Does Anyone Know?

[Chowsey]

i was told two and a half years ago that i had celiac disease and i was what i thought pretty much wheat free.. gluten free as well.. i got pregnant in jan 2006 and for some reason thought i was ok to eat wheat cuz it wasnt doing anything to me right then... now my baby is 3 months old and im really in alot of pain. my stomach hurts worse then the first time and i am really tired and moody.. my iron count is REALLY low.. I never looked into celiac disease that much so im not really educated on it. Im only 18 and i just want to eat what everyone else does but now im worried about my chances of getting cancer.. exct... does anyone know the chances? or does anyone have any advice besides im weak and stupid for eating wheat after all that time. Im just really depressed and cant really find any good foods and i dont really know how to follow recipes... please if anyone has advice email me at blonde_chicky18@yahoo.com

thank you

[debmidge]

Well you have to get on track now and my suggestion is to start off like you were a "newbie". Nini, a board member here, has a "newbie" packet. Search for her name and ask her how to get one (she has a website she'll direct you to).

Celiac Board has an internal email system where we can contact each other and you may get some responses thru that system - so check your messages from time to time.

Welcome to the board!

Deb

[missy'smom]

You're not alone. I believe my Celiacs was triggered by pregnancy but at the time I didn't know it. I was in such bad shape after delivery. Really depressed and very weak, etc. I just barely survived everyday for a very long time. I didn't discover Celiacs until 8 years later. If gluten is your problem, then it's important to get on and stick to a gluten-free diet. I feel like I'm finally getting myself back. I sometimes feel that I lost the past 8 years of my life and that my son missed out on having a mom for a big chunk of his childhood. I was a good mom in some ways but wasn't able to be there for him in other ways. It's hard to take care of a baby and even more so when you are sick. Do you have anyone who can help you with the baby so that you can concentrate a little more on helping yourself get better? See if you can find a support group. Call all the local hospitals. I've had to be on two diets for my health, one for gestational diabetes and now this one. I keep it simple. Start with fresh, natural, simple foods that are ok for that diet. Figure out enough meals that work for a week and keep repeating them every week until I'm up to adding in new dishes or ingredients. If you can survive a week, you can survive a month and if you can do that you'll be ready to do more and feeling better. Sometimes when I try to do too much or get too complicated I still have to go back to this plan. Plus, when when we have alot of changes thrown at us this routine can become comforting.

[Chowsey]

thank you guys.. Im just not sure if i should go get looked at again becuase the pain is worse... im worried about cancer and the other serious things you can get...

[shayesmom]

thank you guys.. Im just not sure if i should go get looked at again becuase the pain is worse... im worried about cancer and the other serious things you can get...

I think that it's pretty common to have serious pain become a problem if you're an untreated Celiac who just had a child. Pregnancy takes a lot out of you as does childbirth and motherhood. I had a miserable time after having dd due to mood swings, not feeling well and horrific foot pain that was so bad I thought I had stress fractures in my feet. My dd began having issues with weight gain (she was failure to thrive at around 9 months). She tested negative for Celiac and yet, we put her on the diet anyway and it was miraculous! As I got to reading more about Celiac, I finally began realizing that it is a genetic disorder and that either my dh or I had to have the gene for it. So I put us all on the gluten-free diet. I now KNOW that I am a carrier. My horrific foot pain, mood swings, anxiety, insomnia all cleared up within a week on the diet. Inconvenient or not, you couldn't pay me to ingest gluten ever again. To me, it's just not worth it.

You may find that a lot of your current symptoms will clear up once you get on the diet. And as far as long-term health effects....I think that you would be about 60-70% more likely to develop non-Hodgkins lymphoma as opposed to the rest of the population.

It really would be better if you got back on a gluten-free diet and see if it helps. And it doesn't hurt to follow up with a doctor on your pain issues. That being said, I can tell you that generally, cancer is not painful until you get into later stages of the disease where the size of tumors begin blocking off blood flow to other areas or begins to weaken bones (when it metastasizes). That's part of the reason why it's so deadly. Most people don't feel pain and have only vague symptoms of fatigue in the early stages of the disease. By the time they get checked, the disease has progressed quite significantly. So if this is a concern.....go see a doctor! Your health is your most important asset in life. Don't sacrifice it for convenience.

As for following recipes....you don't really have to. You can just as easily grill, bake or steam a lean meat and serve it with one or two sides of freshly steamed veggies, some whole grain rice and/or a salad with gluten-free dressing. When you get bored with that, you can pick up a copy of Living Without Magazine and try out some of their recipes. The magazine is geared for those on a gluten-free diet (and also addresses other food intolerances). The recipes are great and many are quite simple. Once you learn the basics, it gets to be much easier. It just takes a bit of time and effort. It's like learning to read. Until you learn your ABC's, of course it's going to seem impossible! The more you work at it, the better you'll get at it. No one is born with the ability to cook. It's an acquired skill. I think you aren't giving yourself enough credit. You CAN do this!

