New Diagnosis And Never Had Gi Symptons, Still Do Not

[jason's mom]

Hi

Just found out this week from blood work and postive biopsy that I have celiac disease. I am in disbelief! No GI distress-just really anemic. Is is OK to have occasional treat? Dietician said way you know you "bumped" into a forbidden food is the celiac gets GI distress, but I do not. Since I have no symptons is it really going to be a problem. I can not imagine never again having a slice of my favorite pizza, or a slice of birthday cake etc? I just can not stop crying. Even as I write this I am starting to cry, can anyone give me some hope, cause I really need it. It feels as if my life is over and this is so unlike me. I really would appreciate it if someone could give me some information. The reading on foods is so confusing. I like Rice Krispies and thought OK this person told me they were ok and so did one book I bought and then the dietician told me no cause of malt and back we went to symptons talk- she just did not seem to get I feel fine and have no negative symptons. Thanks for letting me vent and I sure hope someone can help me out! This is so awful right now to feel this sad. Bye Jason's mom

[teebs in WV]

Hang in there! I was the same way. I had NO GI symptoms at all. If I wouldn't have had the DH outbreak, I would have never found out that I have celiac disease! I know it is very hard, but you have to try and remember that this is not the worst thing that could happen to you. I have bad days too and am still trying to manage through this. Everything I have read indicates that you should not cheat. Even one crumb can instigate the autoimmune response. Just because we may feel OK does not mean that damage is not occurring. The funny thing is, now that I have been following the gluten-free diet for 2 months, I am now feeling GI effects if I accidentally ingest something with gluten.

[skoki-mom]

Well, I pretty much could have written your post, except I don't have any anemia either. Kind of a long story as to how I came to be dx, so I will spare you. I'm not a great help at the moment as I have been very depressed the past 2-3 days, although I will say all in all it's really not so bad. I'm 36, dx just before my 36th birthday (about 3.5 months ago). I sort of take it one meal at a time, and no, I do not cheat. I haven't challenged myself, so I don't know if I'd have a reaction, but on the 2 occasions I know I accidentally ate gluten, I felt no effects whatsoever. Anyhow, if you want to e-mail me you can, I know how you feel. ((hugs))

luv_my_2_girls@hotmail.com

[rmmadden]

I, too, didn't have any GI symptoms before being diagnosed. It just sort of one-day appeared and boom....celiac. Well, it's been one-year since my diagnosis and I am feeling better. We all know how tough it can be to start being gluten-free. And, the progress can be slow especially at the beginning.

We all get the cravings for our favorite (Past) foods....But, DON'T CHEAT!. Cheating only makes things worse even if you don't show the "classic symptoms". Unfortunately this lifestyle is pretty much and all-or-nothing deal. Once you get better acclimated to the diet you'll see that it isn't as bad as you think. It's still not easy for me after a year but, it's not as bad as I first imagined it to be.

Hang in there!

Cleveland Bob

[IronedOut]

Glad to see so many response to this question that I was afraid to ask. I'm at the same place as Jason's Mom (and now buying stock in Kleenex). Until I hit rock bottom with the anemia, I didn't have any noticable symptoms. How hard it is not to cheat just a little when you don't feel any backlash. My big struggle today is how to feed my family things they like and not make them feel like they have to be deprived as well. When does the deprivation depression wear off? Ever? Please say yes.

[Ursa Major]

Jason's Mom, anemia is a very common symptom with Celiac disease (I had that as well), which would make you quite ill in the long run. Besides the fact that undiagnosed celiacs who eat gluten have a many times magnified chance of getting cancer somewhere in the digestive tract (my grandmother died of stomach cancer when my mom was 20, and my mother died of liver cancer at the age of 66, and I know my mother had all the same symptoms as me, so had undoubtedly Celiac disease).

So, look at it as a cancer preventive diet. People will do radical things to prevent cancer (I have met women who had mastectomies because breast cancer was running in the family), being on a gluten free diet must be one of the easier cancer preventatives!

My family thinks that the food I cook is just fine, I just don't mention gluten free (and now many-more-things-free), and they don't even remember. Experiment, buy a crock-pot (if you don't have one already), it's perfect for cooking easy, gluten free meals, that everybody loves. Bake gluten free and offer the cakes/cookies/whatever without saying anything, and they might not even notice. Don't drive yourself nuts cooking separately for yourself! Or at least only occasionally.

All the best, and yes, it gets easier.

Ursula

[Claire]

SMALL AMOUNT OF GLUTEN!

