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

I Swear I Have Celiac Disease...but....


ktnhsv

Recommended Posts

Jestgar Rising Star
I would stay on the diet for at least a month and eat only whole unprocessed foods during this time. Make sure you are also staying away from dairy during this time.

I agree. Eating healthy can only be doing you good, whatever your issues are, so try to make this a permanent change, as much as you can.


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



Celiac.com Sponsor (A8-M):



  • Replies 59
  • Created
  • Last Reply
ktnhsv Newbie

I definitely want to keep eating healthy!!!! It feels fantastic, loads more energy.

Why should I stay away from dairy?

Jestgar Rising Star

Many people have difficulty digesting lactose before their villi have healed. You may or may not, but it's easier to cut out the milk for a few months. Some people use lactaid tablets if stopping dairy is too much of a challenge (but still cut back as much as possible).

jadeblue Newbie

awesome job ktnhsv!

i'm going to start gluten free, today i threw out most of my gluten. i feel so lucky to have found this website today!

keep up the great work, i'm hoping i'm as successful as you at staying away from the gluten :)

  • 3 weeks later...
ktnhsv Newbie

Well I failed miserably. :( And I feel terrible again. :(

ravenwoodglass Mentor

Well I failed miserably. :( And I feel terrible again. :(

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

ktnhsv Newbie

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(

The hopeless feeling could very well be related to the gluten slip up. Gluten can and does effect many of us mentally. We can also go through withdrawl which can cause us to be irritable, weepy etc. Don't lose hope, get back on the gluten free diet and give it a good chance to help. Healing doesn't happen overnight.

Ahorsesoul Enthusiast

ktnhsv,

You will be glutened now and then. Does not matter in the long run. Eliminate what glutened you and move on. This is a all or nothing world. We do the best we can. I have not met one person who went gluten free in an hour, day or week.

It takes a long time to figure out what is in your house that will gluten you. You will finally get to where you feel better. It's well worth the effort.

Now kick your self and figure out what glutened you. If you cheated, do not do that again because you know what will happen. If you couldn't resist the special Holiday treat, learn how to make it gluten free. There is nothing that can not be made gluten free.

Hard? Yes. Get over it, it's not impossible. You can do this.

You can be in control of your life.

BigDogz Explorer

Well I failed miserably. :( And I feel terrible again. :(

If everyone on this site was honest, I'd bet 99% of us "failed miserably" at least a few times in the beginning. I know I let my cravings get the better of me 5 or 6 times before I finally learned my lesson! And what a lesson it was, too!!

I can't even remember now what it was that I'd eaten, but I sure remember the results! The first symptom hit while I was driving to work - a sudden dull headache that was quickly followed by a complete loss of the left half of my vision. I, somehow, made it safely the last 2 or 3 miles to work but by the time I made it inside the headache had escalated to an excruciating level and my left eye watered uncontrollably. It's really hard to explain in a way that doesn't make me sound like a nutcase, but I had a strange feeling that a huge electrical charge was building in my body and would discharge in a massive, violent jolt at any minute.

My supervisor was concerned and drove me to the ER. If I wasn't already a little scared, I sure was when the admitting nurse rushed me right back and told the next nurse that she was making me a "priority 1 stroke protocol". I had no idea exactly what that meant but I can tell you the word 'stroke' terrified me!

The horrendous abdominal cramps and watery diarrhea hit a short time after arriving in the ER. In the next 2 hours, I had 11 episodes of diarrhea and felt exhausted and dizzy despite the IV fluids I was being given. I wasn't sure if I should be glad I had a sympathetic doctor or worried something really bad was going on when he walked into my room to check on me while awaiting test results and announced, "God! You look horrible!"

Some time later, and after multiple tests, the doc came back and reported that my CAT scan and bloodwork were fine and that he felt I was having a "gluten-induced migraine with amaurosis fugax - a specific type of visual aura". I was told to avoid gluten (like I really wanted it after all of that!), given prescription pain meds and instructed to follow up with my own doc ASAP. The headache, feeling of being off-balanced and the visual disturbance lessened but didn't go away completely for 3 DAYS!

Interestingly, I described the feelings of an impending electrical jolt that I had experienced that day to a friend of mine and he told me that he gets a similar feeling just before he has a grand mal seizure! I've read that some people do experience gluten-induced seizures and I'm absolutely certain that I was perilously close to having one that day. I know the whole, awful experience has convinced me that no temptation is EVER worth feeling like that again!

The last thing I want to tell you is this...the longer you are gluten-free, the less difficult it seems. The cravings DO go away, especially if you attack them in little baby steps. I was a carbohydrate and Mt. Dew junkie. I knew that the caffeine and sugar were just as bad for me as the gluten, but I cut the gluten first. Once I had a handle on that, the Mt. Dew was traded for a non-caffeinated grape soda. Once I no longer missed the caffeine, I slowly eliminated the grape sodas. The key is not to try doing it all at once and don't make the changes so severe that you feel deprived. Yes, I eliminated the sugary sodas but that doesn't mean that I can't still have an occasional bowl of ice cream, serving of pudding, Reese's peanut butter cup or make a batch of gluten-free brownies. If you try to do everything at once you're going to feel overwhelmed and you're more likely to give in to temptation. The most shocking thing you will find is that, once you commit to gluten-free and start healing, food tastes SO much better!!!!

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. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,920
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.