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Newly Diagnosed And Have No Idea What To Do Next


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#1 tspiggy

 
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Posted 18 October 2012 - 12:09 PM

Hi,

I just received a celiac disease diagnosis a week ago today. My GI had ordered an endoscopy looking for gastritis based on my symptoms, and while the procedure did indeed reveal mild gastritis, a biopsy taken during the scope confirmed celiac disease. I'd heard of the condition but knew nothing about it except that it had something to do with gluten. The doctor explained it as an allergy to gluten, that there was no cure and that the only treatment was to go on a gluten-free diet for the rest of my life.

Because the news was so completely unexpected, I couldn't come up with many questions on the spot except to ask what happened if I accidentally ingested gluten. He said I could occasionally lapse from the diet with no harm. For example, if it's my birthday and I want cake, I can have cake. He pretty much made it sound as if the condition was no big deal and that it could be easily managed simply by eliminating gluten from my diet. I was given a prescription for a nutritionist for more information and said he and I would talk more over the next several months.

He also ordered another test called a capsule endoscopy, which I accepted unquestioningly at the moment because I was still processing the news, and we scheduled it for October 26. He said I also needed to have blood work done (celiac panel) before the test, so I spent last weekend looking for labs in the area that would accept my insurance. Because eliminating gluten from my diet would affect the test results, I was advised not to make any changes until after the capsule endoscopy.

On Monday of this week (the 15th) I found a lab near my home that accepted my insurance and went on their website to make an appointment, but had to call the doctor because I had no idea if I needed to fast for the test. The doctor's assistant referred me back to the lab, but I insisted on speaking to the doctor. Because he wasn't available I left a message asking him to call me asap. He called me on Tuesday night. By then I'd also started questioning the necessity of the capsule endoscopy.

The doctor told me I didn't need to fast for the celiac panel, but he asked me to call my insurance company because they had denied approval for the capsule endoscopy. He added that if my insurance didn't cover it he didn't want me paying out of pocket for it and we could work around that. I took the opportunity to ask him if the test was even necessary and he gave me a vague "Yes and no". I asked him when I should see the nutritionist and he said "Whenever you'd like". Then I asked my doctor if there was any follow up involved. He said yes, but didn't elaborate. I had to press him to get some sort of answer. He said we'd meet every 2 - 3 months to discuss how I was feeling, and I'd need another endoscopy in
"a year or so".

Then he rushed off the phone before I could ask him anything else.

Yesterday my insurance carrier confirmed that they had denied the capsule endoscopy because they considered it an investigative procedure rather than a diagnostic one. I agreed and didn't fight their decision. Then I called the doctor's office and canceled the appointment for the procedure next Friday. Because I wasn't having the test done I also decided not to make an appointment for the celiac panel, either. The nutritionist was covered so I located one who accepts my insurance and called to make an appointment. I've yet to hear from her.

Meanwhile, I've been Googling celiac disease (which is how I found this site) and am overwhelmed by the amount of information, some of it conflicting. Someone on a forum on another website said that celiac disease isn't always accurately diagnosed with blood tests or even biopsies. My symptoms are very mild compared to those of others who have posted on different forums, including this one. I'm still on my regular diet and actually feel better than I did when I first went to see the GI in August. This is all leading me to question whether or not I actually have celiac disease. I don't know when -- or it -- I'm supposed to see my doctor again, and I can't get a hold of him. Now that I'm not doing the capsule endoscopy or celiac panel I don't know if I should start eliminating gluten. I feel lost and in limbo.

Adding to my confusion is that three weeks ago my husband and I had our annual physicals which included a complete cardiovascular workup and blood/urine tests. I gave five vials of blood, which were tested for a wide variety of things. We were told that we'd only get a phone call if our lab results came back abnormal. Our follow up with the cardiologist to discuss the results is in two weeks and so far neither of us has received a phone call about our results so we're assuming that everything is fine. It's entirely possible that they've forgotten to call, but they were quick to call my husband last year when his labs showed high cholesterol and high triglycerides. I didn't receive a call and all my numbers came back normal. My point is that if I haven't gotten a call this year then it's safe to assume that my bloodwork is fine, meaning I'm not anemic, which also leads me to question my diagnosis.

