newly diagnosed--scared, confused--long post

[canadave]

Hi all...

I'm 36 years old, newly diagnosed with CD, and I'm still in shock and trying to cope with what this means. I have a bunch of questions I'm hoping folks can answer. I'll start with my back story:

For about 3-5 years I've felt "not quite right"...felt "off", had malaise, felt depressed, was easily irritated, etc. Also had heartburn. Stools were sometimes loose (not always) and I often had constipation, which I chalked up to my crummy diet (heavy on pizza, pasta, sandwiches, hamburgers, and fries). Went to doctors, had various blood work done, even had an EGD done that showed "traces of GERD" according to the report. The doctor I had said I likely had IBS. Apparently, amidst all the blood work done, no one ever tested me for CD.

Well, just moved to a new part of Canada, found a new doctor, he sent me for tests, and my anti-tissue transglutamin test came back positive. "You have celiac disease," he said. He's going to try to get me in to have an endoscopy/biopsy in June/July at earliest, and he's going to set me up to see a dietitian.

OK. I've done a bunch of reading, searching online, and researching this. I do now have a basic understanding of what the disease is, what its implications are, etc. Now for the questions:

1. Does the anti-tissue blood test mean 100% for sure I have CD? Are there "degrees" of CD, or do you either "have it or don't have it"?

2. For all this time, I've been eating gluten foods with only slight symptoms (similar to IBS). If I go on a gluten-free diet for a year, but then have a slice of pizza one day, how bad is that for me in the long run? In other words, I've gone this long without being on a gluten-free diet, without having major problems....if I break the diet for a week out of the year, or for one meal a month, is that really going to spell disaster?

3. Some people seem enormously sensitive to gluten--a crumb of regular gluten bread causes them extreme diarrhea, for example. I don't have that issue. Do I have to be as careful as those extra-sensitive people about things like not using the same utensils for preparing gluten-free and glutened foods, scrubbing food prep boards, etc.? In other words, is the diligence of CD equal, no matter how symptomatic or asymptomatic you are after consuming miniscule amounts of gluten?

4. My endoscopy will probably be no sooner than June/July. Should I immediately go on a GF diet instantly? I have to go back on a gluten diet for a couple of weeks before my test, right? Or should I just eat regularly for now and go to the GF diet after the CD diagnosis is confirmed by the biopsy?

5. Is there any research being done for a cure to this? Any hope at all?


Sorry for such a long post...I'm still in shock about all this. It feels like a death sentence. My wife and I have been trading bouts of crying. It doesn't help that we still have lots more questions than answers about how to proceed from here. I'm practically in tears just typing all this Thanks for listening...hope some folks will reply back.

--Dave in Nova Scotia

[aklap]

Hi Dave,

I'm running short on time, but I just wanted to quick welcome you and say - try not to worry too much. I know things look dark right now - but it's not a death sentence. Things will be OK...trust me...you'll be fine. We'll help you get thru this!!

I better get the dishwasher unloaded or things will NOT be OK in my house hehehee

I'll be back...hang in there!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

OK - now that the eminent danger of critical mass has passed [I've unloaded the dishwasher], I can answer some questions while I wait for my GF pizza to finish cooking

[canadave]

Al -

Thanks so, so much for replying so soon....my wife and I just had another crying bout The biggest thing upsetting us is that we don't have good enough answers to our many questions....having some real info from folks dealing with this, such as yourself, is worth its weight in gold.

If I may just followup on a couple of points......:

So, you think it won't be harmful to me to wait until my EGD (probably July at earliest) to go onto a GF diet? The idea of suddenly having to give up the foods I love so soon (like, tomorrow) is so upsetting to me, I can't even begin to fathom how to deal with this.

