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Endoscopy Confirmed My Celiac Diagnosis Today


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#1 Raywuwei

 
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Posted 11 May 2012 - 06:39 PM

I am a writer and I find that I hardly have words to describe how this moment in time feels.

I had my endoscopy and biopsy today. It was my first time ever being put under. I've never had any major health issues, nor have any of my close family members, so any experience with illness feels dramatic and strange to me. I know I don't have cancer or anything, but I am shocked to see how detached the doctors and nurses have been on this journey so far. This may not be an extremely life threatening "disease" but it is still a very big life change. Literally, a paradigm shift.

I knew that my small intestine would show the signs of celiac damage, but I wasn't quite prepared to see the pictures right after waking up from the anesthesia. I hardly even realize that the procedure was over when the nurse put the papers in my hands. My mom was at my side and knew what questions to ask for me, and I was grateful for that, but I didn't know what to say when she asked me how I felt. "Are you mad? Scared? Nervous?" I don't know what I am. All I can think of are the dates that people use as their signatures on this website. "Gluten free since Oct. 9th, 2001" and things like that. And now I have my dates, too. Today is the day I stopped eating gluten. Yesterday was the last day I ate ravioli and drank my favorite amber beer.

Its all just so... strange!
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4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

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#2 psawyer

 
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Posted 11 May 2012 - 06:58 PM

Welcome to our community. Today is the beginning of your gluten-free, healthy life. You will have lots of questions. The members here will have lots of answers for you.

When I went gluten-free in 2000, gluten-free beer did not yet exist. There were very limited options for pasta. Today it is very different. There are so many gluten-free foods available that while still challenging at times, the diet is not a hardship. :)
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 rosetapper23

 
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Posted 11 May 2012 - 07:47 PM

Welcome! And please don't worry about the ravioli and beer--there are some excellent gluten-free products that taste just like the gluteny ones. I love the gluten-free cheese ravioli I purchase from Imori, and there are many gluten-free beers that I like as much--if not more--than the ones containing barley or wheat. I especially like Redbridge. You'll find new favorites!
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#4 mushroom

 
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Posted 11 May 2012 - 09:13 PM

I suppose if it comes as a shock, you are shocked and at a loss for words. If it comes as a relief that there is a reason for all these symptoms no one believed in, it is not so much a shock as a relief -- that there really is a reason that you feel this way and react the way you do. And a reason to not keep on doing that any more :P For me, it was just a decision that there had to be a better way of living and that maybe this was the answer. Little did I know how much of an answer it was, that we are what we eat and that everything we eat can be reflected in our wellbeing. I hope you will find it is not too much of a shock to your system, to adapt to the paradigm shift, to forget what you knew about food before, and start looking at it in a different way.

For each of us that way is different. You will have to find your own way through the maze of what your body thrives on / likes / tolerates, and what it absolutely rejects. You will probably find initially that you have problems with lactose (milk, cream, ice cream -- maybe even cheese, yogurt, butter, etc.,; this will have to be trial and error). You may even find out that other foods initially bother you but do not be too alarmed since most of these initial intolerances go away once you have been gluten free and done some healing. And you must not be impatient; it is a slow process, this healing from gluten. You may even find that you go through a period of withdrawal where you feel worse (sorry for being the joy germ) but it does not last long; it is like quitting smoking since gluten does have some opioid reactions in the brain.

Welcome to our not-so-little club and let us know how we can help you. We promise there is no hazing or initiation rites to join. :) Make yourself at home, do some reading, and ask any questions that arise.
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#5 peaches987

 
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Posted 11 May 2012 - 11:05 PM

Reywuwei, I saw an echo of my own thoughts in your post, so thank you for putting your thoughts into words so succinctly! Small wonder you're a writer!

I'm new to posting here as well, though I've had my diagnosis since last summer. So nearly a year now. The shock of having this little shadow called celiac trailing you, and knowing that it will for the rest of your life---took a solid few months for me to adjust to.

I know at first it's daunting. At least it was for me. Mostly I've been entirely healthy my whole life and suddenly this was something that made me feel...well, frustrated and vulnerable. Like my body had betrayed me. But it will become the new 'normal' for you, and I've come to the point myself where I feel empowered by the realization that if I stick to the diet, I'm just helping myself. I could list a dozen ways in which my health has improved over the last year.

