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my3kids

Overcome With Worry

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I was diagnosed with celiac disease in November, 2005 by accident (no symptoms at all). I tried to adhere to the gluten-free diet and decided then that I didn't need to do that as I was asymptomatic. Denial is powerful.

My daughter was diagnosed approximately 3-4 weeks ago and I am now adhering to all the rules for both of us. I realize that the last two years of noncompliance was so stupid of me.

I called my doc today and received the results of the original biopsy done in November, 2005 that showed "severe villous abnormality and crypt hyperplasia suggestive of celiac sprue". I am TERRIFIED that due to my noncompliance, I probably have caused some type of cancer that is associated with celiac disease.

I can't stop crying for myself and my daughter. I was diagnosed with Type 1 diabetes 11 years ago and never cried as much as I have cried over the last few weeks.

Please help me with some type of reassurance. I am grieving over our old gluten lives, I am grieving about this condition for my daughter and I am so scared!!!!

Where do I go from here? I have made a follow-up doctor's appointment with all doctors (primary, GI, endo) for myself and a GI appointment for my daughter. We are strictly gluten-free and have been for 3-4 weeks but I'm wondering if it's too late for it to matter. I have posted here before and have found such hope. I need more. Thanks!


Type 1 diabetes - 7/96

celiac disease (positive biopsy and bloodwork) - 11/05

but not gluten-free unit 1/08 (denial)

Daughter celiac disease (positive bloodwork) - 1/08

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So sorry about you and your daughter's diagnosis.

Try not to let these thoughts continue to torment you. Many of us have had active celiac disease all our lives and were not diagnosed until fairly late in life. I am 54 and was just diagnosed last year. I had been diagnosed with everything from ulcers to ulcerative colitis since my early teens. My doctor did both the endoscopy and colonoscopy, because I had had it for so long and he just wanted to make sure there was nothing else.

While some celiacs do go on to develop cancer, most do not. If you are still asymptomatic, it is unlikely you have cancer.

I have always said I am glad I have such a strong reaction to gluten as it keeps me from cheating on the diet. I can certainly understand how it would be easier to stay in denile if you were asymptomatic.

You are doing the right thing by contacting your doctor and your GI doctor. I am sure you can get another endoscopy to check for any advancing of the disease. Sometimes things happen for a reason. You will undoubtedly be more diligent with the gluten free diet, now that you have your daughter's health to be concerned with.

Once you learn all about the diet and have put it into practice for a while, you will find that it is an inconvenience, yes, but not such a terrible thing. It makes you really analize food in general and start eating a better diet altogether.

Put your anxiety into action and really study, read, plan and start experimenting with making the things you and your daughter will miss the most.

Once I found replacements for the things I really loved, I have been quite content with the diet.

Good luck to you. You will find lots of help here online.

How old is your daughter?


Positive Bloodwork January 2007

Positive Biopsy Feb. 2007

Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

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Realize that the greiving, fear and guilt are all normal feelings. Its hard to go through it, but I'm sure you'll come out of it and get a plan together to follow. You're reality has changed in a hard way, but soon you'll readjust. We all make mistakes and move forward - just be glad you already knew about Celiac before your daughter was dx'd, so you have a head start there . . . and be glad that you got ur daugther to keep you on the straight and narrow! There are so many little silver linings . . you can do this, we all can.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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First off, I'm no doctor but I did listen to mine when he was doing his dictation on my condition...it sounds like your report in laymans terms just means you have Celiacs,not cancer. Shortened/damaged sprue is a result of eating wheat, it does grow back once you cease eating gluten.

You have to be careful with statistics.

I read things like "Undiagnosed Celiac's 54 percent more likely to get cancer"

Well if the cancer rate is 1 in 1,000 then as a celiac who ate the wrong foods its now 1.54 in 1,000. Whoopee :)

A good attitude is as good for your intestines as staying away from the wrong foods. I hope you get a chuckle out of my previous comment, I strongly believe that will do more for your health than a lot of medication.

If your having a tough time with the food try a low carb diet(Atkins, south beach, etc). We switched and it makes things very good and very easy to manage. There isn't much that contains gluten in what they tell you to eat.

The human body has an amazing ability to heal itself. I know this very well. 2 years ago I had a severe reaction to Cipro and I mean severe. Uncontrollable shaking of the hands/arms/legs, I slept maybe an hour a night or 6 months straight. I had muscle pains that felt like every joint had arthritis...my mental state was out of control but no matter how far gone I was I never lost sight of where I wanted to be.

Today I'm perfect again, not a single sign and now I know this was tied into gluten/wheat in a way.

Positive happy attitude and the realization now you know exactly where you stand so you can get on the right path and have the motivation to stay on it.

