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

New Diagnosis


MMrea

Recommended Posts

MMrea Newbie

New to this forum. I just found out I have Celiac. I am scared and confused. It was diagnosed through blood work. i have several more test coming up. What are the odds of it causing cancer? Also should I have my two children aged 6 and 2 tested? Thanks!


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



Celiac.com Sponsor (A8-M):



Lincoln Rookie

Hey MMrea,

I have also recently been diagnosed with coeliac disease, I'm not too sure about the cancer but can tell you that coeliac disease in nothing to be scared of. Also it is hereditary so having your children tested is probably a very good idea. Please try not to fear this as it is not worth fearing, also there is no need to be confused, the internet is full of excellent information about coeliac disease just do a few google searchs. The gluten free lifestyle isn't the easiest to adjust to but once you figure out the ins and outs of it it is quite simple.

Welcome to the world of gluten-free.

Lincoln

sandsurfgirl Collaborator

At first it is so overwhelming. I had panic attacks when I went to the grocery store the first few times. I will be gluten free one year in January and it is so easy now. It's a steep learning curve at first and you feel like you're skiing downhill at top speed but very soon it gets to be your new normal.

The best part is feeling well and not being sick.

Here's a few tips.

1. Eat clean at first. You have a lot of gut damage that needs to heal and your body can't do that unless you give it the best fuel possible. Lean meats, fresh fruits, fresh vegetables, plain rice. It's only for a short while and it will speed you on your way to health. You can pig out on gluten free cakes, gluten free donuts, gluten free mac and cheese, and gluten free pizza later when you are fully healed.

2. the tips of the villi are where you make lactase to digest dairy, so until that heals dairy may be out for a bit. I can eat it with no problem now after years of lactose intolerance.

3. Many also find they need to cut other things for awhile. I can't tolerate soy, except in small amounts like soy lecithin, but for awhile I had to cut dairy, soy, tapioca, xanthan gum and nightshades.

4. Use the search function on these forums and look at old threads. Look for withdrawals and newbies and things like that. Read read read read. You will learn FAR more on here from those of us who have been there done that than you will in any books you have to spend money on.

5. Find one pasta and one bread you like. My favorites are Tinkyada rice pasta and Gluten Free Pantry Basic White bread mix. That bread is also simple ingredients and I was able to tolerate it pretty early into the diet. It's super easy to make, not expensive and it tastes the most "normal" of any bread I've tried. You can actually make a regular sandwich out of it and it doesn't fall apart.

I also like Arrowhead Mills All Purpose baking mix for pancakes. I do one cup mix, one cup milk (or almond milk) and one egg. It already has the baking powder in it.

6. If your body acts weird don't freak out. You will have withdrawals and it will do strange things while you adjust. There was a period where every single thing I put in my mouth made me sick but it passed in about a week.

7. Start researching restaurants and find a few places ahead of time where you can eat out. Prepare now so that you aren't panicking when you are out somewhere and you need to eat.

8. Get used to taking food with you. Apples, bananas, nuts, oranges. Kettle Chips and Baked Kettle Chips are gluten free and travel great in the car. I love the baked ones a lot.

9. Honor your grieving process. At first you will feel deprived and you will go through many emotions. It passes and it's good to process it and come here to vent. We are here to listen if you need to rant.

10. Welcome to the best club you never wanted to join! It does get easier I promise!!!!

sandsurfgirl Collaborator

Oh and if you are just dying for something sweet, Betty Crocker makes great gluten free mixes. Yellow cake, chocolate chip cookies, devils' food cake and brownies.

Here is a peanut butter cookie recipe that is incredible.

1 cup sugar.

1 cup peanut butter. I use the natural kind.

1 tsp baking powder

1 egg.

Roll the cookies into balls. flatten with a fork. Bake at 350 for about 10 minutes.

MMrea Newbie

Thanks for making me feel so welcomed here. I have lots of test coming up but hope I am on the road to recovery. I really appreciate you taking time to help me understand all this. Everything taste like cardboard, I guess you just have to get adjusted! Thanks again for all the support!

cassP Contributor

Thanks for making me feel so welcomed here. I have lots of test coming up but hope I am on the road to recovery. I really appreciate you taking time to help me understand all this. Everything taste like cardboard, I guess you just have to get adjusted! Thanks again for all the support!

like said above, it really is best to eat very clean & natural, and try not to eat gluten free treats & carbs on a daily basis... they're usually not healthy, and can be hard to digest too... HOWEVER, we are human, and need treats- just try to keep them to a minimun- think of them as "treats" and not staples.

also, wanted to add, that i LOVE Pamela's Vanilla Cake mix, AND Pamela's Chocolate Cake mix YUMMMMMMM... ive made both with homemade buttercream icing, and they were better than the real gluten thing! but dont get her brownie mix- i thought it was awful

welcome, and release your worries... really- once you've been gluten free for a bit and heal... you're just as healthy as the next person-> probably MORE healthy- think of all the people out there that may have Celiac or something else- but they dont have any symptoms so they dont know to eat right.

ya, just be happy- getting off gluten will change your life and also probably prevent you from getting even more diseases that can be triggered by gluten

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748

    Mckshane
    Newest Member
    Mckshane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.