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Found 34 results

  1. Hi Im new here. I've been suffering from GERD and IBS for past two years. I have done several courses of different medicines including PPIs to no avail. I have been researching on celiac desease and gluten sensitivity for past few weeks and out of curiosity I took the tTG and DGP antibodies test. My results are as follows, tTG-igA: 8.29 U/ml tTG-igG: 20.0 U/ml normal: values less than 12 U/ml equivocal: values between 12 -18 U/ml positive: values greater than than 18 U/ml ------------------------------------------------------------------------------------------ DGP-igA: 21.7 AU/ml DGP-igG: 14.75 AU/ml normal: values less than 15 AU/ml equivocal: values between 15-30 AU/ml positive: values greater than than 30 AU/ml ------------------------------------------------------------------------------------------ so basically my tTG-igG is positive and DGP-igA is equivocal. how would this result be interpreted?
  2. Both of my sons (7 and 8) were diagnosed three and a half years ago. We removed gluten completely from our home, including remodeling the kitchen, dining room, and living room. Replaced all dishes, pans, etc... We test things from time to time to makes sure no CC happens. Husband and I even eat gluten free outside the home so we don't bring home any crumbs. Sons have not eaten out in over three years. Youngest has all bloodwork come back to normal/safe ranges. Oldest still has never had Transglutaminase IgA get below 20. Had another endoscopy done in March and intestines/villi all healed. He had complete atrophy at time of diagnosis. GI says he's not getting glutened, but no explanation for his high TTG. We went the alternative medicine route for the last year, eliminated quite a bit, including gluten free oats, hoping for a reset for his body. It didn't help bring down his numbers. Only buy products, food and supplements, that are made in gluten free facilities, or have safe practices to prevent CC. Very little processed food in general. His March bloodwork showed his TTG IgA was at 43.3. At time of diagnosis it was >235.10. He has been tested every 3-6 months since diagnosis. Has done T4, free twice, first in 2016 - 1.1, second this past March - 1.4. TSH in 2016 - 2.273, March - 1.826. No deficiencies except Vitamin D, so he is back on a supplement. Random glucose test in good range - 86mg So my question is... what could be causing his IgA to not come down? I've read on here people suggest thyroid and diabetes issues, but he gets tested for that as you see above.
  3. Hi there, I am new to this and have a couple questions, my 14 yr old daughter has tested positive for celiacs via blood test, her TTG IgA is 234.7( apparently 15 or less is normal?) endomysial antibodies is also positive and IgA 1.4 g/L does this confirm celiacs? Is there a chance she may not have it? She has been referred for a biopsy but that could be months away. What are the chances the biopsy could be negative? really feeling for my girl at the moment, thanks
  4. As I wait (impatiently) for my biopsy results, I've been doing a lot of research about my conflicting test results (positive TTG at 11, where positive is anything over 4, and negative EMA). Everything I've been reading has said that TTG has a positive predictive value of about 90% and that EMA has a negative predictive value of 100%. So according to that, I have a 90% chance of a positive biopsy, but also a 100% chance of a negative biopsy. I also was reading a study where a positive TTG and negative EMA combo resulted in very low positive biopsy results in the study group. Thoughts? Yes, I'm going crazy waiting for my results, LOL.