Oops. Here I am again to groan over any indication that a small amount of gluten may slow down progress but only do "a small amount of damage". The example a neurologist gave me will be offered here yet again. A grain of gluten put into a petri dish with a drop of blood from a celiac patient will initiate an almost immediate reaction that can be sustained in the sample for days - even weeks. You do not what body cells being affected when you ingest gluten - eyes, ears, muscle, brain - take you choice. The neurological damage done by gluten is proven and very scary. I went on a gluten restricted diet 15 years ago. I did not know that gluten was an issue. The issue was only identified as grains. So I stopped eating bread and flour saturated foods but that was the limit of restrictions. I eliminated enough to relieve the symptoms - not enough to eliminate the neurological damage that is now messing up my life. Gluten is neurotoxic. Accidents may happen but otherwise, in the interest of your future health, go gluten-free all the way. Claire

[aljf]

The past few days I have gotten off track and have been cheating left, right, and center. Cookies and bread at work, cookies as I walk home, candy that's unsafe... I keep telling myself each day that I will stop, but here I am binging on this stuff again. I am having a lot of trouble getting back on track. Have I set off some horrible craving reaction by starting with this stuff? How do I stop this?

[Guest nini]

The past few days I have gotten off track and have been cheating left, right, and center. Cookies and bread at work, cookies as I walk home, candy that's unsafe... I keep telling myself each day that I will stop, but here I am binging on this stuff again. I am having a lot of trouble getting back on track. Have I set off some horrible craving reaction by starting with this stuff? How do I stop this?

You know you have to stop. Just do it. Gluten is poison PERIOD... keep telling yourself that. Even if you aren't feeling any obvious symptoms from it, yes you are doing damage to yourself if you have celiac... More than likely yes, you are having addictive like cravings and will have to go through a withdrawal period. But you know you have to do it. Just do it.

[ravenwoodglass]

Hi

Just found out this week from blood work and postive biopsy that I have celiac disease. I am in disbelief! No GI distress-just really anemic. Is is OK to have occasional treat? Dietician said way you know you "bumped" into a forbidden food is the celiac gets GI distress, but I do not. Since I have no symptons is it really going to be a problem. I can not imagine never again having a slice of my favorite pizza, or a slice of birthday cake etc? I just can not stop crying. Even as I write this I am starting to cry, can anyone give me some hope, cause I really need it. It feels as if my life is over and this is so unlike me. I really would appreciate it if someone could give me some information. The reading on foods is so confusing. I like Rice Krispies and thought OK this person told me they were ok and so did one book I bought and then the dietician told me no cause of malt and back we went to symptons talk- she just did not seem to get I feel fine and have no negative symptons. Thanks for letting me vent and I sure hope someone can help me out! This is so awful right now to feel this sad. Bye Jason's mom

It will get better, don't cheat on this, don't think of it as a diet think of it as a 'save your life-style'. You may also be experiencing withdrawl symptoms, these are tough but they do go away. Once you are fully gluten-free you may find things that were being effected that you didn't even realize. It will get better and I hope it does soon. And you will have pizza and birthday cakes, they just won't be made of poison.

[Guest nini]

one thing that really helped me was to find something really yummy and decadent that just happened to be gluten free and allow myself to have as much of that as I wanted... my first splurge was Aunt Candice's Chocolate Chip Cookies...

[Guest schmenge]

In my case it was also unexplained anemia that led us down a path where Celiac was discovered. So I wondered how I would even know if I got glutened since my goal was to be 100%, no cheating. About a month into it I got glutened. About 45 minutes after lunch I was bloated, cramping and gassy like never before. I checked and sure enough found barley malt as an ingredient. I am lucky in that I was only uncomfortable and only for a few hours as opposed to the pain I know my Grandmother used to get.

I suspect that once my body was "de-glutened" I've become more sensitive.

[kathy1]

Hang in there Jasons mom. I was also overwhelmed when my husband was DX in Dec and my 8 yr old son a few weeks ago. Both are like you and have no symptoms. Although it is wonderful that they are not sickened by eating gluten, it does make it considerably more difficult to know if you have accidentily ingested some. The only thing I can tell you is what we are doing and that is to study and learn as much as possible. I know that mistakes will happen especially in the beginning, but as we learn more and more I am hopeful that we will have no more accidents! I don't think that there is any clear way for asymptomatic patients to ever really know.(Is there?) It is a long journey that I am just beginning, so Jasons Mom, you have good company here. I did not realize until reading this message that there were so many others here without symptoms. I thought my family were the odd ones. Looks like we are not so odd after all.

I would suggest buying some reference material. I read Dangerous Grains and just ordered Wheat Free/Worry Free. I just ordered the whole assortment of pocket guides to carry with me from Clan Thompson, so I will always have my reference info with me. That and continue to post and read here. And contact companys of items you use frequently and ask them if their products are gluten-free. I am finding that with the right research, you will find you can cont to eat most of the same foods. If you have a Whole Foods and Trader Joes' near you, you canbuy most things gluten free in their stores. I have to drive an hour and a half to get there but its worth it!

Good luck, you are in my prayers and stay in touch here. we care.

