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      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

ironictruth

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  1. I do not have any answers for you but wanted to provide a virtual hug. H. Pylori can cause villi blunting too which i know you said she had. There are also immune deficiency disorders as well. But two copies of the gene... People are offering good advice about the time it can take to heal. Additional meds etc may cause more symptoms. As you are continuing to investigate, find something to help her reduce stress. Like buy her a pony. That was a joke. But seriously, maybe some riding lessons, yoga, whatever. My heart breaks for both of you.
  2. So, I know of a couple of studies. They are in my brain Attic somewhere but it needs some serious dusting so give me a while to find them. they do support the strong possibility of false negatives. However, eons ago I worked in a medical records department. And I can't tell you how many times I went to file a positive result on a lab that had not been initialed by a doctor, which meant it had not been seen by the doctor. someone at my doctor's office recently kept Saying that I had a positive IGG as well and I never did have a positive IGG. I only had a combined positive DGP and a couple of week positives on the IGA. at the time they were insistent it was the IGG, but the records had been sent To them. somehow someone got the incorrect record. Things do happen so I would request a copy of all testing including the genetic tests. then, as mentioned in a previous post there's always those really bizarre cases with less common genes. my brother and I are both, in essence, serology negative. Or at least TTG and ema negative. He had a lot of damage on his biopsy and I have marsh 2-3a. Finally, the older generation AGA testing, is reportedly positive in about half of folks with non-celiac gluten sensitivity. you are not required to be Gene positive to be ncgs. Both this and serology negative celiac disease articles can be found written by Umberto Volta. I am unsure if similar results occur with the DGP test as it's only been used in the state's roughly about 10 years. however, my guess would be yes. And the reason why is because obviously a number of children and adults are showing up to Celiac clinics and are being used in research who have positive DGP testing but no damage on the biopsy and some of them are Gene negative. at the same time, they are showing up to these clinics for a reason, they are having symptoms. to me, showing up to a Celiac disease Research Center with the symptoms and a positive DGP Is suggestive of the possibility that the DGP test can be positive in folks with non-celiac gluten sensitivity. I am very curious as to where it is that you're going? I'm guessing not Boston. NYC?
  3. Pin prick bleeding under the skin

    I get both petichae ( can be caused by low platelets, vitamin C deficiency, vitamin K deficiency and just generally having sensitive skin) my son got petechiae when he was young once AnD His pediatrician told us not to give him ibuprofen as often when he was sick with a fever as it would contribute to the breaking of blood vessels. and I also used to get a rash from sun exposure. I self diagnosed it as polymorphous light eruption. It only comes when it's hot outside in the summer and does not come if I wear sunscreen. this year is the first time in about 15 years I have not gotten it, it's also common for it to disappear. But it iTches a little bit and has raised bumps.
  4. Boston- dedicated gluten-free restaurants?

    Hello, I was there in April for the same reason but unfortunately cannot comment on the gluten free restaurants because I was on a gluten challenge. So I pretty much found any Italian restaurant I could every night that I was there. However, fairly close to the hospital, just a few blocks down, there is a Whole Foods grocery store tucked away in a plaza with a liquor store and a CVS Pharmacy I believe. You might want to check it out.
  5. testing update

    Yeah, so after being so unsure in the last couple of years about the diagnosis, and being told it is not celiac, I'm still a little unclear. it is always tricky for them when the TTG is not positive And the EMA is negative. other things can cause your Villo Blunting. But, in my case I have a sibling with Celiac and also genetic predisposition so it is likely is celiac. I have Dr. Fasano as my Celiac specialist and I have a visit with him at the end of the month. So what he tells me I'm going with. But we have yet to discuss the Pathology that they faxed me the other day. Yes, I now absolutely love certified gluten free black bean pasta. chock-full of iron and protein and a great way to carb refuel. I'm just glad that we caught this fairly early because if I started dropping weight while running I would have to give it up. I will keep everyone posted on the off-chance they diagnose Me with some obscure parasitic disease related to monkeys. Otherwise I will assume I will become one of the others who posts random questions about which foods from Trader Joe's I am allowed to eat and if my sunscreen is suspect.
  6. testing update

