Terrified!

[jadeybear]

Hi everyone. I'm recently diagnosed by blood test (elevated IgA) and awaiting the biopsy. I am 36 and started feeling awful about 10 months ago after having my son (post-partum). For most of my life I've felt great - sometimes a little tired and have always had low iron (but never anemia). I've always been a thin woman - but thought I was healthy.

I will try and stick with a gluten free diet (mourning the loss of delicious cake and eating out anywhere I like, and even travelling)....but....I'm SO TERRIFIED that I will (or maybe even already HAVE) that awful lymphoma of the gut that has a poor prognosis. I'm scared about this because it took me 36.5 years to discover I have celiac, so 36.5 years of damage have been done. On a blood test done last Sept I had low neutrophils, but on two subsequent blood tests, all have been normal.

Has anyone else had "silent" celiac all their lives and now have cancer? Is it too late for me? Am I doomed?

Sorry if I'm sounding overly dramatic...but seriously, I'm terrified!!!! My mom died of bile duct cancer when she was 26, and now I'm thinking that it was probably due to celiac (don't know if she had that...never diagnosed).

I sure could use some words of reassurance. Are we all doomed?

Thanks!

[WendyG]

Hello and welcome to this forum. You will find tons of great information here.

I too was diagnosed after the birth of my son (third child) I was 30 at the time.

I was exactly like you a bit anemic but nothing serious and no other symptoms. Than bam after delivery I lost

over 20 pounds in a month.

I understand your fear. I have lost many members of my family to colon/liver cancer. I want to tell you

that I did follow the diet for a while after I was diagnosed then after I felt better I went off. This is something I am not proud of. After I went off my diet I didn't get sick again so I thought I was fine. Fast forward 5.5 years and I have bone loss, thin hair, sever anemia, and malabsorption... Now I am gluten free for life.

I have just had my three children tested and one came back with a positive blood test for Celiac.

I want to encourage you that you can do this. There are so many food choices and you can even eat out again, with a little research.

Take care and welcome

Wendy

[jadeybear]

Thanks Wendy,

Thankfully I can cook - I really enjoy experimenting and I've never been a huge bread/pastry fan. I'll miss convenient foods on those busy days - easy takeouts and/or bottled marinades. I hope at least SOME bottled sauces are safe!

The worst thing about this whole mess for me is the fear about getting or having cancer. I can adjust to the diet...but is celiac disease a death sentence? Because we were diagnosed so late, are we more likely to get the cancer?? Maybe we really damaged ourselves when we didn't know??? Or is it more likely that the disease really started to manifest and do damage postpartum? I was hoping to have another child, but now...I don't know :*(

[WendyG]

Ya know I just worry about today and the things it will bring. Don't waste you energy on what may or may not happen. My grandmother has celiac and has never been gluten free or diagnosed. She is now 83, and has alsheimers.... are we really safe from anything????

Oh sweetie don't let this change you plans on having children this isn't a death sentence. I was thinking about this very thing this morning getting ready. Would I have not had one of my three children if I would have know about celiac first? Oh course not. Its a very healthy diet and now that you are diagnosed you can have your children tested and watch them closely.

Just hang in there, read the forum ask questions, do research, and you will get the hang of your new lifestyle.

Just keep swimming~Dori Nemo

Wendy

[Ursa Major]

Just do your utmost to be gluten-free, and within five years of being on the gluten-free diet your chances of cancer will have gone back down to be the same as everybody else's.

I didn't figure it out until I was 52, and my grandmother died of stomach cancer in her forties, and my mother of liver cancer when she was 66. I know that they both had celiac disease now.

I have two more years to go before I can say I am relatively safe. Most of the time people with undiagnosed celiac disease won't get cancer until they are in their sixties, not thirties. Think positive, I am sure you will be fine.

[curlyfries]

As far as marinades go, I have found great spice rubs that I now prefer more thany any marinades I ever used.

Death sentence?...The only stories I have heard with regard to dying of cancer are the many many relatives of ours that never got diagnosed. So instead of worrying, you need to celebrate that you have the opportunity to turn it all around and lead a healthier life....a long life. I am 49 and have only been gluten free for a few months. I didn't start having symptoms that I was aware of until a few years ago. So you see, you are lucky......it might have progressed to being more symptomatic, but you have a wonderful doctor and most of us would envy you for that. You have so much to be grateful for. I am confident that I am on the road to preventing myself from ending up like my mother, who died of colon cancer (I am sure she was undiagnosed celiac). I feel so much better now that I KNOW this to be true.

