• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com 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 Celiac.com Store.

ironictruth

Advanced Members
  • Content count

    288
  • Joined

  • Last visited

  • Days Won

    1

ironictruth last won the day on October 3 2016

ironictruth had the most liked content!

Community Reputation

18 Good

About ironictruth

  • Rank
    Advanced Community Member
  1. Could be the gluten. Could also be the excess carbs and sugar. Which, if you are anything like me, you certainly have added a few things you have been missing. Try some protein when you intake gluten.
  2. Yes. Use sparingly. I was on the lowest dose prn for months, only using roughly 1 or 2 every several days. I only started taking it because 1) it was implied that my symptoms were due to anxiety and I was willing to see if they would resolve ( actually was telling nuero doc about head pressure and he said to try one. I already had). 2) I was at my wits end with not having a diagnosis and getting anxious about growing symptoms. Sometime over the summer I had duodenitis, gastritis and metabolic acidosis. I started taking the xanax, same low does, up to 3 times per day, every day shortly after. Then by fall, I was a wreck. Panic attacks, even weirder symptoms. The new symptoms that cropped up WERE cured by popping a xanax, but the old ones stayed. It clicked somehow and I realized I was going through interdose withdrawl symptoms. Even in small doses, if used long enough, it can create this. So, it took a month or more but I gradually reduced the dose and got rid of them. I still get the wacky symptoms that started all of this and get anxious about it because still no dx yet! But no more panic attacks and some of the weird symptoms I had while on it are gone. So just be careful. I hope you feel better soon.
  3. Did you go gluten free? If not, then you should be fine with your current diet. However, while you wait for an endoscopy feel free to eat your favorite pasta, donuts, cakes, breads, because you may not see them again.
  4. Teeth grinding can cause pain in the neck/muscle. I hope you get some answers soon!
  5. btw...you don't grind your teeth when you sleep do you?
  6. I have this as well. Got it after my first gluten challenge (winter of 2016), a swelling in the right neck. It started with a strange zap like sensation and slowly turned into a more chronic pain. After months, I finally begged my old primary for an ultrasound which showed up looking like Hashi's with a tiny 3 mm nodule. Only one antibody test was run and it was negative. I was diagnosed with Hashi's by an endo who never ran any bloodwork for the condition outside of what the primary care doc did, which was normal. My current local GI ordered the U/S again and the nodule has not changed much but the right side of my isthmus is 4.8 mm and the left is 2.7 mm. I also have a 2.9 cm cervical lymphnode. I was also told nodules are normal and the lymphnode is "reactive". It has been over a year now and I am STILL waiting for a new endocrinologist and/or someone to run the missing thyroid antibody test that was never run and to tell me what the hell my lymphnode is reacting too. I have an appointment in August. I may look out of county to find something soonersince my health has been declining for over a year now. I would certainly suggest you follow up with another ultrasound. And do not let yourself get lost in the system. My god I have to fight just to get consistency between docs. They never seem to communicate with each other. But do know that yes, nodules are common. And keep me posted!
  7. Was any other test listed in the panel? EMA OR DGP?
  8. Ttg 6 is the antibody involved with the brain. There have been studies on ALS symptoms being related to gluten. There is also a correlation between celiac and MS, but it is just that, a correlation. God, I read somewhere about a guy on a plane who had Celiac neurological symptoms and happened to be sitting near a physician who told him a minimum of a couple of months before they saw Improvement. if i find it, I will posit it.
  9. Celiac panel is TTG, DGP, EMA. A overall IGA should be run to make sure you are not deficient. You have positive thyroid antibodies, and, I learned this the hard way, there is a second thyroid antibody test. Although, your one is already positive. You should have all of your thyroid levels done to see how it is functioning and possibly an ultrasound. You have had in the past, or recently have, the CMV virus. It can resurface and cause symptoms or it can not. You need a celiac knowledgable GI and an endocrinologist. Do not waste time, it can take awhile to get into one. Unfortunately, you have to be on gluten for the testing. Is this your primary care doc? Because you may want a new one of those as well.
  10. I did not realize you had H. pylori as well as gastritis. This, and the ppi's may be what is going on. Are you also on antibiotics?
  11. What blood work? I find more and more reading on Here that many GIs do not run the whole panel. TTG, DGP, EMA and overall IGA. 6-8 samples for biopsy including at least one from the duodenal bulb. If you were not gluten free for long before the test, or on a challenge, the results are probably accurate and point to not having celiac. If symptoms persist, get a new GI. Do you have a gallbladder? Pancreatic enzymes been checked? A little mucous is normal. Generally we do not see it. If you are looking closely you are probably seeing things you have simply not noticed before. What are your symptoms again?
  12. You mentioned doing a neuro work up in Boston. There is also a Celiac disease Research Center At the Pediatric Hospital in Boston at Mass General. Why don't you give them a call? In fact one of the docs there is well-known. Alessio Fasano. In some of his writings he references TTG 6 which is an antibody that is associated with some neurological issues. I believe they were doing studies on schizophrenia and brain inflammation. But I have also seen studies have TTG 6 antibodies being associated with symptoms that mimic ALS. vaguely, I believe I had seen something about how there is not always intestinal damage in these cases. I also read a story somewhere I believe about Fasano meeting a child with autism who ended up having celiac disease. They put him on a gluten-free diet and he was able to regain a lot of skills. It would be nice for you to know for certain. Trust me I am going through a lot of weird symptoms myself right now and one of them is an on-and-off extreme pressure feeling in the brain. Not a headache, but more like an internaL vice squeezing. it makes my eyes feel like there's a tremendous amount of pressure behind them as well. not knowing for certain will always leave you guessing and wondering and waiting for the next moment when things are going to get worse. at least if you have some reassurance diagnostically he may be more comfortable dealing with the strange symptoms as they come. I would definitely encourage you to call.
  13. Hugs. I wish I had advice. Can you do nutrition drinks? Are you absolutely positive no gluten is sneaking in through your meds or through a weird ingredient listed in your food? Let us know your results. More hugs.
  14. Marsh is a scoring system for degree of damage to intestinal villi. Keep us posted on the results!
  15. You did not have the whole celiac panel. DGP and EMA should be tested. The PPI can cause a lot of bathroom trouble. PPI's can interfere with digestion as well. Do they have you on a plan to taper off?