  5. Jewels50

    Little C

    Suggestions please, I have been gluten free for 6 years and feel fairly confident about cross contamination, hidden gluten, my medications, toothpaste, lipstick, salad dressing, etc. I rarely eat out and when I do, it is at a restaurant that can be trusted to be thorough (well, as much as that is possible). And yet, I feel so tired, migraines, aching joints, brain fog, and words not coming out right when I talk. My GI ran many blood tests which came out normal except for low magnesium level and the presence of tTg in higher levels. When the assistant called, she began the conversation with a condescending lecture about cheating on the gluten free diet. I about lost it, but didn't. I let her know that I do not cheat and am diligent about what goes in and on my body. A follow up appointment has been made for 12 weeks out along with another intestinal biopsy. In the meantime, I am going through everything to find any hidden sources of gluten I may not be aware of. I am supposed to hear from a dietician but haven't yet. (I met with one early on in my diagnosis.) Salad dressings - any really good certified gluten-free ones? Are the vinegars used in them okay or no? I have changed my coffee and coffee maker out. I use Coffee Mate sweet Italian creamer. It states it is gluten free, but, has anyone else had problems? I have checked and rechecked my Rx pills as well as any OTC meds and supplements. I WAS eating Quaker Oats chocolate rice cakes (gluten free is stated on the packing but not certified) and suspect them; however, I stopped a couple of weeks ago and do not feel much better. (Migraine and brain fog yesterday along with joint pain). Has anyone else gone through this? What do you suggest I do? I would like to reeducate the nurse/assistant at my GI on her assumption that everyone must "cheat" and her lecture (I put in a call to my GI but was told by the nurse that she doesn't talk to patients outside of appointments 😳😳😳) In all the blood work I have had done, my tTg levels are high. Am I non responsive to the diet? Ultra sensitive? Thanks for feedback.
  6. Iron: 17 mcg/dL (Low) November 11, 2016 Ferritin: 1.8 ng/mL (Low) November 11, 2016 RBC: 4.05x10^6/uL (Low) November 11, 2016 Hemoglobin: 8.5 gm/dL (Low) November 11, 2016 Vitamin D: 25.7 ng/mL (Low) February 22, 2017 ANA Profile : February 27, 2017 FANA: Positive FANA Titer: 1:640 FANA Pattern: Homogenous Gliadin IgA: 2 units June 29, 2017 Gliadin IgG: 3 units June 29,2017 TTG Ab IgA: <1 units/mL June 29, 2017 TTG Ab IgG: <1 units/mL June 29, 2017 Immunoglobulin A: 59.1 mg/Dl (Low) July 10, 2017 Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017 Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017 Immunoglobulin E: 5 KU/L July 10,2017 My RBC and Hemoglobin have come up and are normal. My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL. When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks. My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high. My whole body hurts especially my finger joints, back , knees and really all of my joints. Going to the bathroom at least 2 times day and sometimes up to 5 times a day. Extreme fatigue, Brain fog, extremely emotional and irritable. I just went gluten free July 1, 2017 and am starting to feel better. Joints feel better, I can sleep better, my mood is better. Celiac or maybe just gluten sensitive? Any thoughts? What do my labs say about me?
  7. Hello! This is my first post. My big question is about Gliadin IgG. I was tested in 2004 and had a high positive at 64 (24 being positive). My Dr at the time told me I should cut back on gluten and diagnosed me with Sjogrens Syndrome (even though I was B12 deficient, anemic, and having such bad acid reflux that I would get sores all over the back of my throat). Recently I was diagnosed with Lupus (SLE) and asked to be tested for Celiacs. My Gliadin tests came back negative, but TtG IgG was 6 (6-9 weak positive). TtG IgA was 1.4. Tomorrow I get the endoscopy and biopsy. I'm so confused as to why I tested so high for Gliadin IgG and now it is negative. I am not gluten free. The Dr said she has no idea and they are just trying to figure it out. Ive read Celiacs does not go into remission unless you are gluten free. Does anyone know how I could have been positive 12 yrs ago and now be negative?
  8. Hi, I am hoping someone can offer some advice. I originally had a TTG IGA positive test. The number was 17.1. I was eating a lot of gluten back then. I had a biopsy, confirmed celiac disease, and have carefully been following a gluten free diet. I replaced my pots and pans, avoid cross-contamination, and only buy products that say gluten free on them. I don't eat out and I have been seeing a dietician and following their advice carefully. I never had many physical symptoms, so I can't really say they have gotten better. Today I got the results of my follow-up test after being gluten free for 7 month, and my number is now 41.4. I don't understand how the number has more than doubled. I have triple checked everything and can't see how I could possibly be getting any gluten in my diet, let alone enough to have the number increase so much. Has anyone else had this happen? Could it be a lab error? Could something else be affecting the blood test? The doctor basically just said to do better on my gluten-free diet and they would test again in six months. The problem is, I don't know what I can improve! Thanks for any and all advice!