Clearly I need to switch doctors, perhaps get a second opinion. I don't feel sick; in fact, ever since I started working out again last month I feel great. Should I start eliminating gluten from my diet anyway? Should I have the celiac panel done even though I'm not doing the capsule endoscopy? Can somebody please shed some light and clarify my situation?

Thanks...sorry this is so long.
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#2 shadowicewolf

 
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Posted 18 October 2012 - 12:20 PM

Eh, sorry dear, i think you do have it based on the biopsy. There really isn't a need for amother one.

To be clear, it is NOT an allergy. It is an autoimmune condition. That doctor is a bloody idot. A celiac most definently cannot have a slice of regular cake. It damages the vili and it can, eventually, cause permanent harm.

Some celiacs won't even test positive on a blood test. However, if you really want to, do it before chaning your diet and ask for a full celiac panal. It probably wouln't be included in an annual check up.
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#3 psawyer

 
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Posted 18 October 2012 - 12:23 PM

Welcome!

I just received a celiac disease diagnosis a week ago today. My GI had ordered an endoscopy looking for gastritis based on my symptoms, and while the procedure did indeed reveal mild gastritis, a biopsy taken during the scope confirmed celiac disease.

You have a firm diagnosis. False negatives on the biopsy are common, but false positives are almost unheard of.

He said I could occasionally lapse from the diet with no harm.

Wrong! You must not cheat. The accidents (and there will be accidents) will do enough damage.

Clearly I need to switch doctors, perhaps get a second opinion. I don't feel sick; in fact, ever since I started working out again last month I feel great. Should I start eliminating gluten from my diet anyway?

You can seek a second opinion if you want, but my read on your situation is that you are a silent celiac. The fact that noticeable symptoms have not yet developed does not mean that you don't have celiac disease. You are fortunate that it was caught early.

Again, welcome. You will find great help and support here.
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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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#4 mushroom

 
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Posted 18 October 2012 - 12:26 PM

Hi piggy, and welcome. I am sorry you are feeling so confused by this whole thing, which seems like it's all twisted around backwards :rolleyes:

First of all the blood tests and the pill cam have nothing to do with each other. They are two independent tests.

Your GI did an endoscopy looking for gastritis, saw something suspicious and biopsied it, and unexpectedly found celiac disease. In the normal manner of things you would get to the endoscopy after the celiac blood tests had come back positive, and the endoscopy is used to confirm the diagnosis. It is (or was) considered to be the gold standard of celiac diagnosis - in other words, doctors always felt that biopsy trumped blood work.

Now it is true that there are false negatives on both blood work and biopsy. The blood work is often negative in those whose symptoms are mainly neurological or who have dermatitis herpetiformis, and is negative in those people who have non-celiac gluten intolerance. And the biopsy results depend on the skill of the doctor and how many samples he takes.

But you have actually been diagnosed as celiac. I think if I were you, given how you feel the situation lacks clarity, I would go ahead and have the blood work drawn, and then go gluten free, because unfortunately the severity of your GI symptoms is not an indication of how much damage gluten is doing to your body. Some diagnosed celiacs are silent celiacs with no symptoms, and their disease is found accidentally, a little like yours, where they are looking for something else and find celiac :unsure: I would also get a written copy of the biopsy report and the report of your blood work for your own files.

I hope this information has been of some help.
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
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Soy free March 2008
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(Totally) corn free Nov. 2009
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#5 Takala

 
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Posted 18 October 2012 - 03:18 PM

Go get the celiac panel done. ASAP. While you're still on gluten. All they do is draw blood, and then you'll have peace of mind when it likely comes back positive. This gives them a baseline number set to measure future follow-up tests against, so they can see if your antibody levels to gluten are dropping on a gluten free diet.

If your biopsy has already shown celiac damage when they were looking for something else, it must be pretty raw in there.

Some doctors will tell you that you can cheat, so in reverse psychology, you will be less likely to do so. But chances are, as this auto immune disease progresses, you will react much more strongly to small amounts of gluten, and you will not want to cheat. You will also likely have found acceptable gluten free substitutes, or be baking and cooking well enough, that cheating seems pointless. Also, regular commercial bakery goods will start to taste really awful, as your tastes adapt to home made foods.

