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 Am Having A Weird New Symptom..


Guest micah

Recommended Posts

Guest micah

5 days ago, after being gluten free (as far as I know) since 6/19/07, and having seen some improvement in symptoms, right below my belly button it feels like I can feel something moving inside. I know that sounds really really weird and I promise I'm not crazy, but could it be a spasm for 5 days? It doesn't move from the same spot. Please tell me I don't have some tapeworm or something cause that's what I'm starting to think! Has anyone had this - am I missing a vitamin or something?

Micah


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



Celiac.com Sponsor (A8-M):



Yellow Rose Explorer
5 days ago, after being gluten free (as far as I know) since 6/19/07, and having seen some improvement in symptoms, right below my belly button it feels like I can feel something moving inside. I know that sounds really really weird and I promise I'm not crazy, but could it be a spasm for 5 days? It doesn't move from the same spot. Please tell me I don't have some tapeworm or something cause that's what I'm starting to think! Has anyone had this - am I missing a vitamin or something?

Micah

When I first started I felt butterflies right below my belly button for about 2 or 3 weeks. Now it's only once in a while. Nausea is also common it will pass as well. I read every post and am still at it (up to page 79 at this time) and found every new or odd symptom that I was experiencing was felt by someone else. It helped to know I wasn't nuts.

Yellow Rose

mftnchn Explorer

I also had some mild spasms in my abdomen the first couple weeks of gluten-free. It wasn't in just one spot, but it was kind of the "butterfly" feeling too. It felt like my intestines were starting to work or something. I have the big "C" rather than "D" so just thought it was a good sign of improvement.

NoGluGirl Contributor

Dear Micah,

I have had that, too! When I get glutened, I get that after the other horrible stuff. I get violently ill, so I have to be very paranoid careful about it. I know something that should really be useful. I have a little present for you to welcome you to the forum!

I have a list that should really help. This is overwhelming. I went through this with myself eight months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

Guest micah

Thanks so much!! I do feel better knowing others have had this symptom. My problem has been C also, so perhaps I've never had working intestines!

Thanks for the list of safe foods, that'll really come in handy.

Micah

trents Grand Master

It might be something totally unrelated to celiac disease, like an umbilical hernia developing.

Steve

NoGluGirl Contributor

Dear Micah,

You are very welcome for the list! I want to simplify this for anyone I can! It can be exhausting doing this. Make sure you are not getting cross-contaminated, either. Do not use utensils, cookware, or anything that has been used for gluten in the past. Soaps, shampoos, toothpaste, mouthwash, and many other things could hurt you. Watch out for all of those. When in doubt, do not use it until you call the manufacturer.

As far as your intestines go, you are probably right. You probably never did have working intestines. I spit up every formula as an infant, and had to be placed on 2 percent milk. I think a lot of people probably were born with it, but they only find out they are Celiac later on in life. People really did not know anything about it until more recently.

Sincerely,

NoGluGirl


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Micah, what happened to me with the big "C" after going gluten-free was first the symptoms you are having, then at about 10 days, had daily bms for the next 10 days, Since then it hasn't been consistent but that was my first sense that gluten-free might be going to help.

Archived

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

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

      Recovery from gluten challenge

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

      Recovery from gluten challenge

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    4. - trents replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

    5. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,281
    • Most Online (within 30 mins)
      7,748

    newlife213
    Newest Member
    newlife213
    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

    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    • cristiana
      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
×
×
  • 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.