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Surprised This Morning With Celiac Diagnosis, Not Sure What To Do


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#1 rorenchan

 
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Posted 04 October 2012 - 01:11 AM

This morning at the crack of dawn (7:45am to be exact), I was suddenly awoken to my cellphone ringing. When I got off the phone, It took me a minute to realize what just happened. It was my doctor's nursing staff, calling to inform me that my blood tests came back positive for celiac disease, and she scheduled me for a mandatory endoscopy on Halloween, the earliest available appointment they had. She said they would be mailing me information regarding the disease and instructions for the endoscopy.

And that's it. Practically the only thing I knew about celiac disease going to sleep last night was that you can't eat gluten. It's been one of those crash course self study days, as you can imagine. It was unexpected, and to say I was blind sided is putting it mildly. Yesterday I had special k cereal, indulged in a Starbucks pumpkin cream cheese muffin, put soy sauce on my stir fry, and had breading on my chicken. Even my multivitamin and calcium supplements I take every day have wheat (centrum chewables and viactive caramel chews). When I took the blood test last week, I had coffee cake and a turkey pita sandwich maybe 30 minutes before going into the lab. I joked with the allergist reception staff that the market food in the hospital square smelled so good, and they told me to go try the fresh danishes. I vividly remember saying 'Well it's a good thing I haven't been tested for celiac disease yet!' I think I signed my own death warrant in that very moment.

It wasn't actually my allergist who scheduled me for the test. My gastro who I had seen a few weeks earlier thought it was strange my IBS responded to steroids I had taken for nasal inflammation. Simply because I told him this random fact in our appointment, he felt that I should rule out celiac disease. I went home that day without taking the test. It wasn't until my appointment with my allergist, who scheduled me for an allergy lab that day, that I remembered the celiac test was pending on my file. It was on my mind when I was talking to the reception staff about the danishes on my way out. I had my delicious coffee cake, and then had my blood drawn.

At least I was able to have one last pumpkin cream cheese muffin.

Medical history wise, it's a long story how I got here. I am 29, female. The short version is that 2 years ago I became sick with anxiety symptoms, constant panic attacks, food aversions, dizziness. 1.5 years ago I tested positive for mononucleosis after my lymph nodes started protruding on my neck giving me a cancer scare, and then my tonsils blew up, and my liver tested positive for viral hepatitis. Even though my liver rebounded quickly, I never recovered, having been bed ridden ever since. Sure, symptoms have changed over the months, but the constant lethargy, dizziness, and stomach issues remained the same. My gp told me to take a year off and to see a psychiatrist. I took her advice. After a year of waiting, I started aggressively looking for answers. I was having severe rhinitis at the time, and they put me on flonase for 2 months. Then since that didn't work, they put me on a 6 day steroids pak. Since that only kind of worked, they took a ct scan of my sinuses to take a look. They found two mucus retention cysts, and I was given access to see the ENT department. The ENT doctor examined me and said it's allergies, and had his staff refer me to see the allergist. Backing up some, after years of constant stomach and digestive problems, my doctor would not let me see a gastro specialist for just IBS, but once I developed internal hemorrhoids from it, they let me have a consultation. It was during that consultation that I mentioned the steroids and how my stomach felt less inflamed. He told me I can rule out celiac disease, but it's most likely just IBS and prescribed me to eat better and do yoga daily, which is why I didn't take it then. It sounded optional, like getting a flu shot. I guess I'm lucky that he put it on my file, and that I had to go into the lab anyway for my allergist. Or I'd probably never would have known.
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Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

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#2 kareng

 
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Posted 04 October 2012 - 05:42 AM

Welcome to the club!

You still have a few weeks of eating eat you want, reading around and learning before your endoscopy. Don't stop eating gluten until you have your endo.
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#3 lovegrov

 
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Posted 04 October 2012 - 07:20 AM

KEEP EATING GLUTEN until after the endoscopy.

richard
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#4 GFinDC

 
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Posted 04 October 2012 - 09:45 AM

Hi,

You are right, it's a good thing you got tested and found out about the celiac disease! Symptoms would only get worse with more time. You should stay on gluten until all the testing is complete though, and then you can start the gluten free diet. In the meantime, you can eat up all the remaining gluten in the house and start learning about how to eat gluten-free. The whole foods diet is a good way to go when starting gluten-free. It is simpler and hardly any label reading to do.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 rorenchan

 
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Posted 04 October 2012 - 09:46 AM

If I need to keep eating gluten for my endoscopy, how much gluten is too little?

If I am going to have to eat it, I want to make the bare minimum effort. lol.
  • 0
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#6 Darn210

 
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Posted 04 October 2012 - 09:58 AM

Welcome to the board. Lots of helpful people here!!


In case you didn't get the message in the previous posts . . . DON'T STOP EATING GLUTEN UNTIL AFTER THE ENDOSCOPY!! (Just trying to make a point :lol: :lol: )

In addition to taking this time before your endoscopy to eat up as much of the gluten out of your house that you can, and educating yourself. . . you can also experiment with some gluten free recipes and products so that you have some options ready when you go gluten free.


7:45 am huh? I don't think anybody is even at my doctor's office until 8:30.
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#7 rorenchan

 
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Posted 04 October 2012 - 10:05 AM

7:45 am huh? I don't think anybody is even at my doctor's office until 8:30.