A regular doctor running a regular annual physical is not going to see or test for celiac disease UNLESS they specifically order a full panel of celiac tests - which they don't do, as most GP's think the disease is quite rare, and they also are not trained to see the more unusual symptoms.

If you are celiac, don't ignore the diet, because you do not want the other complications that go along with it. I think that if a few of us could rent out our our bodies for an hour or two, so everyone could see what it feels like to have long term, undiagnosed damage from malnutrition, even on a good day, we could scare the he(( out of enough people that they'd be begging for the nearest address of a grocery that sells gluten free ingredients. A sort of "this is your neurological damage on gluten" reality series. :P :ph34r:
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#6 Skysmom03

 
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Posted 18 October 2012 - 03:18 PM

I think my other post got interrupted. Anyway the brownies are good. He also loves the udis bread!
Everything will be fine once you adjust to the diet and reading labels. Both my husband and son felt better after they started the diet. Even my son felt different even though he didn't realize he felt bad to start with.
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#7 GFinDC

 
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Posted 18 October 2012 - 03:18 PM

HI,

Sometimes doctors only test for IgA antibodies at first. If that is positive then they do the full celiac panel. you could go ahead and get the full celiac panel. Especially since you don't have obvious symptoms. You can get the celiac panel now and keep the results. Then in 6 months or a year you can get another celiac panel run to check your progress in reducing the antibody levels. Hopefully they will go down to negative levels by a year. That will depend on how well you manage to stay gluten-free. The problem with not having symptoms is you don't know how much damage is being done. Often a doctor will want to do an endoscopy to check for damage. The capsule endoscopy takes photos through your intestine. The normal tube endoscopy can only reach the first part of the small intestine, and so it misses most of it.

CSA Diagnosis
  • EMA (Immunoglobulin A anti-endomysium antibodies)
  • AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies.
  • DGP (Deamidated gliadin peptide antibody)
  • tTGA (IgA anti-tissue transglutaminase)
  • and Takala and I posted at the same time. Whoops! :)

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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

#8 tspiggy

 
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Posted 18 October 2012 - 04:17 PM

Thanks for all your replies. It really is sad that I got better -- and more reliable -- answers from a bunch of strangers on the Internet than from my own doctor.

I'm obviously still in denial. I've been healthy all my life and now I'm suddenly hit with an unexpected diagnosis of a lifelong disease. There is such a disconnect between the doctor's casual attitude and what I've been reading online, and I'm having a hard time wrapping my mind around the implications of my condition. It doesn't help that I have massive health anxiety; I've been obsessed with this in the week since my diagnosis and my anxiety is through the roof.

Is it the end of the world? Of course not, and once I start the diet and things become second-nature down the road, I'll probably wonder why I freaked out so much. But right now it's all new and very frightening. I've decided to have the celiac panel done so I can start the diet asap. I'm worried about letting things go untreated for much longer. But where do I even begin? Thankfully much of what I eat is already gluten-free, but the list of little things I took for granted (spices, seasonings, etc.) is growing in my head and getting overwhelming. My family is ok with going gluten-free along with me to keep food preparation from getting too complicated. And at the moment I can't even think about how to handle eating out or traveling...one thing at a time.

I guess my main concern is: as long as I stick to the diet religiously (acknowledging that there will be accidents), can I continue to lead a normal, healthy life? Can I continue my daily workouts, running my piano studio, singing with my band?

Again, sorry to sound so ignorant and dramatic. I'm just still stunned.
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#9 psawyer

 
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Posted 18 October 2012 - 05:13 PM

I guess my main concern is: as long as I stick to the diet religiously (acknowledging that there will be accidents), can I continue to lead a normal, healthy life? Can I continue my daily workouts, running my piano studio, singing with my band?

Yes, you can. :)
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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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#10 nvsmom

 
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Posted 18 October 2012 - 05:30 PM

...I'm obviously still in denial. I've been healthy all my life and now I'm suddenly hit with an unexpected diagnosis of a lifelong disease. There is such a disconnect between the doctor's casual attitude and what I've been reading online, and I'm having a hard time wrapping my mind around the implications of my condition. It doesn't help that I have massive health anxiety; I've been obsessed with this in the week since my diagnosis and my anxiety is through the roof.

