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canadave

Newly Diagnosed--scared, Confused

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Hi all,

I was just diagnosed with celiac three days ago via a positive tTG blood test, after suffering what I now suspect were celiac symptoms for about four or five years (I'm now 36). My doctor is in the process of scheduling me for an endoscopy to confirm the diagnosis, probably occurring sometime in July or August. I asked what I should be doing until that time, and the doctor said that he felt I should continue on my regular diet so as not to obscure the test. My symptoms are mild enough that it's no problem for me to continue my regular diet (i.e. I have mild constipation, some depression, some fatigue, but it's not like I eat a crumb of gluten and immediately have to run for a bathroom or anything like that).

Right now, I'm having a lot of trouble adjusting to all this mentally. I was in tears and practically out of my head for the first couple of days--thank goodness my wife is tremendously understanding and supportive (we have no kids and never can, BTW). For starters, if gluten exposure leads to all sorts of horrible diseases and problems down the road, then how am I going to be able to save myself with a gluten-free diet now? Surely four or five years of exposure is enough to start whatever problems are going to occur?

Even if not, then the idea of continuing to put gluten in my mouth for another three months, knowing it's almost certainly poisoning me, is frightening. I'm barely eating at this point....I had a sandwich the other day and was almost ready to gag at the idea of it. Then too I feel this awful sense of loss....for instance, pizza is one of my favourite foods (I grew up in NYC and practically lived off pizza most of my life...I make an incredible homemade NY pizza that's taken me years to perfect). If I eat regular pizza between now and the day I go on my gluten-free diet for life, I don't know if I can mentally handle it. I don't know HOW to mentally handle it.

Next, I don't know how to react to accidental glutening once I go on the gluten-free diet. I mean, how much accidental glutening has to occur before all these horrible lymphomas and other autoimmune diseases rear their heads? That stuff scares me no end.

I'm also unsure about eating out. I've read a ton of stuff about celiacs eating out....it seems to me that if you really want to avoid cross-contamination, then the only safe bet is to stay home completely unless there's some place that you absolutely know is completely on a dedicated gluten-free food programme. I mean, what's the point of having gluten-free food at a restaurant where they're also serving non-gluten-free foods? Aren't you almost guaranteed CC at that point?

On the other hand, I don't think I can live without eating out with my wife occasionally. I can't live as a shut-in; the prospect is almost as bad to think about as the lymphomas. But then there's the CC fears.....

As you can see, I'm just going around and around with this. I'm alternating between sobbing in my wife's arms to having a "it won't be so bad" attitude....I just want to be able to leave a normal life where I can be aware of gluten, concerned about it, and avoid it....but not so concerned about it that it ruins my ability to travel with my wife and socialize with her.

Sorry to rant....just going through a down moment here :(

Dave

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Hi Dave,

I was initially diagnosed with Lymphocytic Colitis and then a biopsy confirmed that I also have Celiac. When I was first diagnosed I wanted to curl up into a ball, stop eating and starve myself to death. I thought this would be far more humane than having to adjust to a gluten free life. It seemed impossible to me that in the year 2007, when almost every single prepared food includes some form of gluten, that I could have this disease and not have ever heard of it.

I went through a rollercoaster of emotions, and it took months before I could finally accept the diagnosis. Initially, I was devestated and depressed at the thought of what I would be giving up. After this faze, I was frustrated and angry, and must admit, felt quite sorry for myself. On the few occasions where I had to eat in a restaurant, or attend a luncheon, I had to fight hard to hold back the tears, and rarely was I successful.

It has been sixteen months and I am amazed at how I have not only accepted the diagnosis, I am actually fine with it. I cleaned out my cupboards and got rid of anything containing gluten, bought a new toaster, found a great bread recipe that was easier to make than yeast bread (no kneading), and learned to shop using my celiac dictionary. It turns out that you end up eating healthier. I have found a lot of great BBQ sauces that are listed as gluten free, a wonderful salad dressing line (Renee's Wellness), and other products that allow me to continue making some of my favourites like breaded eggplant, meatballs with bread crumbs, etc...

It really does take time, but you will learn to live with this disease. I recently told my husband that I would have been the first to stand in line and risk my life to try a new pill or potion in order to get rid of the celiac disease, but no longer. I have accepted this lifestyle and it is mainly due to the fact that it almost forces you to eat healthy. It keeps my weight in control because I tend to stick to full muscle meats, salads, rice, fish etc.. I make a knock-out pizza using the corn tortilla crusts. They are thin and stay crispy when baked.

