change regardless if I "slip" and eat gluten. My weight plummeted to 95 lbs in May and I had lost almost all of my muscle mass. I was mentally incapable of working anymore and felt like the walking dead. I went out to the University of Minnesota to see Dr. Martin Freeman, a nationally-recognized pancreatic/biliary specialist. He was going to do an ERCP, but couldn't in good conscience due to the risks and how emaciated I became. He couldn't believe I was allowed to get this bad. Long story short, he ended up doing an endoscopic ultrasound and there were findings with my bile and pancreatic ducts (Albany Gastroenterology did an EUS and found nothing--figures). Dr. Freeman wrote up a recommendation that I get a G/J feeding tube immediately when I get home. It took me two and a half weeks to find a doctor who would agree to this! Unbelievable how we can be left to suffer and nearly die. The feedings and formula haven't been a perfect process, but I am happy to say I am up to 106 lbs, don't look like a white zombie, and can function physically and mentally. I still eat a little during the day, but not much as eating still causes me extreme fatigue and nausea. I am headed back to Minnesota to see Dr. Freeman in August for an MRCP w/Secretin and an ERCP with sphincter of oddi manometry test. Even if I DO have celiac, there is no way I would be THIS sick for THIS long! Plus, it has now been confirmed something is definitely going on with my ducts. This has been a nightmare that started Labor Day 2011. I am truly living a Mystery Diagnosis episode. But, thankfully, I have an expert now, though halfway across the country, who is determined to figure out what is wrong with me.
  9. Good Gi In Albany Ny Area?

    Whatever you do, stay away from Albany Gastroenterology. I have received very little relief or help there. I am still seeking a good GI doc. Please let me know if Dr. Purcell works out. I have been trying to get an accurate diagnosis for four months. I have been in severe pain and have nausea every day. I was even hospitalized for five days and all I get is "whatever it is, celiac or not, it will resolve itself." I am frustrated.
  10. No bile salts at this point. I will ask the doc about that. Trying to get my fat from avocados, a little coconut, chicken, fish. Thanks and I will definitely take a peek at the GAPS diet.
  11. I have been gluten free for six weeks. Although I experienced more energy and less nausea going gluten free, I was still experiencing severe abdominal pain--so severe that only Neurontin would help relieve it. It was debilitating. I began eliminating ALL grains, nuts, seeds, crackers, and soy. The pain went away. When I tried to introduce each of these one by one, I would experience the horrible pain again. Does anyone have experience with this? I have another CAT scan scheduled this week. My doctor thinks I may have a small intestine stricture or other structural damage from celiac. Also, since I first experienced celiac symptoms, my bile issues have escalated. I haven't had a gallbladder in 13 years and there is definitely a problem with my bile. I can't tolerate fats and when I do eat fats, I get severe spasms in my right side where my gallbladder used to be. Ugggg. I am so frustrated. I am now on a paleo type diet that definitely helps. My doctor wants me to have an ERCP but I am worried about the risks. He also said he may want to go in with a laparascope to see what's going on with my small intestine. This would be surgery and I am worried about that too. I just want to feel better and be able to eat what I want (gluten free of course).
  12. Thank you everyone. I have been taking probiotics and florastor since I started getting ill. I will let everyone know what the doctor recommends tomorrow. He has said he may want to go in with a laproscope to explore. I'd like to get an ERCP first to check the ducts and get a second biopsy for the celiac. I just want to feel better soon!
  13. Thank you for confirming that we do indeed feel pain--terrible pain. I have three kids and the abdominal pain I have been experiencing is off the charts. I can barely focus at work. I cry all the time as it is so intense and NOTHING helps it. My GI tells me the prilosec should work--well, it doesn't! I'm frustrated and wonder if I will ever feel normal.
  14. I have had the worst four months of my life. I became very ill four months ago--weird tingling in my back with nausea, vomiting, complete loss of appetite, severe abdominal pain, diarrhea, severe fatigue. It all started when I came down with mastitis and was prescribed Keflex (I had a baby by c-section 6 months ago). Doctors thought my illness was due to the keflex and mastitis, but the severe symptoms lasted three weeks before I was finally admitted into the hospital for five days to control my symptoms and sever malnoutrition/dehydration. Two days before being admitted to the hospital, I had an endoscopy that showed very red gastritis and bile in my stomach. Celiac biopsy was negative. Since getting out of the hospital, I have been getting better--can work on a reduced schedule and care for my baby. However, I have severe abdominal pain all around my belly button area--above and below. The pain varies from a burning pain to a feeling as though I did a thousand sit ups--bad cramping. Long story short, I came up positive for celiac in my blood tests. Since I went gluten free a month ago I have more energy and nausea is much less. I am very strict about not ingesting any gluten, dairy, tree nuts, or soy. Nothing is helping the pain. I take prilosec, zofran (for nausea), maalox, bentyl and neurontin for the pain. The neurontin helps a little, but makes me dizzy and disoriented so I can't take it until evening. Anyhow, had a colonoscopy which didn't show anything. I had my gallbladder out 13 years ago and have had pain under my right rib cage ever since (not bad enough to be debilitating or require meds). Can celiac cause this pain in my abdomen that is so severe and absolutely nothing relieves it? I feel like I'm going crazy as this pain never stops! Does anyone have experience with pain and what may help it? My GI insists I don't have celiac because of the negative biopsy. However, my primary care, chiropractor, and a surgeon I am seeing all say I have celiac because of the blood tests. I see the surgeon guy in two days and want to advocate for an ERCP or exploratory laproscopic surgery. I am sick of feeling sick and desperate!