    Yeah, sometimes when I'm running I actually think of you cycling while you Were Anemic and I'm like, "I have got to be able to finish this". I should probably get my Ferritin checked again actually. it had dropped from the 70s to 20 and it's been a few months since I had it checked. I am on iron daily now so that it doesn't drop anymore. the Celiac Center immediately Faxed me a report so that I Could see it in writing because I was in disbelief. Band uniforms Aye? I guess I better get to clothing shopping for my first grader soon! Can't believe schools around the corner again.
  7. There were some folks who asked me for an updatE As they had similar Results. I'm going to give the most recent update and history first and then the surprising Semi conclusi I had my endoscopy in April with the celiac center. it showed merely an increase in IEL, no villi blunting. DGP combined assay was positive on more than one occasion but when separated out was negative including a month after the biopsy. My brother is seronegative celiac. At the poor advice of my primary care I started a gluten-free diet a little over two years ago. I then underwent a six-week gluten challenge with perfect endoscopy. I went gluten-free after the challenge but admittedly was still going out to eat and Not watching cross-contamination. Several months later due to pain and nausea, they gave me another endoscopy which showed acute dUodenitis, just inflammation, no Villi blunting. All sorts of weird s*** started happening toward the end and after the gluten challenge. prior to this I have been to the doctor a couple of times for sinus infections and suddenly I found myself Visiting cardiologists, endocrinologist, switching Primary Care docs, getting a new GI. I was lectured by multiple doctors on the fact that I did not have celiac disease and told that gluten free although Celiac is real, is also a big Fad. I tried, to no avail, to explain to these doctors that there was definitely something wrong and it wasn't in my head. It either is celiac disease and we're missing it, or there is something else that they need to find. I had no desire to become part of some gluten-free fad, I was just trying to find a way to accurately and conclusively come up with a diagnosis for my symptoms so that I can move on with my life. So, after the initial pathology report came back in April showing increase in IEL only, which is fairly nonspecific, I continueD to feel frustrated but moved on. at the very good advice of some of the folks on this Celiac Ford, I asked my local GI who can't stand me, to do a capsule endoscopy. he told me it would not show anything. It did not show anything in the small intestine but it showed gastropathy in the stomach. However, and this is where it gets good, 2 days after the pillcam when I didn't have the results yet, I got a call from the Celiac Center. Apparently they had yet to do their interpretation of my biopsy from back in April. it was just the pathologist from the hospital Who had done the initial report. The center recut the sample and found increase in IEL, crypt hyperplasia and some normal Villi and some blunted Villi with a marsh score of 2 through 3A. I have a follow-up with the GI who hates me in the middle of the month and with the Celiac specialist at the end of the month to discuss. I have a lot of questions for the Celiac specialist because of course I am still terrified that we don't have this Answer yet. but if I'm going to believe anyone, or anyone is going to put my mind at ease, it's going to be him and none of the doctors that I have met here locally. in the meantime, over the course of the last 6 months, I got off of all the stupid medications I was on and didn't need and started running. I figure as long as I can run I know I'm not dying. There are days I feel so bad that I cannot but I can always usually get up within a couple of days and go for a run. I am training for my first half marathon next month. I know I can do it because I've already done a couple 10 to 13 Mile runs. And I've run three races, tWo 5 K's And one 10k and placed all three times in my age division! running has been the best thing I can do for my mind during this time. I also figured I oughta be doing pretty darn well I actually start feeling good. plus the pain in my legs distract me from the pain in my stomach. Unintended bonus! Lol!!!
  8. Very frustrating, I know. Yes, other things can elevate TTG and DGP. It just seems strange that both were positive though. Have you had them repeated? When you say the biopsy was negative, do you have a copy? They typically only diagnose celiac in the later stages of damage. Sometimes there may be an increase in lymphocytes prior to blunting. It used to be the case that people with Celiac would suffer for years before a diagnosis. By the time folks were diagnosed they had some pretty serious damage to the intestine. now some doctors are getting better at recognizing the possibility of gluten Related Disorders and ordering the testing earlier on. this could be the case with you. I would suggest repeating the serology if doctor will be willing to do so. I am also assuming you had the genetic test done?
  9. Eosinophils or lymphocytes? Maybe both? An increase lymphocyte cells could be suspicious for potential or early celiac if the biopsy did not catch any villi damage. But those cells can increase with other things too, such as bacterial overgrowth. Best to correlate with labs. Not sure why DGP is not on the reflex? Can you get a copy of the report?