  9. I was diagnosed with celiac 2 years ago and since have been gluten-free. When I started my ttg was 88. I just recently visited the doc because I still seem to suffer from almost daily stomach pain. My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy. The metamucil I took one day and I had such bad stomach pain and loose bowel movements I felt too miserable to try it again. I haven't tried the lactaid yet but in the past I have and didn't see much difference. Heres the other thing: I do eat out a lot. I try to stick with safe places but every now and then I play the odds. So I usually manage to get sick once a month (lately it's been more) so I went to the doc and had my ttg level tested to see if my body is still getting gluten and this is why I still feel horrible. But my levels came back at 4, so now I'm just wondering... what the heck? I'm feeling super discouraged and doomed to a life of unexplained stomach pain. The annoying part is all my dr did is give me the results. Like "oh you're continuing to improve." Ok, but I'm in paid so what's going on? No answers, ever. It seems like I get suggestions, but they never do anything and I'm so fed up with my body. I'm tired of waking up frequently wondering what I could have ate that is bothering me. I had no idea two years later I'd still be struggling. Lately the stomach pain has increased and it's daily now again. I've been taking pepto for it and it helps a bit, but I don't want to live life digging in my purse for pepto everyday. any advice or suggestions from anyone who has been through this are appreciated. I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.
  10. Happy Monday friends, I am new to this forum. I'm a 36 y/o female, and am seeing a GI doctor for bowel changes and other unsavory symptoms. I have suspected Celiac, and although the GI doctor said he didn't think it was Celiac, he ordered tests to be thorough. I have waited a few days to hear from his office regarding the results, but I received the results via email. I'm awful at this waiting game. What the HECK does this mean? I'm seeing conflicting numbers online, and I'm utterly confused. Thank you for any light you can shed on these numbers: Endomysial Antibody Iga Negative T-Transglutaminase (Ttg) Iga 5 High Ref range: 0-3 U/ml Immunoglobulin A, Qn, Serum: 224 Normal Ref Range: 87-352 mg/dL
  11. Hi all I am new to the group and extremely confused! A little background about me - I have not had a solid stool in 6 years. Yup 6 flipping years My original family doctor said it was IBS - tested for parasites etc (all negative) and told me to move on. I got a new GP and at this point it had been 4 years of solely diarrhea so he referred me to a specialist . I literally go 8-11 times a day - it's insane IMO. Anyways I received my blood results that were 2.75g/l for IGA and TTG 0.05% (for which I have no idea what this is/means) other than that it is negative? no idea how close to negative or not. I had an endo scope and a colonoscopy as well. My GI called me and said "I rarely have pathologist call me about files but I have a meeting with 2 to discuss your findings' and said my results came back essentially positive for celiac, crohn's and some colitis' and that my throat is so narrow as it is so lined with white blood cells there is a growing concern of choking. She said they are so confused as essentially I am missing an element of each disease ie crohn's while my biopsies are positive there are no ulcers visible to her - so I have an MRI in 2 weeks Celiac my blood is negative so she doesn't think it is that,,,,anyways I went and saw an allergist yesterday and he was 99% that it is celiac - he diagnosed the rash on my hands as dermatitis herpetiformis, my nail beds and being indicative to malnutrition (bumpy/brittle) and said the little silica like fat globs I describe in my stool all point to celiac any insight or able to decipher the blood test results? Sorry if this is confusing or poorly written Im soooooooooo tired! Thank you for responding/reading
  12. Hello, I developed an extremely itchy skin rash that basically has covered me head to toe a few months ago. After being told it was eczema, reaction to bug bites, scabies, chronic urticaria, finally my dermatologist mentioned DH. She did a skin biopsy but took it directly from the lesion, not adjacent to, and it came back negative. Even so, she felt clinically it looked very much like DH and had me start Dapsone and a gluten free diet. She also decided to run a full celiac blood panel and my results came back but are very confusing. Immunoglobin A, Qn Serum - 206, Range 87-352 Deamidated Gliadin Abs, IgA - 113 High, Moderate to Strong Positive >30 Deamidated Gliadin Abs, IgG - 2, Negative 0-19 tTg, IgA - <2, Negative 0-3 tTg, IgG - <2, Negative 0-5 So my Deamidated Gliadin, IgA was very high yet my tTg, IgA was negative. My doctor said that both of these tests are considered highly accurate. She still thinks it stongly points to celiac but hasn't suggested I see a GI. At this point, I've been on a gluten-free diet for about 5 weeks and I know that I would need to start eating gluten again in order to get a small intestine biopsy. Has anyone else had results similar to these? Or can anyone explain why one would be positive and another negative? I should also mention that I've been taking Prednisone for 8 weeks and I wasn't sure if that could potentially affect the results. Thanks in advance for any help/advice you can provide!