It also helps when you stock your kitchen full of gluten free food, and have a stash of stuff you can just grab without worrying about. Eventually I think everyone with celiac gets used to examining a label before you buy a product. It becomes an automatic habit. I look at everything. EVERYTHING. Eventually (hopefully) you'll start to feel like it's not such a burden. Calling up a company's customer service line has become 'de rigour' for me. I know I've been surprised how easy it is to get in contact with companies to find out their gluten free list. I now have a list of go-to products and recipes that I know are gluten free now, and as you navigate the grocery store you'll find there's probably a row of gluten free food to choose from at most major grocery chains. Regarding your pasta comment: there's actually a great Italian gluten free pasta called Bionaturae (I know it sounds like some genetically modefied tomato farm! I don't get the name but the pasta's great). You'll learn how to find versions of what you're craving in the gluten free aisle, and which gluten free cookies taste brilliant and which ones taste like cardboard (there are way more of the former than the latter, I think most of us would say!)

Perhaps it's just a year of gluten free eating talking, but I can't even tell the difference between gluten free cookies and what the old ones tasted like anymore---except for the texture, of course. I had to laugh telling my parents that in 20 years time, I might not even remember what gluten products taste like--though who knows if that's true. There are still things I mourn. Really excellent bread and the way it tastes when you toast it, for one. And I still haven't been able to navigate ordering painlessly at a restaurant (I loathe when having to eat out now, which is sad. Eating at a table full of strangers and having to explain why you're eating different food, asking for the 'allergy menu'. Seeing the blank look on a waiter's face when you explain what cross contamination is). But honestly, despite all that, I find this is normal for me now, and I feel healthier and stronger. Good luck learning about how to cope, and remember: just because it's gluten free doesn't mean it has to be tasteless.
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#6 Di2011

 
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Posted 12 May 2012 - 12:23 AM

What a lovely articulate bunch you all are!! Writing was never my thing :(
I work from the technical/maths brain so here is my list:
1. Drink lots of water. You'll need to as your body adapts to its new eating habits. Keeps you feeling full when it seems that only a slice or two of bread or pasta will do the job.
2. Lots of fruit and veg. In the early days I couldn't tolerate much raw so keep eating lots of cooked veg and introduce the raw gradually. Less 'full flavour' fruits to begin with. a little banana and apple if fruit/acids get to you early on.
3. There are lots of posts on here about multi-vitamins, probiotics etc. Read as much as you can. I don't use them since my diet is nearly 100% meat/fruit/veg/cheese/yogurt (a good/natural one) and my budget is tight.
4. Try not to overdo the processed gluten-free foods in these early days. They aren't necessarily what your body needs to heal but are useful as bulk and avoiding the psych issues with the change in eating habits. Other posters go for the three meals a day with lots of gluten free products, and then gluten-free snacks on top. I would not recommend it. We tend to hear from these people and their progress is slow. Try one at a time (and try it three times) to see how your system handles it.

Do you want to tell us how you came to get the endoscopy? Often this community can help more specifically when we know your symptoms. It is a hard one to deal with.. sharing your gastro issues online is not something any of us ever imagines :) But you'd be surprised how much more help you will get if you do. Just a thought. Think about it.
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#7 Raywuwei

 
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Posted 12 May 2012 - 07:17 PM

It was definitely a shock for me, as I have been physically active and maintained a healthy diet my whole life. I had almost no symptoms, so luckily I did not have to undergo a drawn-out journey to come to this diagnosis. At the same time, it feels like that much more of an abrupt and unreal change. I think I'll poke around the forums and try to seek out some more people who had fewer symptoms.

Thank you so very much for you kind words of welcome, they're greatly appreciated :)
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4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

#8 Raywuwei

 
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Posted 12 May 2012 - 07:26 PM

And I still haven't been able to navigate ordering painlessly at a restaurant (I loathe when having to eat out now, which is sad. Eating at a table full of strangers and having to explain why you're eating different food, asking for the 'allergy menu'. Seeing the blank look on a waiter's face when you explain what cross contamination is).


This is what I think I am struggling with the most. I am aware of how the service industry treats people with allergies because my boyfriend of 4 years has a severe allergy to sunflower seeds (much more difficult to deal with than gluten because it is not known in pop culture). I know that waiters are pained to have to read a label on a bag, I know they will lie to you, roll their eyes at you, take for ever to wait on you in fear that you'll ask more questions. I fear it will be impossible to ask a Spanish speaking chef to change his gloves after handling a flour tortilla in order to make my corn tortilla taco.

Do you have to avoid establishments that look like they wont understand? Are you very strict about cross contamination, or is it something that you can fudge on if you're symptoms are not severe?

Of course I will troll some more threads to find answers to these questions as well, but I greatly appreciate your response. Honestly, I didn't think that anyone would read my post at all, and it just warmed my heart to see everyone who pitched in. Thank goodness for the internet!!
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4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

#9 Raywuwei

 
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Posted 12 May 2012 - 07:47 PM

That is great information, thank you!! I was particularly intrigued by your note about raw vs. cooked foods. I noticed that I had some trouble with raw bell peppers in recent weeks. I was planning on eating as much "naturally guten free foods" as possible, as we are all instructed to do, but was fearing the bloating that I had with some raw veggies. I read more into that!