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First off, I'm no doctor but I did listen to mine when he was doing his dictation on my condition...it sounds like your report in laymans terms just means you have Celiacs,not cancer. Shortened/damaged sprue is a result of eating wheat, it does grow back once you cease eating gluten.

You have to be careful with statistics.

I read things like "Undiagnosed Celiac's 54 percent more likely to get cancer"

Well if the cancer rate is 1 in 1,000 then as a celiac who ate the wrong foods its now 1.54 in 1,000. Whoopee :)

A good attitude is as good for your intestines as staying away from the wrong foods. I hope you get a chuckle out of my previous comment, I strongly believe that will do more for your health than a lot of medication.

If your having a tough time with the food try a low carb diet(Atkins, south beach, etc). We switched and it makes things very good and very easy to manage. There isn't much that contains gluten in what they tell you to eat.

The human body has an amazing ability to heal itself. I know this very well. 2 years ago I had a severe reaction to Cipro and I mean severe. Uncontrollable shaking of the hands/arms/legs, I slept maybe an hour a night or 6 months straight. I had muscle pains that felt like every joint had arthritis...my mental state was out of control but no matter how far gone I was I never lost sight of where I wanted to be.

Today I'm perfect again, not a single sign and now I know this was tied into gluten/wheat in a way.

Positive happy attitude and the realization now you know exactly where you stand so you can get on the right path and have the motivation to stay on it.

Thanks for your words of encouragement and I did get a chuckle out of your cancer statistics. The comments posted are just what I needed to hear and I will continue to seek out this support until I find myself in a better place.

I know that in the long run, it will be okay. But right now, this is just overwhelming. Again, thanks so much.


Type 1 diabetes - 7/96

celiac disease (positive biopsy and bloodwork) - 11/05

but not gluten-free unit 1/08 (denial)

Daughter celiac disease (positive bloodwork) - 1/08

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Realize that the greiving, fear and guilt are all normal feelings. Its hard to go through it, but I'm sure you'll come out of it and get a plan together to follow. You're reality has changed in a hard way, but soon you'll readjust. We all make mistakes and move forward - just be glad you already knew about Celiac before your daughter was dx'd, so you have a head start there . . . and be glad that you got ur daugther to keep you on the straight and narrow! There are so many little silver linings . . you can do this, we all can.

You're right - thank goodness I knew all about celiac disease prior to my daughter being diagnosed. I definitely had a head start and she has heard me talk about my celiac disease so it wasn't so devastating to her when she was diagnosed.

Thank you for the silver lining!!!


Type 1 diabetes - 7/96

celiac disease (positive biopsy and bloodwork) - 11/05

but not gluten-free unit 1/08 (denial)

Daughter celiac disease (positive bloodwork) - 1/08

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So sorry about you and your daughter's diagnosis.

Try not to let these thoughts continue to torment you. Many of us have had active celiac disease all our lives and were not diagnosed until fairly late in life. I am 54 and was just diagnosed last year. I had been diagnosed with everything from ulcers to ulcerative colitis since my early teens. My doctor did both the endoscopy and colonoscopy, because I had had it for so long and he just wanted to make sure there was nothing else.

While some celiacs do go on to develop cancer, most do not. If you are still asymptomatic, it is unlikely you have cancer.

I have always said I am glad I have such a strong reaction to gluten as it keeps me from cheating on the diet. I can certainly understand how it would be easier to stay in denile if you were asymptomatic.

You are doing the right thing by contacting your doctor and your GI doctor. I am sure you can get another endoscopy to check for any advancing of the disease. Sometimes things happen for a reason. You will undoubtedly be more diligent with the gluten free diet, now that you have your daughter's health to be concerned with.

Once you learn all about the diet and have put it into practice for a while, you will find that it is an inconvenience, yes, but not such a terrible thing. It makes you really analize food in general and start eating a better diet altogether.

Put your anxiety into action and really study, read, plan and start experimenting with making the things you and your daughter will miss the most.

Once I found replacements for the things I really loved, I have been quite content with the diet.

Good luck to you. You will find lots of help here online.

How old is your daughter?

She is eight. And actually, she and I have had a few good laughs trying out some of this gluten-free food. Our experience with packaged gluten-free gravy was hilarious and disgusting at the same time. I will definitely take your advice and start substituting our gluten favorites with gluten-free favorites and I'm sure, in time, it will get better.

Fear is my biggest enemy right now and hopefully, after a few trips to the doc and people like the ones I've found here, it won't be so scary. Thanks a bunch!!!


Type 1 diabetes - 7/96

celiac disease (positive biopsy and bloodwork) - 11/05

but not gluten-free unit 1/08 (denial)

Daughter celiac disease (positive bloodwork) - 1/08

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