  13. Well...after almost two years of just reading the forums, I'm at my wit's end and, making my first post. I'll try to keep this part brief: April of 2011, husband's.celiac diagnosed. Our two daughters blood tested in June of 2011. Like a greek tragedy...one daughter positive, other daughter negative. Daughter with positive blood test was 15 at the time. She was tested by her general practioner, who advised that with father's diagnosis and numbers in her blood work off the charts,(not sure of number but I seem to remember hearing 134), endoscopy was a moot point. She made diagnosis, advised that she join her father on a gluten-free diet, and said she could refer a GI if we wanted. at the same time daughter is diagnosed with scoliosis. So...August of 2011 daugter sees pediatric GI doc. She would advise endoscopy, but agrees with GP that diagnosis is most probably correct. Orders additional bloodwork, and dexa scan (beause of scoliosis daignosis). Test comes back with vitamin D deficiency, calcium deficciency and osteopenia. I should probably throw in here that daughter started gluten-free diet the day she got the results of bloodwork in June. Also she and her dad had little if any symptoms before diagnosis. She has next blood work January of 2012. TTg now 18, other numbers coming down Ped.GI says were doing good keep up the good work. Adds omeprazole for her reflux. Has her taking vitamin d and calcium. May of 2012 both daughters end up with Mononucleosis. but amazingly recover pretty quickly. August 2012, daughter has more bloodwork. Vitamin D normal, TTg now up to 80! Says take multi vitamin, work harder on gluten-free diet, preventing CC etc. Even though we were not a gluten-free household, in August our other daughter left for college, and now there is only VERY LIMITED food containing gluten in the house, and I handle it really carefully. Have separate frying pans, toasters, etc. I work really hard to keep my celiacs safe. So...in January she has another round of bloodwork. This time I'm sure we will see TTg numbers back in the 18 range. Results come back...70!!. Vitamin D at 17. Ped GI nurse calls with results and advises 50,000 i.u. of vitamin D for 8-12 weeks, then retest. Asks if I want to see dietician again. I declined. Nurse calls back two days later and says they want her bloodwork and another dexa scan redone in April, and suggests thaT she may have ssecondary Auto-Immune disease or...Refractory Celiac Sprue. Well that scares the heck out of me,and Ive been searchng ever since for any cases of teenagers with little symptoms of celiac having refractory celiac sprue, and can find nothing. So finally I get to my question... Can a celiac be gluten free and the TTg numbers stay abnormlly high? My daughter has handled this diagnosis and her scoliosis with grace, and I'm really proud of how she's facing it as a teenager. I just can't imagine how she will deal with an additional diagnosis. Her general health is really quite good and the scoliosis hasn't changed. It's hard to comprehend that she could be developing Hashi's or Diabetes or Refratory Celiac Sprue when she seems as healthy as her non-celiac sister. I'm soooo discouraged any ideas will be appreciated So much for being brief
  14. I am a 28 years old guy. I was diagnosed with celiac disease 6 years back with a TTG level of greater than 200. I have been staying off wheat products since then. To be more exact, I found that I couldn't tolerate several nuts, dairy products, corn and several fruits as well. Hence, I have restricted myself to a diet of rice and pulses with vegetables and a small portion of fruit. However, there have been several lapses and I have had consumed gluten-free products that contain lactose/nuts etc over the six years. However, I haven't consumed anything that may possibly contain gluten. In spite of all that, my TTG level is still around 50. This implies that my small intestine is still inflamed, even after 6 years of staying gluten free. I have had undiagnosed celiac disease for 5 years before that. This means that my small intestine must have been inflamed for the past 11 years. Hence, I was wondering if I am at a risk of getting small intestinal cancer?
