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Newly Diagnosed And Completely Lost!
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I have been dealing with stomach pains for years. I had my gallbladder out in 2007 and it didn't help so I figured I would just deal with the pain. I finally got tired of it and saw a gastroenterologist a few weeks ago and had a scope done last Wednesday. I got the call yesterday (Friday) that my biopsy came back positive for Celiac. I am unable to see my doctor until January 25th and I just want answers now. I don't know what I am looking for or what exactly I can and can't eat. I know I am unable to eat gluten but what contains gluten?? I am a young adult and am extremely lost on where to go. Is there a website or a book that I can look at or buy? Any information would be greatly appreciated!!

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Hello, and welcome.

There are a couple of places I would recommend you start: First, Dr. Peter Green's book - Celiac Disease: A Hidden Epidemic. Secondly, the Newbie 101 thread here on this forum.

After reading these you will probably have lots of related questions, so come back here and ask them :)

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I am hoping you get well. Meal by meal figure it out.'

Here's some flowers ***

Diana

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Congratulations on finally finding out what is wrong! You're going to start feeling better, and I'm so happy for you!!! Just remember--natural, whole foods don't contain gluten. If you're ever feeling lost about what to eat, grab some fruit, a vegetable, a diary product (except some yogurts), nuts, or meats, and you'll be safe. At first, you'll want to buy substitutes for all of your "usual" food, but it's usually best to eat whole, natural foods for a while to let your body heal. Also, sometimes the gums or grains in the gluten-free substitutes can cause stomach upsets--and you don't need that!

Good luck with the diet--and welcome to the Forum!

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Hello, and welcome.

There are a couple of places I would recommend you start: First, Dr. Peter Green's book - Celiac Disease: A Hidden Epidemic. Secondly, the Newbie 101 thread here on this forum.

After reading these you will probably have lots of related questions, so come back here and ask them :)

The Newbie 101 thread definitely helped! It also made me realize how many things contain gluten, I didn't realize there were so many! I'll have to look into finding the book since I live in a small town and know that I'll have to order it online. Thanks for the help!

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Congratulations on finally finding out what is wrong! You're going to start feeling better, and I'm so happy for you!!! Just remember--natural, whole foods don't contain gluten. If you're ever feeling lost about what to eat, grab some fruit, a vegetable, a diary product (except some yogurts), nuts, or meats, and you'll be safe. At first, you'll want to buy substitutes for all of your "usual" food, but it's usually best to eat whole, natural foods for a while to let your body heal. Also, sometimes the gums or grains in the gluten-free substitutes can cause stomach upsets--and you don't need that!

Good luck with the diet--and welcome to the Forum!

Thank you! I didn't realize how many things contain gluten! Honestly before I got my results I was thinking this whole gluten free thing wouldn't be too difficult. However after I got the actual diagnosis I realize that this is going to be a lot more difficult than I thought. I love baking and hope to go to Culinary school and open my own bakery one day but that seems like it is going to be complicated now. /:

Once again thank you for your help!

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Complicated? Only in the beginning! Gluten-free bakeries are extremely popular these days--you could end up with a very successful enterprise!

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I know how overwhelming the gluten free diet can be in the beginning. All of us here had a beginning. I have been gluten free for almost six years, and I promise, it gets much easier.

All I want to do right now is encourage you because I remember the frustration and, yes, fright, that I would never be able to enjoy food, eat with my friends, cook for family... and a host of other things.

You are in the right place at Celiac.com. These people helped me soooo much. Ask away. Someone here will be able to answer you. One word of caution... look at the dates on the threads. Some are years old and totally out of date.

Use common sense. Read all labels. Eat a lot of fresh foods (they taste better, anyway). Rye and barley are not such a problem as they are very limited in their uses. Wheat, however, turns up in the darndest places. Stay vigilant. You have friends here who will cyberly (new word) hold your hand all the way.

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Complicated? Only in the beginning! Gluten-free bakeries are extremely popular these days--you could end up with a very successful enterprise!

Yes, please!!! :) :)

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Stick with whole foods, not only are they cheaper, but they are better for you.

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    • 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?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
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