Before celiac disease, we ate out quite a bit. I still find eating out to be bothersome. By the time I speak to the restaurant manager, explain cross contamination issues, etc, I still cannot be sure if there is gluten present. I sometimes have known for certain after eating out that there was indeed gluten in something and have had no reaction, other times I have had a reaction the following morning, or hours later. I think every celiac will have different reactions at different times. I now go to restaurants where they know me and where they have taken the time to make certain that my meal will be handled properly. I will order a pure beef hamburger patty with lots of fried onions, fried mushrooms and topped with mozza and a side salad, for example. Fish and steak are also great choices.

In a nutshell, give yourself time to grieve. You are grieving the loss of the only lifestyle you have ever known. You are losing a lot of the comfort foods that you have always loved. You are taking on a daunting, challenging, time-consuming task to learn how to eat for the first time as a celiac. It will be hard, but if you are as lucky as I am, you will come to realize that being forced to carefully examine what goes in your mouth, is in some ways, a blessing. I still battle severe bowel problems due to the colitis, and wonder how on earth it all came to this, but with gluten out of my diet the serious side effects of untreated celiac disease are something that I worry less and less about.

Good luck.

Pinkypal

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Hey Dave,

I was diagnosed in October of 2007 and had many of the same feelings you are having now. You've found this site faster then I did thought as I've only been on for about 2 weeks. We are both about the same age so I can relate to your sorrow. The one thing I can tell you is that this will better your life. Once the initial shock is over you will start eating more healthy and understand better about what you are eating. I lost about 35 pounds in the first couple of months. I also starting feeling much better. I've taken a couple of steps back but am now on the road to getting better again. Eating out will take some getting used to but you will get used to it. Celiac is becoming more and more understood in the resaurant business, at least here in NY.

I miss Pizza too. I also miss Beer. There are some gluten-free beers but they're not as good to me.

I'm curious though as to why you can't have the endo done sooner. I'd be pretty upset if I know I was a celiac but coudn't go gluten-free until months later.

Chris

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I know it's hard to keep eating gluten at this point but I'd really encourage you to do it. A clear diagnosis can make life much easier sometimes (I don't have one, btw,).

On the positive side waiting for the biopsy gives you time to do research into celiac and gluten free eating so you're all set to go once you've had the biopsy.

It's a roller coaster of emotion in the beginning, but I think part of your difficulty is that you're not actually gluten free yet and so you can't actually really try out practical solutions to all those questions. It might turn out to be easier than you fear you know.

Once you have been gluten free for a while, your body will most likely heal itself and fill up any nutritional deficiencies. Once that has happened you're just as healthy as an average person.

Pauliina

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Dave, I think waiting three months for a biopsy and to keep eating gluten for that long is unacceptable. You may want to call your doctor and tell him that you can't bring yourself to keep eating gluten for that long, knowing that it harms you further. And to please make it possible to have the endoscopy/biopsy sooner.

Another problem is, that those biopsies are far from foolproof, and result in quite a few false negatives. A positive biopsy will confirm the diagnosis, but a negative one can NEVER rule out celiac disease.

So, if it was me, I would wonder if it was worth it to keep poisoning myself for another three months for something as uncertain as a biopsy.

Once you start the diet, if you really have celiac disease (and the best confirmation is, if you feel much better on the gluten-free diet), it will take about five years being 100% gluten-free (with occasional glutenings, which are unavoidable) before your risk of intestinal cancers will go back to being the same as everybody else.

I believe the fear of being glutened and as a result refusing to ever go out is worse than the risk of being glutened. All you can do is being as careful as possible, without getting too paranoid.

Mind you, while you heal you may not want to take the risk of going out. It took me a while before I dared myself. I'd give it a good six months, and you shouldn't go out very often (once a month is all I dare to do).

But you and your wife will learn to cook/bake the gluten-free way, and you can make almost all of your favourites gluten-free with a little adaption.

You will NOT have to give up pizza, for instance. There are different ways of making gluten-free pizza, and you will have to figure out your favourite. I imagine that all your toppings are gluten-free anyway. So, all you have to do is find the 'perfect' gluten-free crust, and you are back in business.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thanks everybody. I'm trying to stay positive right now, and intellectually I know in the end it'll work out (it'll HAVE to work out, regardless), but it's so hard to see it right now.