  15. I am so frustrated right now!! I have a stool test with occult blood - with celiac, a family history of stomach cancer and polyps, and a red meat based diet - also a risk factor for colon cancer. My allergist looks at it and says it's essential my GI repeat the test, this time avoiding red meat before in case it's a false positive. Of course, if it's a real positive, a colonoscopy is needed. I fax my results to my GI, a week later, I get a voice message "he says there's no need to repeat the test." Also, apparently no need for a colonoscopy either. My ttg continues to slowly increase too. We are now so meticulously gluten free that we all even shower first thing when coming home in case we have somehow picked up gluten that's getting transferred to the food. Every product - including shampoos, soap, toothpaste, cleaners, paper towels (the glue to the roll would be the issue), every little thing - is verified as gluten-free. I eat zero processed food - one BBQ sauce that is verified gluten-free both by the manufacturer and running our own test to 5 PPM. So it can't be gluten, I'm quite sure. But it's climbed from 2.8 to 7.5 slowly. Any ideas??? To me, it's most likely a second autoimmune disease, but I've had basic autoimmune tests done, and good luck convincing any doctor I need more. LOL I should also add - I haven't eaten a meal outside of my home for over a year, so that can't be it. Help!!! I'm open to ideas!!
  16. I have struggled with 'bowel issues' for a long time, colonoscopies have only elicited a diagnosis of IBS. Several years ago I went to a funcitonal medicine doctor who noted that I had 'a reaction' to gluten w/ some elevated bloodwork and recommended I not eat gluten. After 18 months, these markers decreased. Fast forward a few years later (and a few bowls of pasta, pieces of bread, etc)....my autoimmune markers are elevated again. Question though: back when I was being seen the doctor checked the 'celiac gene' of DQ2 and DQ8....I was 'negative' for both. But my tissue transglutaminase (tTG), IgA was elevated at the time. It went down when I stopped eating gluten for an amt of time. Now I checked again and it's a 10 (when the normal is 2 or below). So....can tTG be slightly elevated in the absence of the DQ2 and DQ8 genetic component? Or is 10 not even slightly but just full blown? I really don't want to get a biopsy although I know its the 'gold standard' ....
  17. My internist (for over 8 years) has just refused to order the tTg and DGP for my annual follow-up. I have never had the DGP; and my tTg has never dropped below 20. He says he "never heard of the DGP and doesn't know why these tests would be recommended". I showed him a printout from the U. of Chicago Celiac Center showing these 2 tests being recommended for annual follow-up. I'm shocked, confused, frustrated, and angry. He knows how sick I continue to be and how hard I'm trying to get well. Suggestions?
  18. I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. My storyline is this (and I'll bullet point for ease) - 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. - 2013 - Immigrate back to US - symptoms continue but increase in frequency - 2014 - crappy health insurance and can't get tested - 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19) - 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality - 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. - 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20) - 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. So my questions are these: How important is the diagnosis? Do these sound like celiac elements or simply gluten sensitivity or neither? How can the TTG have been so high without villi atrophy? Is there something else I should test for or seek out?