You've made it through the hard part....being diagnosed. The rest ...is an adventure!!!

[gfpaperdoll]

re 83 year old grandmother that has alzheimers. Untreated celiac leads to alzheimers, she is lucky that she did not have alzheimers in her 60's. I am helping a friend of mine that is 83, lives alone & she has been gluten-free 9 days now, well except that a friend brought her some food & she got glutened & has had the usual problems, I do not think she is going to be eating any more "non inspected" food any time soon. I met a friend of hers & she said she noticed a difference right away & was asking me what was so special about her food that was making her so healthy -she said "look at her, even her complexion is better". :)

She was also sitting in my friends house eating fried chicken with wheat all over her fingers - so I then saw where my friend was getting some cross contamination - so I explained to her how her food could make my friend sick - if she so much as laid a piece of her chicken on the cutting board - or handed my friend some of her safe food with out washing her hands - guess I am going to have to post a sign for the wheat loving visitors!!!

after being mostly bed ridden for three years she is now tottering around the house without her walker doing the laundry - not on purpose but she feels so good she forgets she might need it.

back to alzheimers, did you see the warning that the government put out recently about people that have huge protruding bellies are at very high risk of getting early alzheimers? & do you know what causes those huge bellies? wheat & other grains, is the answer... There is about to be an epidemic of alzheimers in this country as the baby boomers are aging & continuing to eat the standard American Diet - high in wheat & dairy.

[AndrewNYC]

Tons of people get diagnosed in the their mid 20s. That's only a decade's worth of difference. You'll be fine.

[dollamasgetceliac?]

What test should the doctor do to make sure that we do not have cancer? What are the symptoms?

[ShayFL]

I recommend you focus on "wellness".....you get more of what you put your attention on.

[NorthernElf]

Don't stop eating gluten !!

That is - you said you are still waiting for the biopsy, right ? Don't stop eating it yet because it could affect results. If your wait isn't too long, maybe not. However, I started eliminating gluten, got a negative blood test, and then had to wait three months for a biopsy. My stupid doc didn't tell the gastro guy to look for celiacs so he just visually checked my intestinal tract (looking for GERD damage). She also didn't tell me to keep eating gluten (I think she has that classic scrawny celiac stereotype in her head). No obvious visual damage but a biopsy - even after being gluten-free at this point - may have showed something. Now I can't have a true celiac test because I've been gluten-free for 4 years. Gluten is DEFINITELY a problem for me - more so now than then.

Anyway, part of me wishes I had a doc hand me over a 'certified' diagnosis but it's not possible now. Of course, if I feel like I have the flu and a hangover and need to run to the bathroom shortly after ingesting gluten, I guess I know anyway.

[Leslie-FL]

Of course, if I feel like I have the flu and a hangover and need to run to the bathroom shortly after ingesting gluten, I guess I know anyway.

There is no mistaking our gluten symptoms, is there? I'm amazed at how clearly obvious it is, every time.

To jadeybear, I agree with the poster who said to focus on wellness. I understand your fear, but always remember that the human body has remarkable ways of healing itself. Now that you know what is wrong and will be able to remove the food items that have been harmful, your body will be able to begin healing. Every day, just picture your insides becoming healthier and stronger. You will feel better and better as time goes, and I'm willing to bet a lot of your fears will start to go away.

[Karli]

Dear terrified, I can not tell you NOT to be frightened but try to stay calm and enjoy your baby.... while awaiting test results.... It may well be that the birth of your child "triggered" your celiac disease to an active status and that you have not been actively celiac for any where near 36 years.

I was recently diagnosed with Celiac disease at age 68.... I think my trigger was mono at age 17... I have flat villi ... also I have no cancer of bowel afer total scans and several biospies..... .... and no other typical malabsorption maladies.... my joint aches and pains may or may not be related to Celiac disease.... so do not write your self a death sentence.... learn the facts and keep calm...

[mushroom]

Another 68-year-old, self-diagnosed 6 months ago. Still alive and kicking and planning on being around for a long time Smoked from age 17-29, just glad I stopped without worrying about what had already happened. Enjoy today and tomorrow will take care of itself.

[sickchick]

BREATHE! Don't think about the worst...

you will make it happen, focus on positive things and imagine yourself healthy and happy

but take your diet SERIOUSLY...

you do have that much control.