Second point--I hear you about gluten causing villi damage even if it doesn't cause symptoms. And I'm sure I'll feel better once I go on the GF diet. But I just can't wrap my brain around how (for example) one slice of pizza (or one crumb of gluten) eaten on rare occasions causes significant intestinal damage. I mean, if it's that horrible, then surely I've got no hope, as I've been in this gluten-sensitive state apparently for years?? And if people can feel better in days or weeks after going on a GF diet because the villi heal themselves, then how come a rare ingestion of gluten is considered so taboo? How is it that even the smallest crumb of gluten is considered a horrible thing, if I've been eating nothing but gluten for years? How much damage can one tiny crumb of gluten do, really? That's what I'm most confused about.

Last point...I can sort of come to grips in time, I think, with a GF diet. Like, I'm hoping eventually I can get used to the idea of simply eating different foods. The thing that I think is going to cause me the most grief is these "sterile environment" precautions, like making sure nothing remotely in contact with gluten enters my mouth. Is it really that stringent for everyone? Again, this goes back to my question about how even the tiniest gluten amounts can cause significant damage.

Thanks again....just trying to get my head around all this

Dave

[aklap]

Hi Dave,

No question about it - your head is spinning right now. There's lots of stuff going thru your mind - more questions than answers. My advice to you is read and learn as much as you can about this. You're already heading in the right direction by seeking out information. The more you know the better equipped you'll be to handle this.

Right now - trying to get a proper dx should be your main focus. If this means consuming gluten for another month or two while you wait for your for your appt. - it's something you need to endure. Of course - you have the option of saying, "No testing and I'll go GF with out it". However, I would recommend you rethink that option. It's not always easy being in "no-man's land" without a diagnosis - trust me - I live there every day

Again, I'd check with your doc or the gastro that will be doing the scope to see what they tell you. You might be able to reduce your gluten intake to say a couple of slices of bread per day.

Sure - one crumb may not be life threatening - but if you add up all those one crumbs over time it can cause issues. If you are ingesting gluten, your body is constantly attacking itself and not healing. This is not good!

Part of the problem that exists with CD is malabsorption due to damaged villi. If you're not absorbing nutrients properly, this can cause a whole host of issues. You are depriving yourself of needed vitamins & nutrients - Vit K, D, A, E, B, Iron, Calcium and others that I've forgotten

Getting your head around all of this is not easy. My wife's Sister in Law is going thru this right now. She just came off of a 2 week wheat free trial. She's now back on wheat [her doc suggested only wheat. wheat free is not gluten free] and now realizes that she can't continue eating this poison. I talked to her tonight. She went to Pizza Hut for lunch and had pasta. Needless to say it was a race with the devil to get to a bathroom.

One thing that you have to realize is that you can find/make GF alternatives to almost all of your favorite foods. There's very few things that we have not been able to replace. Ice cream sandwiches is one of those things - but we're working on that...

Just keep reading and learning...soon you'll start understanding it...soon it'll start making sense.

Here's some basic CD info:
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-topic-overview
http://www.celiac.org/cd-main.php
http://www.medicinenet.com/celiac_disease/article.htm


Our Thread on a Gluten Challenge: How long, how much? - Ever wonder how long it takes and how much gluten needs to be eaten?


Here's some medical info on CD:
Detecting Celiac Disease in Your Patients - HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston - http://www.aafp.org/afp/980301ap/pruessn.html

CD - More common than you think (2002) - http://www.aafp.org/afp/20021215/2259.pdf

Detecting Celiac Disease in Adult Patients (PDF) -(2005) http://jaapa.com/issues/j20051001/pdfs/celiac1005.pdf
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[canadave]

Hi Al,

You aren't just kidding about my head spinning. I keep vacillating between "I know I'll be fine, I can handle this, it's just some dietary changes" and "I'm going to feel so much healthier" to "OH MY GOD, NO MORE NY PIZZA THAT I LOVE SO MUCH?" and "I'm going to miss eating out with my wife whereever and whenever we want!" and "I've heard that GF foods are so awful....." I mean it feels like being diagnosed with cancer, except of course it isn't as grave. It sure feels like it, though

Thanks again for all the helpful info and links. As you pointed out, information is power.