I'm still confused about a few things. I think I've been celiac for at least four or five years (that's when I first noticed what I now know are symptoms), but let's say I'd been celiac since being a child. I know the bit about how 5 years of gluten-free diet lowers the risk of intestinal cancers. *Once someone starts a gluten-free diet*, though, does the amount of time a person WAS consuming gluten foods as a celiac have any effect on their long-term prognosis?

In other words, if two people who are 36 years old start a gluten-free diet today, and one of them is known to have been celiac for 20 years, and the other has been celiac for 5 years, do they basically have an equal long-term health prognosis as long as they stick to the gluten-free program?

Thanks so much everyone....it's being able to talk to others "like me" now that is keeping me sane.

--Dave

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I know it's easy to fret and stew about the past, but you cannot undo it or change it. It is what it is, and your psyche will rest much calmer as soon as you accept that.

What you can do is take control from this day forward. Be grateful you learned now and not decades from now, as has happened to others here. Be grateful you have a supportive spouse. Many do not. Learn all you can by reading and asking questions.

As a positive blood test is diagnostic (there are no false negatives) do some soul searching to see if you really want to do the biopsy anyway. Consider how you would react to a meaningless false negative which would prove absolutely nothing and is a real possibility. If the thought of continuing to knowingly poison your body for months is freaking you out - understandable and it seems that it is - then maybe you should opt not to get the biopsy

Eating out will always be a challenge, but cooking at home will not be. You just do what you do now, only differently. If you enjoy preparing food, you will adapt easily.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Deleted double post.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Just as Sandi says do not worry about the past, try not to worry about the future either. The only moment you have is the one you are living in right now. Do what you can right now and every moment you live in to heal and keep yourself healthy. Worrying about possible cancer in the future will do you no good. You simply face it if it happens and do what you can to prevent it. You cannot do anymore than that.

I know every time I get behind the wheel of my car, statistically I could be killed driving to the grocery store. But I do not worry about it. I have to shop. So I go. A life driven by fear is no life at all. You gotta live!

Remember 9/11? For awhile we were all scared to go to malls, sporting events, airports, etc. But it does pass. This will too. You are on the right track to optimal health. Focus on that and know you have friends here to help out. :)


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Dave,

My son was diagnosed with Celiac in December. He turns 9 next month. So recently I've had to deal with what you're going through, only as a parent (and many times I wished it were me not him). I know this will sound a little crazy to you, but you have so much to celebrate! The symptoms you described may sound "mild" to you now, but as you heal you will undoubtedly begin to feel really really good. My son never knew what it was like to feel healthy (I believe he has had Celiac for 8 years). It is so amazing to see him now. Crazy things like his hand writing improving, moddiness disappearing, energy level going through the roof, and so much more.

When we tell people about him I often get the, "Oh that must be so hard." To which I always reply, "Life before was hard. We just didn't realize it. This is easy."

Don't worry about eating out. At first you won't want to. It will be scary (we are still in the scary stage B) ), but many, many Celiacs eat out EVERY DAY! You may find you don't want to eat out (I now very much prefer my cooking over restaurant food) near as much as you used to.

Our family is gluten free at home (my husband still eats out at work and will eat whatever is convenient). I have absolutely no problems with the diet. I don't have to eat the same food my son does. I don't have to keep a gluten free kitchen, but I do. I don't mind it in the least. What I'm trying to say is that this diet isn't something to dread. We eat really well. In some ways we eat healthier (home vs. restaurant, more produce, more aware of ingredients in food - you're not going to believe the crap you have probably been calling food all these years! :o ). In other ways we eat less healthy (I seem to always find an excuse to make chocolate chip cookies, cake (I even made myself an amazing gluten free Mother's Day cake - yeah, I can have flour and I thought my son would hate the cake, but I had it at a Celiac support group meeting and it was AMAZING!), pancakes every weekend, etc. At a restaurant I would never have ordered dessert. At home we seem to have them quite a bit! Anyway, don't be scared by the diet. It takes some learning, but after a month or so it starts to click and it really does become second nature.