[Guest missyflanders]

I too was diagonosed after having limited symptoms. I did the diet pretty well for a year then completely quit, then became quite anemic again and feeling pretty crappy and tired all the time. I just started the diet again about a month and a half ago. I still have problems with wanting to cheat, but I have a gluten-free bakery near by and have a couple a gluten-free staples that I have found that I really like. I cook gluten-free meals, but still have non gluten-free snacks in the house for my kids and dh since they have so far tested negative. That is where my problem is. I try to only buy snacks that are not my favorites. Things that won't tempt me so much. I also allow myself ice cream just about daily, my special treat. I am getting to the point where I don't need a daily nap, so I think it is helping. Just hang in there, it will get easier.

Missy

[Random Guy]

no symptoms here either

gluten free since 1/1/6

diagnosed by blood tests

tested because my mother was diagnosed (no symptoms either)

for me, gluten free can be fine at times.

befoer all this, i was a pizza freak, pasta and bread constantly, commecial cereal every day.

but when i'm eating at home, there's plenty of food that i can eat that i LOVE!

i've stayed away from most of the specialty stuff, except for gluten free cereals from a health food store and some exhorbenently priced pretzels, oh and some teryaki sauce, and some rice pasta, but mostly just plain old food that everyone eats anyway

i'm never hungry - at least not after eating

but i'm filling up on things that are better for me compared to what i used to

the tough part is when i travel

i was away for business for 5 nights and by the 5th night i really was tired of interogating waiters.

i was soooooo happy to come home and have salad, brown rice, baked chicken, and veggies.

i think i've been sticking to the glutenfree requirements, but without having any symptoms, i have no idea if i'm getting glutened

i don't want to develop symptoms in orger to find out either

i guess what i want isn't important though.

what i wouldn't give to eat anything but jello right now - endoscopy and colonoscopy tomorrow can make you really desperate for ANY food today

i wonder what my point was....

oh, yeah, sometimes it's not so bad being gluten free. that was it

hang in there -

have an sweet juicy orange for me tonight -

mmmmmmmmm

-rg

[kathy1]

I am amazed at the number of people on the board that are asymptomatic.!! I never would have thought there were this many here.

[debmidge]

My husband has celiac disease and I believe his father had it (passed away from anemia at age 80 and coincidentially while in nursing home, wasn't diagnosed with celiac disease but one of the problems was that the feeding tube food was passing thru him undigested. hmmmm and this was 4 years before my husband knew he had celiac disease so we feel it ran/runs in family).

Anyway, I feel that husband's sister has silent celiac disease too as she complains of having some stomach upset, many bowel movements per day, doesn't gain weight, has osteoporosis (age 53), some gas/belching, complains that it's eating beef that upsets her stomach. I have spoken to her Dr., and he pooh poohs it as celiac disease, but yet doesn't ask HER what she's telling me. He's a good doctor, if you're dead (I have had other issues with him as my mother in law goes to him and another family member who died unnecessarily while in his "care.")

[ravenwoodglass]

Anyway, I feel that husband's sister has silent celiac disease too as she complains of having some stomach upset, many bowel movements per day, doesn't gain weight, has osteoporosis (age 53), some gas/belching, complains that it's eating beef that upsets her stomach. I have spoken to her Dr., and he pooh poohs it as celiac disease, but yet doesn't ask HER what she's telling me. He's a good doctor, if you're dead (I have had other issues with him as my mother in law goes to him and another family member who died unnecessarily while in his "care.")

This isn't silent celiac, she is clearly having symptoms. Perhaps she should be tested by another doctor after getting copies of her records and sue this jerk when it comes out positive.

[CMCM]

One thing that occurred to me reading all these posts is the addictive nature of grain. I believe it's the book "Going Against the Grain" that discusses allergies and sensitivities and additions, particularly with regard to grains. It's very insidious, and once you understand what is going on it will all make more sense. It's strange, but we often get really addicted to the very thing we are allergic to. Grain produces a response that is called an opioid, and it behaves very much like addictive substances. Anyhow, reading this book made me see what is going on in America in general with the massive proliferation of grains in all our foods. And then if you have celiac/gluten sensitivity, all the more worse for you.

[bes]

Hello everyone! Bes from the UK.

It's only in retrospect that you realize you had symptoms. I NOW realize that I have been constipated for x years, that my chronic anxiety was not pnd, that 2 miscarriages were not bad luck, that my lack of energy and drive were not the result of depression/laziness, that ferocious intermittent heartburn was not due to rich food. It's amazing what you put up with from your body, especially as you get older.

[floridanative]

Bes is right! I never even knew I was walking around bloated 24/7 until I went off gluten. I was amazed that I had a waist! I'm small framed and petite so no one can tell I've lost weight but the scale and my clothes don't lie. And I have not gone hungry, just the opposite actually. I've never felt better in adulthood anyway.

I thought my only real symptom was anemia but now that I don't get bloated (even slightly) every other day and don't get 'stomach aches' every other week, I know I was not asymtomatic at all. Now I know I can actually when I have gluten. And I'm soooooooo glad that I should be able to tell if I accidently get glutened as they say. What a relief!

It is now thought that as many as 70% of Celiacs are 'silent' as mentioned above.

Bes by the way are you in London by any chance?