  19. Hello everyone, I'm new here, and hoping to get feedback from more experienced celiacs. My 7yr old daughter began complaining of a sore tummy back in July. Aside from saying "mommy, my tummy hurts" she showed no signs of being in pain. She called from school one day after lunch, crying and complaining of the sore tummy, yet when she got picked up, she seemed fine, asked for a snack, and had all kinds of energy to run around and play. The complaints began to occur daily, but only Monday-Friday mornings, which had me thinking she just didn't want to go to school. School drop offs became nearly impossible, as she would cling on to me for dear life, crying and inconsolable - and once she got away with staying home, would immediately relax and appear completely fine (and no more complaints about the tummy). I took her to the doctor, and left with a pamphlet for a psychologist, thinking she is suffering from some form of anxiety. The next morning was much the same, and I gave her an ultimatum - school or blood work. Bless her little heart, she wrote me a letter saying "dear mom, here's how you can help me. Take for my blood test, and keep me home" - so off we went back to the doctor, and got a requisition for lab work. Since we weren't suspecting anything in particular, she ran several tests. The next day, I received a call with results. Her TTG came back at >250. this broke my heart. I'm glad we found out, but prior to this, I was telling her things like "there's nothing wrong with you!" (Because she would be eating, playing, running around, not looking like she was in any pain). Felt like the worst mom fail in the world. I now realize that her anxiety came from anticipating pain, and not having mom or dad around for comfort. my questions - is the high reading on her TTG enough for a definite celiac diagnosis? The doctor said she didn't think a scope would be necessary with such a high number. We have been gluten free since the day we found out. How long till we start seeing results? Because she doesn't "look" like she is in pain, I often have to ask her how her tummy is feeling (she doesn't complain often anymore). She says it still hurts, but not as bad. Her anxiety has persisted, and is preventing her from doing things she loves, like going into her dance classes. She does not want to quit, but is paralyzed when it's time to go in. Back to school was a nightmare for the first couple of weeks, but she seems to be adjusting now. We have been seeing a naturopath, who has given her a few things to help with healing, as well as anxiety, but it feels like slow progress. I just want her to be happy and healthy again. any tips on what could help? thanks in advance for listening
  20. Hi all, looking for guidance or information. I had the private md labs celiac panel run. Results came back negative for celiac. my symptoms are: bloating constipation aches in old injury sites sinusitis These symptoms are very reliable. I have been doing various eliminations for about 4 years. They occur after a single high dose of flour, eg a lot of pizza, or after 3 consecutive days of smaller doses. Thanks in advance. jesse
  21. So I'm having trouble figuring out my lab results I got today. I've been having stomach problems for a while now, and just decided to see a doctor about it. My IGG was 1.21 < .90 And my IGA was 0.19 < .90 Any help would be appreciated
  22. Hi all, I'm just starting the process of testing for celiac disease but recently switched jobs after I got the initial blood test and no longer have insurance to follow up with the results. My doctors won't even entertain a call from me to inquire. Can anyone help me understand my results and what I should do in the next three months before my new insurance kicks in? And there after? Celiac disease panel: Range 0-19 my value = 98(*) Tissue Transglutaminase IGA : Range 0-19 my value = 74(*) Gliadin Antibodies IGA: Range 0-19 my value = 9 Any insight would be greatly appreciated =)
