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

[rorenchan]

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.

[kareng]

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.

[lovegrov]

KEEP EATING GLUTEN until after the endoscopy.

richard

[GFinDC]

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

Open Original Shared Link

[rorenchan]

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.

[Darn210]

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: )

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.

[rorenchan]

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.

[MitziG]

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!

[Kaitiana]

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.

[nvsmom]

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.

[GFinDC]

Hi,

2 slices of wheat bread a day should do it. You don't have to go overboard on the gluten.

[DavinaRN]

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)

[psawyer]

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.

[a84c72]

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).

[Iris court]

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.

[GottaSki]

Welcome!

Just wanted to clarify - because this discussion would have confused me when I first learned that I had a positive blood test for Celiac - those with Celiac Disease can have:

positive blood work / positive biopsy

positive blood work / negative biopsy

negative blood work / positive biopsy

There are over 300 symptoms - many with Celiac Disease do not present with classic symptoms and there are some folks without notable symptoms.

We come in all shapes and sizes, some relatively healthy, some very ill - it is up to each person and their doctor to decide what testing should be done.

Personally - I wanted as much information as possible and am glad that I had endoscopy because it revealed the serious damage Celiac Disease had caused while doctors had scratched their heads or dismissed my symptoms for decades.

Take these three weeks to learn about Celiac Disease and prepare for the transition to your new gluten-free life. The transition is tough, but finding that you can not have gluten before major damage to your health is priceless.

Good Luck to you

PS...your doctors may have already ordered them, but make sure you have a full celiac blood panel before you remove gluten - this information can be important to have for comparison in your follow up care.

[rorenchan]

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.

[psawyer]

He's really worried that there could be complications from the endoscopy and the anesthesia.

Nothing is 100% risk-free.

Usually, the endoscopy procedures is done with sedation but not anesthesia. You will be groggy after the procedure, and will likely have no memory of it. You WILL need a responsible adult to take you home after the procedure and stay with you until you are fully alert--a few hours, at least.

I have traveled that road three times. It is not a big deal. Complications are not unheard of, but are extremely rare.

[GFinDC]

Hi,

Hubby may have to change his ways some. The biggest problem would be baking or cooking with wheat / gluten flour. The flour is a fine powder and can get airborne and settle on surfaces throughout the area. Or be breathed in.hours later. There are gluten-free rice noodles available, and San-J makes a gluten-free tamari sauce. So he can still eat his noodles and soy sauce. gluten-free beer is out there too. Kissing can be a problem tho, and he needs to brush and gargle before full on face sucking. You are not nessecarily bad off to be a little paranoid about gluten avoidance at first. It can take a while to learn all the places gluten can hide in foods, and the different names they use for it. That's why it is better to stick with whole foods instead of processed foods when starting the gluten-free diet.

[GottaSki]

That kitchen would scare any of us.

You'll need your own toaster, colander, can opener, etc. I highly suggest getting a second set of cookware and cooking utensils in a different color to minimize cross contamination. If it is possible designate one counter as a gluten free zone for your food prep - if not, prepare everything with a barrier - gluten-free cutting board, plate, foil, etc. The dishwasher is sufficient for getting plates and eating utensils clean. When I first went gluten-free we scrubbed some items by hand and then ran them thru the heavy cycle of the dw and had no problem.

As you find your way and replace all of your favorite gluten containing foods, your husband may decide he'll go gluten-free in your home. Mine did, but we started with a combined kitchen and evolved over a year or more. No need to rush this - the learning curve is enough for you to deal with right now - your husband will evolve along with you in time. That being said - should he be volunteer to go gluten-free in the home - take him up on it.

Oh - I'd suggest your husband learn to do his own clean-up - if that's not possible I'd wear gloves when tackling the problem yourself.

Hang in there...this does get easier.

[Gemini]

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.

If you have positive blood work, especially tTg and EMA, then that is a formal diagnosis and the only reason you need an endo is if you want to see exactly how bad the damage is. Some people need to see pictures of damage to convince themselves to remain gluten-free for life.

You also do not need new pots and pans unless the ones you have are porous. Stainless steel or cast iron are fine, as long as the cast iron is coated, preferably with enamel. As long as you scrub non-porous cookware well, you will get sick from sharing pots. Gluten cannot absorb into cookware unless it is porous.

[rorenchan]

Hi guys, just an update.

I had my endoscopy yesterday. It was pretty much a non-event. I was scared going in, that I wasn't able to sleep the night before, combined with being so hungry from fasting, I basically fell asleep on the hospital bed before they even gave me the sedative. They thought it was pretty funny. All I can remember was the burning sensation of the sedative when it entered my IV, and feeling it flow up my arm to my heart and lungs and into my brain, and I could taste it on my breath. Then it was lights out, literally, because they turned all the lights off in the room, and like half a second later I was waking up in recovery. I don't remember any of my discharge instructions. My bff took me home, and she said the doctor talked to me, and I just made waving arm motions at him to stop talking, and the only thing I kept saying was that I was tired.

He didn't say anything to her about what he saw, only that my biopsy results will take 2-3 weeks, and to start eating gluten free. Since I have Kaiser, they updated my past visit section on their website, and under this visit's diagnosis he wrote, 'Abnormal Laboratory Findings' so I'm guessing he must have seen something while he was digging around in there, or maybe he was referencing my blood test. Who knows.

I wish it didn't take so long to get back biopsy results. .

I did manage to get my blood test results in detail. According to my allergist/immunologist, my antibody levels are really high.

Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive

(tTG) Ab, IgA: >100

Endomysial Ab IgA: Positive

Endomysial Ab Titer: 1:160

IgA, Serum: 286

If you had an upper endoscopy, how long did it take to get your results?

[SMDBill]

The sinus symptoms are interesting. I posted this info elsewhere, but it's somewhat relevant. I suffered constant post nasal drip and I had a few sinus and throat infections along the way. I also was forced to constantly clear my throat - about once per minute while awake. It was embarrassing and irritating. Once gluten-free I think it was somewhere within the first couple weeks gluten-free that I noticed the sinus issues disappeared. I've had those issues for years and they simply vanished. Got glutened and they returned, now nearly gone again. It's amazing how much of our lives and bodies are impacted by gluten so you have a lot to look forward to.

As mentioned, gobble up all that gluten now while you can. I gave up a lot of my favorite foods, but you'll never regret for a moment making yourself feel so much better. No food is worth physical and mental pain.

[GottaSki]

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!

[rorenchan]

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!

My doctor only ran the one blood test, we haven't ran any tests for IgG yet. It's all so new to me, I'm still trying to figure out what the different tests represent. My doctor said that depending on the results of my biopsy, I'll be able to get an official diagnosis, and then he'll refer me to a nutritionist who specializes in celiac disease, so perhaps I can ask the nutritionist to run the extra tests before we get started. Thanks for the heads up!