My main focus right now is most certainly getting a proper dx. Because I've been eating gluten for so long, and still have little to no troublesome symptoms, I'm more than happy continuing my gluten diet until my endoscopy. I did call my Dr. yesterday and asked, and he said he didn't have strong feelings either way about me continuing my normal diet up until the test. It's not a question of "enduring" gluten for me, because I actually feel quite fine most of the time after eating it. I ate a half a large pizza the day before my blood results came in for CD, and I felt absolutely fine.

I'm also thinking I should do some additional blood work--I only had the tTG test. There's other stuff too, like EMA and IgA and all that...I should be doing those too, yes?

I'll go have a look through those links--I think I've already read two or three of them (for sure the NIH article). I mean, I've already got a fairly good understanding of what the disease is all about and how it works...I just need to start figuring out what I have to do on a practical day-to-day basis, assuming (as it looks right now) that I do have CD.

Anyway, thanks again....knowing I'm not alone in this is the only thing keeping me sane and non-suicidal at this point.

--Dave

[celiacmaine-iac]

Hi Dave-
Al has given you a lot of good info. Many of the people on this board have been dealing with this for years and have so much to share.

[canadave]

Steph,

Thanks so much for your post. Just having various people describe their CD experiences is helping somewhat...although I'm still feeling like a big part of my life just died. I'm really feeling my mortality and vulnerability in a big way for the first time. The idea that I can't just go with my dear wife to all the restaurants we used to go to....we had such plans for going to Europe for our anniversary and having pizza in Naples and sampling the best restaurants in Paris....the idea that those dreams are now dashed is pretty overwhelming to me.

If this was just a case of "you have to be on a strict GF diet all the time, but if you're on a trip somewhere for a week and break your diet a couple of times so you and your wife can have some fun at a restaurant, it's no big deal", then I could handle it a lot better I think. Making GF foods at home is no big deal....it's handling being out and about, especially on special holiday trips, that's much more distressing to me.

I do see what you're saying about CD helping you appreciate the little things. I'm not quite there yet though I'm still really scared, upset, and frustrated....

I guess I've probably posted all this in the wrong subforum....which forum here is the best place for "emotionally supporting each other", particularly for newly diagnosed people like me? I've looked at some of them but none seem to really fit where this thread is going.

Sorry if I sound sorry for myself...I just woke up, and the reality of everything just sunk in again......

--Dave

[aklap]

Mornin' Dave,

Yeah, there is a complete Celiac Panel. You can read more about it in Our Thread on Celiac Blood Work Tests - Lists the complete CD blood work panel and links to other testing info.

However in your case [with a positive tTG], there's probably no need to re-do the tests. The entire panel does become an issue when the tTG is negative since it's not as sensitive when there's partial villous atrophy. The other tests in the panel help give you a better picture of what's going on.

Yeah, you are going to be going thru a mourning process. Personally I feel you go thru a grieving process. You are losing the foods & lifestyle that you once loved - that's not something that easily dismissed. You are also losing your unhealthy self - which is a good thing!! So, allow yourself to experience the entire range of emotions as you start out on this GF Journey. Just keeping in mind things will be better when you've "broken thru to the other side".

Will things be the same? No
Will they be better? Somethings yes, somethings no.

One thing you do loose is...convenience. Things now will require a bit of planning and forethought. That's tough at first, but you figure out ways around that too.

Going on trips - yeah that can be done. Italy has a high percentage of celiacs, so their culture is aware of it. With some searching, you'll probably be able to find that pizza in Naples - GF of course. There are companies that will organize GF trips.

http://www.celiactravel.com/italy.html
http://www.celiactravel.com/stories/lake-garda-italy.html
http://www.bobandruths.com/

Give yourself some time...just let this all sink in.

