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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.