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Showing results for tags 'refractory celiac'.
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Hermom posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)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
Alok posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count, Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet. Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok
AnnaChristine18 posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand. My symptoms started December 7th 2013. They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help. December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure." I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life... I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! Summer is coming up but it won't be any summer for me. I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure. I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change. Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I now have an extremely healthy diet and haven't even sipped a glass of wine in 4 months. But I feel and look horrible. It was supposed to be over at Gluten free. I feel WORSE than I did before. I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal. What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live. Is it ibs? Refractory Celiac? It doesn't make any sense!!!
Katharine25 posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI am hoping that some of you can help me figure out what's going on. I was diagnosed with Celiac Disease 6 years ago ( I am now 20 years old). Back then my symptoms were mainly gastrointestinal, such as bloating, gas, diarrehea, and very bad stomach cramps. I felt extremely sick and got to the point that I was afraid to eat anything. I lost almost 15 pounds within 6 months. After finding out I had celiac, all of these symptoms went away and I regained most of the weight I lost. I felt a lot better. For the past year, however, I have been experiencing incredible fatigue and joint pain. The pain started in my hands but recently it has spread to nearly every joint in my body and the fatigue has worsened. I went to a rheumatologist who did some test- all of which were negative. She had a strong feeling it was connected to celiac disease. I went back to the GI and he did another endoscopy. Since I get so sick from eating gluten he decided it was best if I remain gluten-free and he would see if a.) I am doing a good job on the diet and/or b.) if I have refractory celiac. I had the endoscopy done last week and I am anxiously awaiting for the results. I am very strict with my diet and do no cheating. Does refractory celiac disease sound like a real possibility? I was just wondering if anyone else has experienced these symptoms and if they have figured out what it is? I am becoming so frustrated because none of the doctors seem to know why I feel this awful. Could this be related to Celiac? I would appreciate any feedback! Thanks!!