Like I said - hang out with us - we'll get you thru this
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

We've had several discussions on the emotional toll this takes, here's one such discussion, maybe it'll help.

http://forums.glutenfree.com/topic892.html

I did move this thread - it's not really in the wrong place - but rather to have better visibility for the others. Keep in mind, weekends are kind of slow around here. I'm sure others will be along come Monday.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[canadave]

Good morning Al,

Just to clarify this....since my tTG is positive, and it's almost 100% efficient at determining CD, then tell me again what I need the endoscopy for? Is it the "almost"? What else might it be, if the endoscopy comes back negative?

I see the part in the testing thread you posted that talked about confirming tTG results with EMA for people who have type 1 diabetes, Hashimoto's, etc....shouldn't I get that EMA done anyway just in case I have heretofore-undiagnosed type 1 diabetes, Hashimotos, etc?

Yes, I see your point about the grieving process...that's what my wife and I were talking about last night. On the one hand "we just have to make some dietary changes and make sure you don't get glutened." No big deal. On the other hand, it feels like many things we used to enjoy together (impromptu trips to the local pizzeria that we both love, going out on road trips without a care in the world as to how we'd eat along the way, travelling to farflung destinations and eating out every step of the way) just got blown up in our faces. And reading about the consequences of not adhering to a GF diet (cancers with poor prognoses, all sorts of other problems) is scary as hell right now.

The biggest thing that I'm still trying to come to terms with is trying to get a better sense of how occasional gluten (by accident or design) will affect me from now on. Now that I know I have CD, I realize I've had some mild symptoms for years and years. I know you said "the crumbs add up over time," but considering that the number of crumbs I could consume over a year, if I watch out for it, is probably less than the number of crumbs in the pizzas I've had over the past week--do I panic if I have some gluten via CC or whatever? People here on the forums seem to mostly treat CC as an annoyance, a nuisance. If "one molecule of gluten" is bad for you, shouldn't CC be treated almost as a life or death situation? If I have a slice of pizza as a special treat on my birthday once a year for the next 20 years, does my risk for cancer jump 150% over what it would've been if I hadn't had those slices of pizza?

Still reading various forum threads here....trying not to let this consume and overwhelm me

Thanks for all the support and info....I appreciate it all so much, I can't even begin to thank you enough.

[canadave]

Al, just saw the grief thread link you posted. Thanks so much.

[aklap]

[aklap]

Another recommendation: Go to your library or purchase the books:

Wheat Free Worry Free - The Art of Happy, Healthy Gluten-Free Living by Danna Korn. I feel this book is a must read for those starting out on their GF lifestyle.

Celiac Disease - A Hidden Epidemic by Dr. Peter Green. This is an excellent book on CD!! Another must read.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[canadave]

lol....thank you, Al. I needed all that. BTW regarding your "my gut says no" comment....literally, or metaphorically?

Sorry, I didn't mean to come across as "pooh-poohing" how folks here treat CC. I'm just trying to come to grips with how, after years of eating high-gluten food, I'm still going to wind up probably being okay as long as I in the future follow a strict GF diet; but if I have a crumb of gluten via CC after I go on my GF diet, it's cause for huge amounts of alarm? That's what's confusing. I mean, I hear what you're saying; I accept that you are correct in saying "yes, CC is very bad for you", I understand that even slight amounts of gluten can cause damage, and I will do my darnedest to avoid CC myself once I take up the GF diet--I just don't cerebrally understand how miniscule amounts of CC gluten can make much of a difference to my long-term health when compared to the vast quantities of gluten foods I've been eating for so long.

But I'm new here, and I totally understand that I've got a lot to learn....I'm sure it'll all become crystal clear to me at some point Sorry if I came across as rude or insensitive...I don't handle stress like this as well as I'd like to.

I'm reading the Boot Camp thread....I vote for that to be a sticky in this forum. HUGELY helpful info there.

Finally--I did see the thread about your silent CD friend. I know that must've been very hard--I went through a similar thing with a younger friend who had quit smoking and then resumed it. It's a hard thing to deal with when it comes to a close friend. I thought your letter was absolutely spot on, for what it's worth...well done.

--Dave