Do you want to tell us how you came to get the endoscopy? Often this community can help more specifically when we know your symptoms. It is a hard one to deal with.. sharing your gastro issues online is not something any of us ever imagines :) But you'd be surprised how much more help you will get if you do. Just a thought. Think about it.


I'm not afraid to talk about my symptoms here, though I do joke that celiac is probably the least glamorous disease I can think of ;) My bio has the info about how I came to get my celiac diagnosis, but in short, I hadn't really had any noticeable symptoms until early April. I think that somehow my symptoms were stress induced. Within three weeks, pain in my upper abdomen around my diaphragm increased to the point that I skipped work and made a quick appointment at a Zoom Care center. They're not specialists, but the pain I was having sounded like an ulcer to them, so I saw a GI specialist. The GI specialist took some blood samples for the ulcer that all came back negative. I thank my lucky stars that he also ran the test for wheat allergy and found that I was "through the roof" positive for celiac. (I have a print out of the labs but I don't understand how to read them yet).

I took Prilosec for 10 days and the upper abdominal stomach pain ceased. It was 2 weeks before I could get the endoscopy and during that time I began to see that my stomach consistently bloated after eating a large amount of gluten. I am happy to now be on the right track and figuring things out! Thanks again for your help!!
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4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

#10 Mnicole1981

 
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Posted 13 May 2012 - 04:35 AM

That is great information, thank you!! I was particularly intrigued by your note about raw vs. cooked foods. I noticed that I had some trouble with raw bell peppers in recent weeks. I was planning on eating as much "naturally guten free foods" as possible, as we are all instructed to do, but was fearing the bloating that I had with some raw veggies. I read more into that!



I'm not afraid to talk about my symptoms here, though I do joke that celiac is probably the least glamorous disease I can think of ;) My bio has the info about how I came to get my celiac diagnosis, but in short, I hadn't really had any noticeable symptoms until early April. I think that somehow my symptoms were stress induced. Within three weeks, pain in my upper abdomen around my diaphragm increased to the point that I skipped work and made a quick appointment at a Zoom Care center. They're not specialists, but the pain I was having sounded like an ulcer to them, so I saw a GI specialist. The GI specialist took some blood samples for the ulcer that all came back negative. I thank my lucky stars that he also ran the test for wheat allergy and found that I was "through the roof" positive for celiac. (I have a print out of the labs but I don't understand how to read them yet).

I took Prilosec for 10 days and the upper abdominal stomach pain ceased. It was 2 weeks before I could get the endoscopy and during that time I began to see that my stomach consistently bloated after eating a large amount of gluten. I am happy to now be on the right track and figuring things out! Thanks again for your help!!


Did that upper abdominal pain feel like a constant burning after you ate gluten filled foods?
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gluten-gree as of May 9, 2012

#11 rosetapper23

 
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Posted 13 May 2012 - 11:53 AM

With regard to restaurants, if a server and/or chef does not understand what gluten is or how cross-contamination works, I get up and leave without ordering. When I was newly diagnosed, I was too shy to do that and regretted it later. Also, it's not always the establishments where English is not well understood, because oftentimes they are quite well versed in cooking for people with allergies; rather, it is oftentimes establishments where the servers and cooks are uneducated and ignorant that cause me problems. When a server says, "Oh, Sweetie, if you can't eat wheat, you can just order the blueberry muffins instead because they're made of blueberries, not wheat," believe me, that is the time to get up and leave.

I feel safest at Thai, French, Italian, and Mexican restaurants (and, yes, it's okay to ask the Mexican cook to put on gloves to handle your food), and I feel least safe in Chinese, Japanese, and pizza establishments. However, P.F. Chang's is pretty safe (though not always--it depends on how well trained your server is).
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#12 Raywuwei

 
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Posted 13 May 2012 - 05:48 PM

Thank you! :)
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4/25/12 tTG blood work tested at >200
5/11/12 Endoscopy confirmed scalloped Duodenum
Gluten Free since 5/11/12

#13 MinnesotaCeliac

 
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Posted 13 May 2012 - 05:48 PM

I strongly encourage you to use your writing skills to help work through this new diagnosis. It will help you process as well as help others that follow(and even those that came before). Stay active in this community(great folks with a ton of knowledge) and create a blog if you have not done so already. Good luck!

FYI.... I have found New Planet's Off Grid pale ale fills the craft beer void. It's nicely hopped and NW donates a portion of their sales, so I'm saving the world with each beer I open too. That's a win-win!
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