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

Very New Member


Patty55

Recommended Posts

Patty55 Rookie

Hello to everyone from whom I have learned so much in the past few days and thank you! Since going to Mexico 2 1/2 months ago I have been sick and sicker, finally hospitalized. CT of pelvis showed a lot of inflammations from pylorus to jejunum and I was given a probable diagnosis of Crohn's. Went home feeling weak on a low fiber diet. Started going online to different sites and forums. Spent a week with the Crohn's group (who REALLY have it bad) and did not feel this was the same. Then saw a 2nd Primary who has more on the ball & said why didn't they test for Celiac's or GB? So I just had the panel drawn & spent a day reading posts from people who have been driven to near insanity with the same strange symptoms I had. Since I had felt better on the low fiber diet but didn't realize I was avoiding wheat, it hit me after thinking it was ok to eat a sandwich with multigrained bread! All the weakness, malaise and pains were back again! I am so greatful to have read how much time it might or might not take to feel better! I don't care if the panel comes back negative now. I only know how immediately (well, within 12 hrs) I felt like my old self. I am hoping to schedule an endoscopy & colonoscopy with biopsies anyway, and will be trying to get a better fix on a gluten-free lifestyle. Thanks again! --Patty


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



Celiac.com Sponsor (A8-M):



Guest nini

welcome to the board, ask any question that may come up, no question is too silly or stupid, as we've all been there!

jenvan Collaborator

Patty-

Welcome ! We are glad you're here. Please let us know when you get the final diagnosis. Also--if you have Crohn's (you can have both Crohn's and Celiac too), you should definitely read up on the SCD-Specific Carbohydrate diet. If its something you want to pursue at some point, there are quite a few here on the diet. It is a diet that restricts gluten in addition to most carbs--carbs that take the body longer to break down, thereby encouraging bacterial growth and balance upset in the gut. Below are some links to sites that explain the diet: Open Original Shared Link, Open Original Shared Link, Open Original Shared Link I like posting the amazon site for the book b/c there are about 160 reviews you can read--most of them all 4 stars and people who have experienced great improvement, healing or remission from Crohn's, Colitis, IBD...and Celiacs who have had improvement that made too slow of progress or incomplete recovery on the gluten free diet alone. If you have Celiac, the time for improvement really varies person to person--some feel better immediately, others it takes some months. Either way, the gluten free diet is totally doable...and if you have any questions or issues, you can ask away here.

jaten Enthusiast

Welcome! Sounds like whether you have Celiac or not, you're certainly gluten-intolerant. Whatever your tests reveal, welcome to this board and to the gluten-free life.

evie Rookie

[ :rolleyes:

Welcome to a very helpful board!! I have been here less than a month but have learned so much that has made my bad days easier!! do not be too surprised if your biopsy does not show celiac but many of us are getting better on the gluten free diet. this is a very caring and helpful group, scott included. My blood tests showed a gluten problem 3 months ago and improvement has been slow for me. My dr. diagnosed me as "presumed celiac" until I go on gluten again and have another biopsy. Not sure i want to do that???

you came to the RIGHT place.. Again welcome newcomer!! evie :)

tarnalberry Community Regular

welcome to the board!

mouse Enthusiast

Welcome to the board. I was gluten-free for over a year when I finally joined. I learned more here then the 300 plus hours of research that I had done prior to joining. This is a very helpful forum and ask away with any questions.


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



Celiac.com Sponsor (A8-M):



Patty55 Rookie

Thank you so much the welcomes and I WILL be asking questions. Fortunately, you've answered some already before I thought of them! I went out and bought my first loaf of brown rice bread (as a life without sandwiches sounds messy) and pasta today. I feel like I have a new pet!

A little disappointed to learn that a biopsy, too, can be inconclusive for celiac, but I can figure no other reason to be having a pretty calm stomach, NO headaches or weakness in just two days. Can you tell me if a blood test for gluten is different from a celiac panel? Thanks also for the SDC diet and the Amazon sites! I can't believe anyone wouldn't need a book but have cut and pasted many recipes and shopping advice from this site already. :rolleyes:

Thanks again everyone!

Patty

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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,864
    • Most Online (within 30 mins)
      7,748

    Jojo3
    Newest Member
    Jojo3
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.