Is it the end of the world? Of course not, and once I start the diet and things become second-nature down the road, I'll probably wonder why I freaked out so much. But right now it's all new and very frightening. I've decided to have the celiac panel done so I can start the diet asap. I'm worried about letting things go untreated for much longer. But where do I even begin? Thankfully much of what I eat is already gluten-free, but the list of little things I took for granted (spices, seasonings, etc.) is growing in my head and getting overwhelming. My family is ok with going gluten-free along with me to keep food preparation from getting too complicated. And at the moment I can't even think about how to handle eating out or traveling...one thing at a time.

I guess my main concern is: as long as I stick to the diet religiously (acknowledging that there will be accidents), can I continue to lead a normal, healthy life? Can I continue my daily workouts, running my piano studio, singing with my band?

Again, sorry to sound so ignorant and dramatic. I'm just still stunned.



(hugs) to you, tspiggy. It's crazy at first but you do get used to it pretty quickly. Honest! I think it took me about 2 months to feel very comfortable shopping gluten-free, and to restock my fridge and pantry with gluten-free soy sauces, etc, and figure out what xanthum gum is. Get a few good celiac books from your library. Green's Celiac Disease: Hidden Epipemic is very good. There is even a Celiac Disease for Dummies. Wheat Belly is a good book to read if you need further persuading to go gluten-free.

You've said that you have mild symptoms but I'm guessing that weren't that mild. They were bad enough for you to have an endoscopy (although the doc thought it was incorrectly gastritis). Those symptoms you have will probably go once you are gluten-free. If you were anything like me, I didn't realize how many problems celiac had caused until I was gluten-free. No more stomach aches, very few migraines, lost 10+lbs, plantar fascitis gone, leg/muscle spasms gone and my hair started to grow in thicker (I have tufts of hair 2-3 inches long all over my head lol). I think you'll be pleasantly surprised by how much better you'll feel, just be patient as it takes some time.

If you stick to a gluten-free diet, you will probably lead a MORE normal and healthier life than you have now. Right now your body is n an fairly constant state of inflammation which will exasperate other health issues or possibly trigger more problems (many end up with Hashimotos hypothyroidism because of this). If the gluten is gone, the inflammation will go and you will be a healthier person. You might think better, look better and feel better... it great you were diagnosed so you can take care of yourself. :) Hang in there, it's worth it in the long run.
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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#11 GFinDC

 
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Posted 18 October 2012 - 06:38 PM

Hi Piggy, great user name by the way, :)

Gluten-free can be a big adjustment at the beginning. But like you said, you get used to it after awhile. The first few months are the hardest I think. That's real helpful for your whole family to go gluten-free with you. You won't have to make 2 separate meals that way, and won't have to worry so much about CC. If they eat a whole foods diet they will probably be healthier. Eating whole foods means buying foods in their natural state, not processed, preserved, colorized, sweetened and boxed, etc. The labels are simple to read because there are very few ingredients and you don't need a chemistry degree to figure out what they are. They use gluten in a lot of mainstream processed foods that you wouldn't expect it to be in. So whole foods are safer and quicker to shop for.

Here are a bunch of threads that may have helpful info for you.

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

#12 megsybeth

 
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Posted 20 October 2012 - 05:09 AM

Hi TSPiggy,

I'm a newbie too. I got diagnosed kind of by accident because my son most likely has it and as I started reading here and at other sites I realized how familiar many celiac symptoms sounded to me. So I emailed my primary and she ordered a celiac panel, which came back positive.

I've had pain in my abdomen over the years but other than that, never would have gone to a GI or considered I had GI issues. But I did have anxiety and depression (less of a sadness and more of a fog, some people call it vaseline over the eyes), fertility issues, dark circles under my eyes, very thin except for a big belly, weak teeth, migraines as a child, sinus troubles (assumed were allergies). After going gluten free my anxiety and depression and sinus troubles lifted markedly, but my abdomen got much worse, I'm hoping the pain is recovery...but it's only been a week, so still figuring it out.