Congrats on your new little one. I hope that you feel better soon.

[Ursa Major]

You have a diagnosis of celiac disease. If you haven't been gluten-free, it is no wonder you're feeling terrible. At your age it isn't too likely that you have already developed cancer. Celiac disease can cause you to be in agonizing pain, and you can even die from malnutrition.

Before you bother with more testing and doctors, you really need to try being completely gluten-free, and I bet you'll feel a lot better very quickly.

Here is the link to Nini's website, where you'll find her 'newbie survival kit': Open Original Shared Link Scroll down to the bottom to find the links. It will give you a lot of information on what is gluten-free and what isn't, and will help you with shopping and cooking.

At this point, you would do well to eat only meat, vegetables and fruit, which are naturally gluten-free. Also, because you sound like you might have a lot of damage to your intestines that needs to heal, it is advisably for you to also eliminate all dairy (all dairy meaning milk, cheese, yogourt, sour cream.......everything made from milk). The reason is, that your villi are probably quite damaged, and the tip of your villi is what produces lactase, which allows you to digest milk (unless you're intolerant to casein, and a lot of people with celiac disease are, in which case you can't ever have dairy again).

You can try in about six months to see if you can tolerate milk.

You need to buy yourself a new toaster (and you can get them for $10.00) for your gluten-free bread, if you are going to eat some. Make sure all your personal care products, like shampoo, conditioner, lotion, soap, lipstick, toothpaste etc. are gluten-free. Look for things like wheat germ oil, barley extract and oat bran, and replace all the ones that contain those. Also, check your vitamins for gluten.

Gluten is not just in wheat, but in rye and barley as well. And oats in America are generally not safe, as they are usually contaminated with wheat, because of processing in the same facilities as wheat.

If you got diagnosed when you were only 15 or 16, then somebody didn't explain things right to you if you thought it was okay to still eat some wheat. You were only a kid, and not responsible and knowledgeable enough to handle it all on your own. So, you're not entirely to blame for not following the gluten-free diet properly.

But now you are considered an adult, and you need to take the responsibility for yourself, and for your baby as well, and make sure you get better. I know you can do it, and coming here was a great first step in that direction.

Remember, not even the tiniest amount of gluten is okay. In the case of celiac disease it is all or nothing. Just cutting down on gluten is not enough, you need to eliminate ALL of it from your life.

I hope you have some support out there to help you with this. Let us know how it goes!

[Chowsey]

thank all you guys again! its helped me with just the info you guys have gave me! im ready to give it up for good this time! i have found a store about 35 mins away from my home and the whole store is gluten and wheat free!! im really excited because i belive that will be a great start for me! and a lil bit of virity in the begining! and i love meat and veggies! so i think ill do ok and im going to do this all for my son! hes my drive!

Whats the chances he has celiac disease too?

[ravenwoodglass]

thank all you guys again! its helped me with just the info you guys have gave me! im ready to give it up for good this time! i have found a store about 35 mins away from my home and the whole store is gluten and wheat free!! im really excited because i belive that will be a great start for me! and a lil bit of virity in the begining! and i love meat and veggies! so i think ill do ok and im going to do this all for my son! hes my drive!

Whats the chances he has celiac disease too?

Unfortunately the chances are pretty high. Remember there are a lot of us undiagnosed and passing on the genes. I have two children with very different genetic makeups, they both got genes from their fathers sides as well as mine.

There is no certainty that he will also be gluten intolerant but you should watch for some things like for example:

Be alert for behavior problems,

sleep troubles- too much or too little,

balance issues (ataxia)may show up as clumsyness at first,

many children in the early stages are consipated and will have severe growing pains.

Watch how he behaves after he eats, does he seem to get tired after or amped out?

Make sure his ped keeps up on his iron and vitamin levels and address any falling of his growth quickly.

And IMHO the most important thing if he shows signs of hyperactivity or of depression make sure you do the diet and not pills to start.

[GlutenWrangler]

I'm not sure exactly when babies can be tested, but make sure to do it ASAP. He may not exhibit any symptoms even if he does actually have celiac disease. Everyone is different, and babies are especially difficult because they can't tell you how they feel. The chances are very high that he has it. You may just want to avoid the problem all together and put him on the diet.

Also, the risk of many different cancers is increased for untreated celiacs. The risk generally returns to normal once we adhere to the diet (for life). Cancer generally developes over many years, so at 18, your risk is incredibly low. But to keep your risk low, you have to stay on the diet. It is tough to think about being so restricted for the rest of your life, especially when you are really young. I'm 22, and it definitely feels like a heavy burden sometimes. But the benefits always outweight the risks, so try to keep that in mind. Good luck with yourself and your son.

-Brian