  10. The celiac center at Columbia just published a study in February on TTG negative DGP positive biopsies. They utilized both screens. It is maddening. I thought I had the answer then....nope! I think they even make a TTG/DGP screen but do not quote me on it. Yes, I am gluten free now as of late May per my specialist. I have undergone so much testing and more then one gluten challenge. I am DQ2 positive. I was thinking of restarting gluten just for the pill cam as it may be several more weeks due to insurance. But I do not think I will. Almost daily, I go through an episode of horrible pressure in my right ribs. Sitting makes it worse. I can feel it radiate through my right neck into my head. Sometimes it causes an irregular heart beat. I would swear I had an obstruction in the hepatic curve of the colon (this symptom started last summer after stabbing pains post a colonoscopy so I thought maybe it twisted). Alas, I still "go", so obviously I am not obstructed. I will keep everyone posted on the pill cam.
  11. I know, confusing. INOVA has a few different types of assays which include DGP. One is your typical DGP IGA and IGG test and another is a combined assay which is the DGP screen (combines IGA and IGG in one test). On three occasions I tested positive to the combined assay but negative on the separated IGA and IGG assays. someone on the boards here pointed me to where you could access the FDA decision summaries on these types of tests. So I looked it up and out of the several hundred people they studied only a few tested positive for the combined screen but negative on the separated screens. they were celiacs on a gluten-free diet and one was a first-degree relative. I was both on a gluten-free diet at the time and also Am A first Degree relative. So at this point I went and saw a Celiac specialist, resumed eating gluten, and re-did the testing at about 12 or 13 weeks and got the exact same result. actually the result also came back in the same range too low thirties. The cutoff is 20. waited another Two months at my primary care ran the testing with a separated essays, and they came back negative. We Did the biopsy at 4 months and there was just an increase in IEL which according to my specialist, they sometimes see in NCGS. So honestly, I have no freaking clue. At cycling lady's suggestion I asked my local GI, who is not my specialist, if we can do a pillcam. He's willing to see if the insurance will approve it. I was told to go gluten-free by my specialist though.
  12. That is awesome that you have access to the lab. AGA testing comes back positive in about half of folks with ncgs too so I think it is beneficial to have labs continue to offer it. Testing is crazy. I am positive on one type of DGP test (combined assay) but negative on the separated assay (1 point weak positive on the IGA twice). This can happen to celiacs on a gluten free diet or first degree relatives (which i am). When my biopsy showed a Marsh 1 I searched for a lab that offered the AGA to no avail. Did you have a doc's script? My state will not allow the type of lab where you go to without a doc's order. As per the AI/other disease connections I agree with you that they often accompany celiac.
  13. I had an EUS. I honestly remember the doctor jabbing the tube in when it got stuck and feeling a little strange during that part of the procedure and raising my hand and them telling me not to. I had a lot of nausea afterwards but that was just from the meds. To the best of my knowledge it doesn't carry the extreme risks that an ERCP can. Good luck!
  14. That amazes me that they are still in use at your lab. Is your lab associated with a research hospital? We could not find a lab anywhere within 2 hours of me that ran the AGA tests UNLESS they were part of a reflex cascade. If TTG and DGP were negative, it would automatically test for AGA, but ONLY if the prior were negative and they absolutely would NOT solely run the AGA as they would have to "re-caliber" (probably not the correct word) the machines to do it. I even got the same info from a celiac researcher in Italy, that it is very difficult there to find any place that is not a research lab which runs the AGA tests anymore. With regard to AGA, even healthy controls can have positive AGA but curiously it does pop up in other autoimmune conditions and diseases as well. A few examples: https://www.ncbi.nlm.nih.gov/pubmed/20545470 https://www.ncbi.nlm.nih.gov/pubmed/9553358 https://www.ncbi.nlm.nih.gov/pubmed/15244201 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3330001/
  15. Yes! I will spare you the long boring backround details but it turns out those drugs they use to knock you out can wreak havoc on your gut. A nurse helped me put 2 and 2 together after a procedure. I had a few over several months and kept getting worse. It became frustrating because it became a "symptom" that we could not figure out so it was steering us in the wrong direction. Last scope they did, we changed the meds, no issues. 1) make sure your doc knows so s/he can monitor 2) skip coffee, hot and acidic stuff, high fat foods, alcohol, uncooked veggies, sugar for a couple of weeks 3) dgl licorice. 4) geez, I thought i edited this, apologize if it went elsewhere on the boards. Running can cause intestinal bleeds too. And advil or aspirin can increase this. Go figure. So take it easy on yourself the next few weeks. 5) i have good health insurance and still had to pay bucks for the gene test but my sibling paid nothing. Worth a phone call.