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
Patty55
Posted

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
Guest nini
Posted

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
jenvan
Posted

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
jaten
Posted

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
evie
Posted

[ :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
tarnalberry
Posted

welcome to the board!

mouse Enthusiast
mouse
Posted

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
Patty55
Posted
  • Author

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.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,869
    • Most Online (within 30 mins)
      7,748
    Stacy W
    Newest Member
    Stacy W
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up now for support) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals as set out in this book was so helpful in lessening my anxiety.  Llardi suggests that we will struggle if we don't have enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help you to feel better. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.