I know, I was quite shocked. Actually my cellphone says they called at 7:39am and the call lasted a grand total of 1 minute. I'd almost think it was a dream if I didn't have my call history on my phone as evidence. I have a tendency to forget everything that happens within the first 15 minutes of waking up.
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Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#8 MitziG

 
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Posted 04 October 2012 - 07:00 PM

Here is the thing....you have celiac. The biopsy may or may not show it, they can be iffy. But the blood tests don't lie.

So the reality is that once your endoscopy is done, you have to go gluten free, FOR THE REST OF YOUR LIFE.

Enjoy every last Starbucks pumpkin muffin you can now. Have fun!
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#9 Kaitiana

 
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Posted 05 October 2012 - 05:33 AM

Medical history wise, it's a long story how I got here. I am 29, female. The short version is that 2 years ago I became sick with anxiety symptoms, constant panic attacks, food aversions, dizziness...I was having severe rhinitis at the time, and they put me on flonase for 2 months. Then since that didn't work, they put me on a 6 day steroids pak...Backing up some, after years of constant stomach and digestive problems, my doctor would not let me see a gastro specialist for just IBS, but once I developed internal hemorrhoids from it, they let me have a consultation...I guess I'm lucky that he put it on my file, and that I had to go into the lab anyway for my allergist. Or I'd probably never would have known.


Anxiety, severe rhinitis that didn't respond well to medication, and IBS were some of my major symptoms. All have responded well to my voluntarily going gluten-free earlier this year. I self-diagnosed for several reasons and believe I am gluten-intolerant rather than full-blown celiac, but I feel so much healthier now than I have in years. My anxiety/OCD are much more manageable now as are most of my other symptoms. Every time I start to doubt my gluten intolerance, I remind myself of how well my body has responded. The biggest proof for me is the fact that this is the first ragweed season in years that I have not been a miserable, exhausted, nose-running-all-the-time mess! Going gluten-free can be a huge adjustment at first, but I wouldn't trade how much better I feel now for anything.
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Self-diagnosed gluten-intolerant February, 2012.
Starting eating gluten-free February, 2012.
Anxiety/OCD sufferer, symptoms much more manageable since giving up gluten; severe seasonal/year-round allergy sufferer, suffered from constant inexplicable coughing, symptoms MUCH lighter since giving up gluten.
Suffered other symptoms including uncontrollable itching, neuropathy, aches, pains, IBS, etc. that have all pretty much resolved since going gluten-free..

Now have WAY more energy, much more like my old happy self, and wouldn't trade this feeling for an unlimited amount of chocolate chip cookies (my former craving arch-nemesis)!

#10 nvsmom

 
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Posted 05 October 2012 - 09:48 AM

Sorry to hear of your diagnosis but I;m glad you are going to be able to make yourself feel better by cutting a few foods out of your diet. It's daunting at first but it's amazing how quickly it becomes simple. I'm sure you'll do great figuring out what you can and can't eat. There are some really good books out there on it that I found helpful. I think Green's book, Celiac Disease: a Hidden Epidemic is my favourite.

I was diagnosed based on blood tests without the endoscopy, so I don't quite understand why doctors want you to have a "mandatory" endoscopy... They've already said that you have celiac so why do they need to schedule an endoscopy? To look at the intestinal damage which will not help unless other issues are expected to be helped? Personally, I would call the doctor back (at a more humane hour - lol) and question the need for the endoscopy. I'm not a fan of invassive procedures like that where they need to knock you out unless it's absolutely necessary...but that's just me. :)

Good luck with the diet. :)
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#11 GFinDC

 
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Posted 05 October 2012 - 02:30 PM

Hi,

2 slices of wheat bread a day should do it. You don't have to go overboard on the gluten.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 DavinaRN

 
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Posted 05 October 2012 - 06:46 PM

I agree on the Endo, why take the risk when it will change nothing other than your checkbook balance, you still need gluten free life.

Kaitiana, glad to see I'm not the only one skipping formal diagnosis. PCP said he thinks it is, just worried about malabsorption so see GI for tests (guessing he has great insurance, I don't)
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#13 psawyer

 
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Posted 05 October 2012 - 06:58 PM

I agree on the Endo, why take the risk when it will change nothing other than your checkbook balance, you still need gluten free life.

There is minimal risk in the endoscopy.

There is value in having the documented medical diagnosis.

As long as you are in complete control of your own life, who cares.

When you have to entrust your feeding to others, it matters. You may want an official diagnosis for accommodation at a school, a workplace, a hospital, or someday, a nursing home. A documented diagnosis will ensure that you get ADA accommodation.
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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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#14 a84c72

 
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Posted 06 October 2012 - 08:20 PM

Here is the thing....you have celiac. The biopsy may or may not show it, they can be iffy. But the blood tests don't lie.



I had an endo when I had the colonoscopy done.....bottom for IBS and some blood...endo for acid reflux. Imagine my surprise when they called with CELIAC! Those villa are BLUNT in my gut.


Blood tests after the fact==NEGATIVE. Go figure that out.

I read later that sometimes blood tests aren't sensitive enough and at that point, it's the biopsy that doesn't lie (and a stool test is more sensitive).
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#15 Iris court

 
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Posted 07 October 2012 - 07:09 AM

I suffered for about 10 years looking back with the last three from hell before I received my diagnosis . Colonoscopy was positive for endoscopic colitis , blood work was always negative, finally after being told " I can't help you " by a neurologist for horrific head pain ... Sever depression and hopelessness ...
Finally a positive endoscopy by a celiac GI doctor in NYC.

Now everything makes sense and life can only get better!
Golden standard is an endoscopy for absolute diagnosis.
Don't be surprised if additional food allergies arise along the way, they seem to follow along with celiac.
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