Just Diagnosed

[AlexandraM]

Hey fellow celiacs,

I am a 24 yr old female and I just found out that I have celiac disease and I'm excited to get started to becoming healthier. I have thought something was wrong for a few years, I've been fatigued, the condition of my teeth began declining, in the last 3 months I've been having awful pain in my stomach, diarehha, gas, bloating, (my stomach is so loud, rumbling loud enough for people around me to hear it!) and HIVES! I thought it was my liver and my doctor and I have done numerous tests, which pointed us to celiac. Now I am embarking on the jounery that begins upon diagnosis and I was hoping people had words of encouragement and tips that help make the transition into gluten free living easier (especially with the holidays drawing near).

I have so many questions like, is it genetic? Will it make it harder to get pregnant? Am I more at risk for other illness and disease? What is it like to be pregnant with celiac? Is it more difficult to lose/gain weight for people who have celiac disease? Will I ever get used to the adjustment? How are people who have celiac treated in restaurants and at dinner parties? Clearly I have more research to do but I thought maybe this would kick start it! Thanks for the read,

Alexandra

[Piccolo]

Alexandra,

Welcome to the board. Let me start by saying it gets easier as time goes on. I can answer several of your questions.

Yes, it can be genetic. It is recommended that all first degree relatives get tested ie mom, dad, siblings etc. As long as you stick to the gluten free diet you should be able to get pregnant.

The weight depends, some start gaining as the gut heals and absorbs more food. Some loose because the body has been in starvation mode and hangs on to anything it can. I have stayed the same.

Restaurants are always a challenge. I recently went to one that had a gluten free menu and were versed in gluten free. I still got glutened. Eating at a friend's or a covered dish event can be a challenge also. There is always a chance for cross contamination. You are safe to take your food and food to share. Take yours first to avoid cc.

Remember read labels. Also don't try Rice Dream. It is processed with a barley enzyme and causes problems.

Others will chime in with their expert advice also.

Welcome!

Susan

[AlexandraM]

Thanks, Susan. It's nice to be welcomed! Today is my first 100% gluten free attempt, so far, so good. I'm off to the gluten-free bakery in town and looking forward to the experience.

Alexandra

[glutenfreeinminnesota]

Hey! I am 25 and just found out I have celiac through an endoscopy. I had problems with anemia and always feeling tired for years!! They blamed my fatigue on the anemia, and the anemia on just being a girl! I started having all kinds of digestive problems in the last three years, and FINALLY know what is wrong with me!! Doesn't it feel great to know you can finally do something about this?? It is not as hard as I thought. It's been emotionally hard for me, I didn't realize how attached to food I was! But there are SO many options out there and everyone here has been so helpful. I have been gluten free since November 8th, accidently glutened myself last sunday and felt worse then I ever did before!! Tells me my body is already trying to heal and does not like that stuff. So don't try to cheat!! It will get easier, and know you can always vent here, or get GREAT recipes here. Good luck!!

[Brooklyn528]

Hello girls! I am also 24 and I was diagnosed in January of this year. First off, some food suggestions. Kinnikinnick breads, rolls, and muffins are great and can be ordered online. After you order, they bake to your request and mail same day. Always put it straight into the freezer. The Betty Crocker mixes are great. Trix cereal is gluten free. Honey nut chex are really good. Walmart and Kroger now have packaging that says gluten free. Kroger has a list of the things that aren't marked with gluten free on their website. If it doesn't say wheat in the contents, check the list. If it's not on the list, call because some things are gluten-free but are not on the list or marked. Ore-Ida fries(all of them) are marked gluten-free. Skittles and Butterfingers are gluten free. Debole's pasta is sold in chain supermarkets and is pretty good. You have to cook it specifically to the directions, and get your own collander for draining pasta before you eat pasta at home again. They are like Cross Contamination petri dishes. Well, I just wanted to let you know some of the things that I wish I would have known when I got diagnosed. If you cook, I have some really yummy gluten-free recipes for dinner foods that you would never know that it's gluten-free. If you would like them, send me a private message. Good luck and have fun with it. It's a great chance to try new things.

Brooklyn

[GottaSki]

Good Morning Alexandra-

Welcome! Thought I'd comment on your great list of ?s.

I have so many questions like, is it genetic? Yes, but all that carry Celiac Genes do not develop Celiac.

Will it make it harder to get pregnant? Maybe, I believe I've been undiagnosed celiac for most if not all of my 44 years. It was not difficult for me to become pregnant. My "morning sickness" was very severe with each baby - led me to eat very little the first four months - I craved mostly fruits, vegies and protein - in hind site I was eating very little gluten...the last 5 months of each pregnancy I felt the healthiest I ever did - may have been the lack of gluten!

Am I more at risk for other illness and disease? Here is great news - because you are young the odds are very good that you by eating gluten-free you will completely heal! When first diagnosed my doc and dietician both claimed that even at my age my body could heal to nearly non-celiac.

What is it like to be pregnant with celiac? oops, already answered

Is it more difficult to lose/gain weight for people who have celiac disease? For me, my body had been hording for years...I've consistently gained unexplained weight during all that time -- docs would always dismiss this symptom when I spoke of it - yet I am nine months gluten-free and am losing weight consistently without trying! I'm down at least 15 pounds so far.

Will I ever get used to the adjustment? Yes! Yes! Yes! Our family was just talking about this last night -- I'd say the first month is biggest adjustment - I was nearly in tears during one grocery mission because I was so sick of reading labels. That passed quickly. Months 2-4 went from it being a chore to shop and cook gluten free to it feeling natural.

How are people who have celiac treated in restaurants and at dinner parties? It helps if you state your condition in the simplest way and then elaborate if someone is interested and asks questions. I do find restaurants scary places - we do our best to order safely and hope for the best. We don't eat out as much as we used to - we always cooked the majority of our meals so adding a few more wasn't difficult. Dinner parties...I usually eat before we go, eat what is safe there and bring a sinful chocolate cake or brownies for everyone to enjoy -- this has been the most fun because I don't tell them it's gluten-free until someone says "hey is this gluten-free?"

I do carry my own dressing to both peoples homes and restaurants and a package of rice crackers - sometimes more, but that is more for my 16 year old in case there is nothing for him to eat at the party.

Good Luck -- sounds like you are off to a great start!

-Lisa

[AlexandraM]

Thank you to everyone who responded with such positive feedback!

With your help my family is amazed that I'm taking this in stride and with "such a positive attitude." They keep wondering if I'm going to start cheating, but I'm already feeling a difference and some of my digestive problems are less apparent. I can't believe I'm sharing this but (for the first time in soooooo long) I had my first almost normal BM today and I called my husband at work to celebrate!

People have been really helpful and accepting of my celiac, we have gone to a dinner party and it felt odd to bring my own food but no one thought much of it, people wanted to try my gluten free foods when I was full and said it was really good (being polite to the celiac? doesn't really matter the reason, though). I now have my own personal stash of gluten-free products in my purse/house and I it doesn't seem a big deal to pull out my Glutino pretzels at the movie theater and munch away and I'm feeling so good it doesn't matter if others are put out by it, really! (Not that that has been the case, everyone is so understanding!)

I'm looking forward to starting our family with my husband soon and will likely need more support when the time comes. In the mean time, I am so honored to have online buddies who have helped me start the transition into the new, healthier me! In my future I see totally repaired small intestines and really good poops! Thanks again everyone for the support, I can't even imagine what the first few weeks would have been like had I felt isolated with this disease!

Alexandra