Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Diagnosed

AlexandraM

Recommended Posts

AlexandraM Newbie
AlexandraM
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Piccolo Apprentice
Piccolo
Posted

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 :D

AlexandraM Newbie
AlexandraM
Posted
  • Author

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 Contributor
glutenfreeinminnesota
Posted

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 Apprentice
Brooklyn528
Posted

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 Mentor
GottaSki
Posted

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 Newbie
AlexandraM
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.