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 Here..and Already Messing Up?

kkeg75

By kkeg75
in Coping with Celiac Disease

Recommended Posts

kkeg75 Newbie
kkeg75
Posted

Hello everyone. I've seen others post about orange juice, but I'm wondering if it's even possible it's causing my symptoms! I'll give some background first:

 

I've had dairy issues for over 10 years (sinus, migraines plus intolerant), but have been able to tolerate cheese well for the past few. I absolutely cannot have soy..severe joint pain and asthma attacks, even when the amount is so small it "doesn't have to be listed as an allergen". I asked the doctor to check for celiac a couple of years ago because of all this and they refused. I've also had chronic C this whole time, even with the lactose intolerance!!

 

After years of constant stomach pain, which I would have bet money was an ulcer, they did bloodwork and endo. After the endo the doc simply said, no cancer and you have gastritis. Months later at a check up my primary informs me that I came back positive for celiac! Grr...

 

Anyhow, I have a million symptoms, but upper stomach pain & in recent weeks bladder pain have been really bothering me. I've been gluten free since Friday, and over the weekend those symptoms were gone!! It was the first relief I've had in ages, until last night. I had a bottled orange juice from Tim Hortons. I paid no attention to the bottle assuming it was 100%. Within a half hour my stomach was bothering me. Then the bladder started. This morning I woke up with the horrible gnawing feeling in my stomach & my bladder feels awful. I triple checked my food log, and all was gluten free. Can this even be??? 

 

Sorry for the long post..I'm thankful to be here though, I've found a ton of info already! 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Orange juice is unlikely to contain gluten.  Maybe, a juice blend could have something  but it will be listed as an ingredient.  Orange/citrus is very acidic and can cause stomach pain.  It might have irritated your gastritis.

BlessedMommy Rising Star
BlessedMommy
Posted

Always check the label, but I doubt that the orange juice had gluten in it. Celiacs can have other foods bother them, especially as they are first healing.

 

Welcome to the board!

kkeg75 Newbie
kkeg75
Posted
  • Author

I didn't suspect it contained gluten..but wondered if it could cause the same symptoms. I'm back to miserable today :/

kareng Grand Master
kareng
Posted

You have gastritis - you need to eat for that for a week or two so your stomach can heal.

kkeg75 Newbie
kkeg75
Posted
  • Author

I was told to follow a low FODMAP diet for a month (this was 5 months ago), which I did, but it didn't help. I guess I'll start over. The bladder pain is more recent (2 months maybe).

heatman Rookie
heatman
Posted

Congratulations on beginning a more symptom free life! It has taken me a year to identify everything that was causing cross contamination. Luckily there's loads of information out there to help you get started. If you are just going gluten free I strongly advise you do a thorough kitchen cleaning (there are online guides) and pitch everything plastic or scratched. I feel like learning to live gluten free is like unpeeling an onion. Each layer makes us feel better but usually there's another layer of cross contamination to discover and deal with. Best of luck to you!

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

Celiac.com Sponsor (A8-M):


kkeg75 Newbie
kkeg75
Posted
  • Author

Thanks to all. I hadn't even thought about the kitchen! I have 3 insanely picky teenagers who eat tons of gluten (and leave breadcrumbs everywhere). I'm thinking I should have my children tested (especially the youngest who just isn't growing). It would be easier to get rid of all the gluten in the house, but boy would it be tough feeding them!!

mamaw Community Regular
mamaw
Posted

I agree with the other posters....Just another thought to consider have you had your gallbladder checked out? I know acidic foods caused me a lot of pain before my gallbladder was removed...And as your body heals you may find a lot more gluten-free foods or just non gluten food items that you notice is causing you an issue... ie: nightshades, soy, corn to name a few...as you recover you will become more in tune to what your body is telling you its likes & dislikes...these could be things that you never thought of to be a problem for you...

Sorry that the doctor didn't tell you when they first knew you had celiac....that is just wrong...

kkeg75 Newbie
kkeg75
Posted
  • Author

Funny you mention it. I do have an occasional but rare gallbladder attack, and the doctor was quick to mention removing it. Oddly though, it's not fatty foods that set it off! It took me years to figure out my soy & dairy issues, mostly because I was consuming them all the time. (Soy is in everything!!!). Maybe getting rid gluten will help me figure any others out. I have not yet tried eliminating corn or nightshades. It's tough for a foodie!!

nvsmom Community Regular
nvsmom
Posted

My guess is that you have not been gluten-free long enough for it to make any real difference yet.  It can take weeks to months (sometimes years) gluten-free before people are truly well.  You'll see improvements but recovery is often two steps forward and one step back, even if you are gluten-free.  Recovery is not linear - at some times it will be fast and great but other times it may stall out completely for a few days to months and leave you wondering if you ate gluten.  Hang in there.

 

Hope you continue to feel better.

kkeg75 Newbie
kkeg75
Posted
  • Author

I'm not even sure if it helps me at all, but I hadn't been eating a ton of gluten for a few years, since many things gluten also contain soy (commercial bread). I was enjoying pizza, flour tortillas & whole wheat pasta a few times a month. Ok..maybe several  ;)

cyclinglady Grand Master
cyclinglady
Posted

Welcome!

You might want to check out Newbie 101 section. Cross contamination is a very real problem. Here is the link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

nvsmom Community Regular
nvsmom
Posted

I'm not even sure if it helps me at all, but I hadn't been eating a ton of gluten for a few years, since many things gluten also contain soy (commercial bread). I was enjoying pizza, flour tortillas & whole wheat pasta a few times a month. Ok..maybe several  ;)

 

Eating gluten lite doesn't help a celiac.  I did not eat a bunch of gluten before either but a crumb a few times a month is more than enough to prevent us from achieving good health.  Stay strict and hang in there. ;)

kkeg75 Newbie
kkeg75
Posted
  • Author

Thanks. I didn't know I was a celiac at the time. I just found out last week. I only avoided it because of soy. So now I've been reading everything I can on it!

Pegleg84 Collaborator
Pegleg84
Posted

Welcome to the club!

Orange juice, if straight from a sealed bottle, is highly unlikely to have gluten or soy, but it can irritate your stomach because of the acidity. 6 years in I still have trouble drinking too much orange juice because of the acidity (I get gastritis on occassion and acidic things are no help).

Great to hear your feeling a difference on such a short time gluten-free (I was the same), but be aure to treat your stomach very gently for the first while. It's going to take some time to heal, but if you know what to do from the beginning, it will be much easier.

 

Good luck!

badcasper Explorer
badcasper
Posted

I used to think it was impossible to avoid soy until I went gluten free and that took care of a large percent of it. I haven't drank any juice since I went gluten free about 2 months ago because my stomach wasn't healed. Im not brave enough to try it again yet and I gave so much food including my juice to my kids. I also cannot have soy. It makes me bleed and bleed and bleed. 2 moths and im off the bc pills for bleeding disorder. I also suffered migrains and joint pain. Same thing with milk but now the only milk I can drink is bottled from a local farm. and some cheeses I can eat. Check your vitamins. The ones I was taking had soy in them.

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.