As for your biopsy schedule, I couldn't have waited that long for my son. And now knowing how accurate the blood test is, I wouldn't wait if in your shoes - but that is purely my opinion. I would definitely discuss it with your doctor further.

Stick around here. There are lots of people to help you along the way. And we ALL have ups and downs. That's OK. Cry through the downs (or scream or pout or do whatever feels right for you), but then pick yourself up and get on with the best life has to offer!

Oh, and you mentioned eating out with your wife...as a wife I can tell you you don't have to go to a restaurant for a wonderful evening out. Not that you can't go out (you WILL eat out!), but there is so much you can do at home. A picnic in your backyard in the summer, dinner on the living room floor with a movie, supper in bed, cooking a new recipe together with a lot of laughter and love, make tacos/burritos and play spanish music or put on some reggae and try out a crazy Caribbean type of meal. A restaurant is just a place. It's not what makes the event special. We do many of the above with our son (I assume yours will be more romantic), but he loves to eat on the back patio and then play board games. Dinner on the coffee table while watching a movie is a huge hit.

Here's to your new healthy, happy life!! Congratulations on the first step!

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Hi Dave,

Discuss with your doctor that you feel the wait for the biopsy is unacceptable, but I am the odd one out on this issue. The gold standard for diagnosis is biopsy. Period. You are so close to having one done it would be a shame to remove the gluten at this point, when it is very possible your doctor could put you on a cancellation list in order to have it done sooner, or move the appointment up because he realizes your level of anxiety.

I agree that the bloodwork for detecting the possibility of celiac disease has come a long way. However, it is far from perfect and I am living proof. I had at least four negative bloodtests and the biopsy confirmed that I am celiac. If the bloodwork was so reliable, it would have picked up my celiac. Therefore, since there is no perfect science, I would think that you would be prudent to wait for the biopsy. If it turns out negative, and you have been feeling lousy for so long, go gluten free anyways. It may well be that you are gluten intolerant. Wait until the biopsy is done, then go gluten free regardless of the results. Your aim is to feel better and removing the gluten from your diet is well worth the effort.

Pinkypal

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I had at least four negative bloodtests and the biopsy confirmed that I am celiac. If the bloodwork was so reliable, it would have picked up my celiac.

Pinkypal

Was your blood test actually "0" antibodies? Because if not, it did detect celiac and was not recognized. Blood tests are notorious for false negatives but do not give false positives. Biopsies can miss the damage. Yours didn't, but it is truly "hit and miss."

Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Dave, think of yourself as a refugee who has escaped from The Land of Gluten. Just like a political refugee or someone who escaped from religious persecution, you can never go back because to do so would be deadly.

Yes there are things you will miss, but you have your wife and your health and you can start over. :)


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Hi Sandi!

I did not get a biopsy. My bloods all detected "1" for EMA, tTG IgG and IgA, AGA both IgA and IgG. All "1"s. Negative for both Celiac Genes. Positive gluten sensitive through Enterolab. Double Gluten Sensitive Genes. Do I have celiac? I am gluten-free based on Enterolab.

Sorry to hijack.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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What you are going through is TOTALLY normal.

I mean, who - if they don't have this in their family - ever thinks about wheat being *bad and scary* when they're growing up?!

It's a full-on grieving process (those five stages, you know?) to go through. And it's cyclic, so it's not like you do it once, and BAM! you're done. But you'll get to feeling better (mentally) about all this. You'll go through a learning process (and it IS a process), and it'll start to gel in your head. It might take three weeks, it might take three months, it might take three years. (You're body is pretty resilient; it's not going to keel over in that time.) But you'll find YOUR path.

(I'd offer specific advice, but I don't have the hour it'd take me to write it out, and the best place to start is to read, read, read, let your brain distill some information, then go. And you're getting those questions answered by a lot of very helpful people already. :) )


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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well, dave for starters your "roller coaster ride" is over so there is your silver lining to this dark cloud ;)

Now you get to be in control of your health more than most people in the world are, you also get to learn more than most likely even your doctor knows about your condition!

First if you decide to wait for the rest of the testing you can spend that time learning about what foods you love are already gluten free, if they aren't then you can find other brands etc.

no matter what your choice you and your wife will be having a food learning curve, dont get discouraged we all went thru it to some degree and since we are replying to your post... we did survive (lol) and so will you.

read, learn and expose yourself to all the valuble information you can find and learn to live a healthier happier life!


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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