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Today Is My Anniversary!
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13 posts in this topic

Today begins my third year of being healthy and gluten free. On December 31,2002 I visited the doctor for test results and was sent on my merry way with a small piece of paper and a diagnosis of Celiac Disease. Thank God for the internet or I do not think I would have made it to where I am today. I have learned so much from others with Celiac, not from Doctors. ;)

It is sort of odd that my new life began on New Years Eve day, but it was a great way to usher in a new year and new life for myself. A life filled with hope, health, and new friends because of the disease. Thank you to each of you for helping me learn. It is great to be healty and have my life back!!

-Jessica :rolleyes:

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Congratulations on 3 years gluten free! I too have learned a lot about celiac from the internet and from this board.

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;) congrats--keep up the good work and HAPPY NEW YEAR!!!!!!!!! DEB
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Congratulations on celebrating the day your life changed for the better!!! I also learned my diagnosis during the Christmas holidays (many years ago!!!) It was a message on my answering machine on Christmas Eve from the dr. giving me the diagnosis of celiac disease.....

Happy New Year!

Karen

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Yes, congratulations!

Karen, when were you diagnosed? I didn't realize that you had been on this diet for years and were STILL having symptom problems. :(

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Well, it's kind of a long story, but in a nutshell:

I was first diagnosed with celiac disease and endometriosis in my early 20's. After 1 1/2 years on the gluten-free diet with no change or improvement, that when the "diagnosis roller coaster" started. It then was "Okay, we think you have Crohns' disease.... then is was IBS......." So off the gluten-free diet I go. Years after, still no improvement, just getting worse.....

Three years ago, I finally went to another GI dr. By this time, the bloodtests were available to easily detect celiac. When the results came back, my numbers were through the roof! So back on the gluten-free diet I go again. After three years and AGAIN no improvement, that's when my GI dr. sent me down to St. Mike's to the celiac specialist (this is where he was discussing with me the strong possibility of refractory celiac......). It was only then that the collagenous colitis was discovered. So obviously, it was celiac AND collagenous colitis from the beginning, but because the collagenous colitis wasn's detected and treated, that's why there was no improvement. So when I say that I have had permament diarrhea for years, IT REALLY HAS BEEN YEARS!!!!! lol!

One thing that I consider myself very lucky for is that for all three of my pregnancies (especially the twin pregnancy), things turned out okay despite the fact that I was not on the gluten-free diet for all my child bearing years. I thank God that all my pregnancies resulted in healthy, strong babies (the boys were nine weeks early due to it being twins, but despite the fact that they both weighed only 3 1/2 lbs each, they were really quite strong from the beginning). Knowing what I know now, the outcome certainly could have been very different.... Thinking back, for my first pregnancy, I lived off of chicken on a bun. For the second pregnancy, I lived off of bread and peanut butter. For the twin pregnancy, I constantly ate chinese food with LOTS of soy sauce.....

So, after so many years of dealing with this, I really have such high hopes for 2005. I really see a light at the end of this long tunnel I have travelled.....

Happy New Year!

Karen

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:D:):P HAPPY ANNIVERSARY ANGEL

That's great! Good for you. ;)

HAPPY NEW YEAR to everyone as well.

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Oh, wow! Before, when I saw you joined in June, I just assumed that you were diagnosed around that time...you've been through a lot :(

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June is when I started taking this disease as seriously as I should have from the beginning.....

It was when the dr. started talking to me about refractory, it kind of woke me out of my indifference and into the reality that this stuff could be really serious..... That's when I started searching the internet for everything I could get my hands on and that's how I came to this site.... Thank goodness I found it!!!

Karen

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Congrats on three years!

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Thanks to all for the kind words, just wanted people to see that it CAN be done and we can be healthy and happy. It is such a struggle, but very worth it.

-Jessica :rolleyes:

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Hey! My son's "anniversary" is also Dec. 31 (but of '03). In another month he will have his tTg repeated to see if it is within normal range (last May it was still positive) but after a year gluten-free he has normal zinc, iron, and folate levels, normal B12 and calcium density; his sed rate is back in normal range, grown 3.2 inches and he has gained (from his low weight) 30 pounds! He is still only in the 25th percentile for weight, but hey, we'll take that. Happy anniversary :) Bring on the Truffle Brownies!

joanna

mom and wife to celiacs (DH has been gluten-free 6 weeks now. "I can't believe how much better I feel and I didn't even know I was sick")

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AMEN to the truffle brownies!! YUM!! We had "New Years Eve Food" at our house. Velveeta cheese with rotel, hillshire farms little smokies in sweet baby ray's bbq sauce, a cheese ball with blue diamond almond thins, and vegetable soup!! ha Great celebration.

-Jessica :rolleyes:

PS. Happy Anniversary to your son!!

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    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello 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          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
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