Also, I'm a pretty open person so I wind up talking about celiac and my diet often (and like I said it's new). Be prepared for people to say lots of silly things about how much weight you'll lose on that diet! Gluten free is fashionable, which is good for us because there are more products available and more and more labeling, but be prepared to do lots of smiling and nodding.
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#13 kelly97

 
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Posted 22 October 2012 - 07:29 PM

I was diagnosed about a month and a half ago, similar to how yours went. I was having an endoscopy & colonscopy to look for cancer. While they were in there, they discovered the Celiac's by how it looked and multiple biopsies (my doctor's words to me, "You meet the gold standard for celiac's"). My doctor told me to switch to gluten-free (which, like you, I had already been eating somewhat gluten free already). At that point, he also ran a celiac panel and some other tests for celiac's. The bloodwork came back negative. I also had a capsule endoscopy 2 or 3 wks ago. That also came back showing nothing. I went back for a follow-up and now my doctor was saying that it looks like everyting is normal. My GI doctor doesn't know what to think and just shrugs his shoulders.

He also was nonchalant about follow-ups. In fact, he told me that GI doctors typically don't treat or follow patients who have celiac's. Maybe we're seeing the same doctor. LOL

I just don't know what to tell you. Because what if you really do have celiac's, yet your bloodwork, comes back negative? And your doctor is like mine, where, basically, if it's negative then more than likely it's not celiac's?

Good luck with everything.
-Kelly
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Diagnosed Celiac Disease 8/26/2012
Diagnosed Multiple Sclerosis July 2010
Currently seeing an Oncologist since May 2012

#14 frieze

 
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Posted 23 October 2012 - 05:57 AM

I was diagnosed about a month and a half ago, similar to how yours went. I was having an endoscopy & colonscopy to look for cancer. While they were in there, they discovered the Celiac's by how it looked and multiple biopsies (my doctor's words to me, "You meet the gold standard for celiac's"). My doctor told me to switch to gluten-free (which, like you, I had already been eating somewhat gluten free already). At that point, he also ran a celiac panel and some other tests for celiac's. The bloodwork came back negative. I also had a capsule endoscopy 2 or 3 wks ago. That also came back showing nothing. I went back for a follow-up and now my doctor was saying that it looks like everyting is normal. My GI doctor doesn't know what to think and just shrugs his shoulders.

He also was nonchalant about follow-ups. In fact, he told me that GI doctors typically don't treat or follow patients who have celiac's. Maybe we're seeing the same doctor. LOL

I just don't know what to tell you. Because what if you really do have celiac's, yet your bloodwork, comes back negative? And your doctor is like mine, where, basically, if it's negative then more than likely it's not celiac's?

Good luck with everything.
-Kelly

You can't "unmeet" the gold standard, lol. You were gluten free for several weeks before the pillcam, if my reading/math are correct. You are healing! Be ever so happy!
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#15 mommyof4

 
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Posted 24 October 2012 - 09:21 AM

Hi...welcome! You can do this...I hadn't heard much about Celiac Disease before I was diagnosed a year ago either. This forum is wonderful for questions & encouragement.

The "gold standard" to confirm Celiac Disease is the biopsy...so be confident in that diagnosis. Personally, I would do the blood test too...the Celiac Panel...just to see where your numbers are so that you can compare them in a year or so. However, if your blood test is negative, I would still go with the biopsy confirmation because some blood tests are negative. If you are going to do the blood test, you really need to get it done before you eat g.free. Also, most local clinics should be able to order that blood test if your G.I. dr wants it done. My G.I. doctor doesn't do a follow-up biopsy unless there are still issues.

So, here are (in my opinion) the 3 best items to buy when someone is getting started...

1."Gluten-Free Shopping Guide". A HANDY book that you can order on Amazon...it is a lifesaver in figuring out what products are g.free without spending a ton of time reading labels.

2. Pamela's Baking and Pancake Mix...this mix makes awesome muffins, pancakes, cookies. You can pick this up in most grocery stores, but it is cheaper to order on Amazon

3. Jules Gluten-Free All Purpose Flour...I substitute this in my regular recipes & it is awesome. You have to order it on line on her website

There is definately a "sticker-shock" factor in learning to eat gluten-free. You can do this though...you will learn & it really does get easier. I was completely overwhelmed at first as I think so many of us are, but with time it becomes second nature. When I make a meal now, I usually use my old recipes & just alter the ingredients to make sure they are g.free.


Good luck...keep us posted.
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