  23. Hello, To provide a brief summary of my story, I am a 24 year old male with no previous stomach issues until recently. About 3 months ago after being very sick with a fever and being on antibiotics I came down with a cdiff infection, which I then took several antibiotics to cure. My GI doctor performed both a colonscopy and endoscopy during this time to see what was going on and found no inflammation or any indication of a problem. I started to become very frustrated with this doctor because I still had tons of symptoms I have never experienced before both stomach related (diarrhea, acid reflux, stomach pain) and systematic issues (freezing hands and feet, rashes, body aches, insomnia, depression). He refused to listen to my complaints gave me the all encompassing "IBS" diagnosis and sent me back home with antidepressant pills (which I hate and stopped after 3 weeks). I needed more answers, so I saw a second GI Doctor. This GI Doctor was great and said my problems shouldn't just be dismissed as IBS. She said my symptoms sound alot like Celiac and/or SIBO. Low and behold, I received a series of blood tests and my TTG-antibody was low positive. My hydrogen breathe test was also very high. I showed this doctor my previous endoscopy report with clear biopsy, so she suggested we repeat a biopsy to see whats going on. She also prescribed RIfaxamin for the SIBO. To fast forward to today, I have been taking the Rifamaxin (now day 5) and really feel no different. I have dabbled in different diets (low Fodmap, low gluten) and supplements (glutamine, digestive enzymes, probiotics) and little as changed. The doctor said I should NOT start a gluten free diet until biopsy report comes back in two weeks. My question is twofold: What would be the doctors reasoning for not starting gluten free now that i have received blood test and endoscopy? Also, if this biopsy is again not indicative of celiac (my big fear) what is my next step? Can I still be celiac with a low positive TTG, which I have heard is pretty accurate and specific unless I have a different autoimmune issue? I have already been tested negative for almost every autoimmune disease so I dont know what else would cause a positive TTG. Any help/insight would be greatly appreciated. Thank you!
  24. My 6 year old daughter was recently diagnosed with Celiac, (positive blood work and biopsy confirmed). I suspected Celiac for her because my brother has it. The whole family was then tested and my blood work came back positive (ttg ,72- even though by that time I was already eating a mostly gluten free diet). My question is- do I really need a biopsy to confirm diagnosis at this point? I'm having a difficult time getting in to a GP for a referral to a gastro- I'm anxious to start my gluten free diet. Though I didn't have many symptoms, I am hopeful and looking forward to improved stomach issues with the gluten-free diet. It's hard to continue eating gluten while I wait. Any thoughts on whether the biopsy seems necessary for me would be greatly appreciated
  25. Hello! I've recently taken my son, aged nearly 4, to the doctor as he has been suffering for at least a year with persistent tiredness, irritability, tummy bloating, poor appetite, very waxy ears and nail ridges. In the past month he has had at least 3 infections, and seems to take longer to get over bugs than his one year old brother. I took him to the docs because he has developed dark circles under his eyes and has had several tantrums apparently caused by exhaustion, even on days when we have done relatively little exercise. Having said that, sometimes he can have a really good day and my husband and I question whether we are being paranoid by getting him tested for illness! The doctor diagnosed anaemia after I insisted on a blood test (he said anaemia was rare in non-vegetarian children like my son) and gave us iron liquid, which we have to sneak into my son's food and drinks. My mother in law is a diagnosed coeliac, so I asked about a test for that but the doctor was reluctant to do it unless my son had been on the iron liquid for two months, improved and then relapsed into anaemia. After my son had a particularly bad week I asked to be referred for a private test, which has come back negative (ttg less than 0.1, hb slightly improved from 115 to 118 after a month on supplements). The consultant we saw is checking the IgA level, which I understand can cause a false negative if it's low, but it looks like we are going to have to traumatise my son further by having another blood test to rule out wheat, dairy and egg allergies. I suppose my question is, has anyone's child had similar symptoms and tested negative on the ttg, but improved on a gluten-free diet? It is just impossible to do anything with my son sometimes as he is so irritable, and I am concerned that when he starts school in September he will be labelled a 'problem child'. He has already been referred for special needs assessment by his preschool because he does not want to join in with many activities. I am tempted to try going gluten-free anyway to see if it makes him feel better, especially as my husband (also negative on coeliac test) has many coeliac-like symptoms. Any experience, suggestions or advice very gratefully received! I'm feeling a bit at my wits end, as you can probably tell...