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'm Not Sure If This Is The Answer Or Not

ruthie

Recommended Posts

ruthie Newbie
ruthie
Posted

I just found this site today. I'm relieved to hear that other people have similar digestive problems and survive them somehow! I'm 24, and my digestive problems began when I was 21, a couple of monthes after I was hospitalised for severe depression and put on medication. I've since been diagnosed with bi-polar II disorder and am on mood stabalisers. That problem is pretty much taken care of, but my digestive symptoms have just gotten worse. I developed an intolerance to dairy, had frequent diarea, have stomach cramps gas and bloating and recently sharp pain on the right side of my stomach. And recently my eyes have been super itchy. Constant fatigue and mental fog definately.

I worked with a dietician for a year, she said I was suffering from malabsorbtion and thought if we eliminated dairy and a couple of other things (soy, red meat) I would stop having all the digestive problems but I never did. She thought about eliminating wheat but I was very much against the idea, thinking it was one of my last "comfort foods". I never knew before browsing this site that lactose and gluten intolerance often go hand in hand.

I am seeing a gastoentorologist in July, which is way too long to wait in my opinion, but I live in Canada where there is a shortage of any kind of specialist. It will be free but in the mean time I am trying to cope. I'm seeing my general physician tomorrow. I have been working towards going on a low-glycemic index diet (www.gidiet.com for anyone who wants a peek) which is low in grains anyways, and can be done gluten free. I'm seriously considering going gluten-free to see what would happen. My only worries are the increased cost of groceries and the increased time and planning that would go into food prep. I'm on a student budget, living with my fiance who's also a student, it's really a bad time for such a big change but I'm starting to feel so crappy with all these symptoms that it might just be worth it. Any thoughts or suggestions would be welcome

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

My suggestion to you is to not go gluten free until after you see the specialist in July. I know it is a long way to wait, but you could mess up your test results by going gluten free before the tests,even if it is only for a short time. I spent two years fighting for a biopsy, once I knew that gluten was most likely my problem, and I finally gave up and went gluten free, only to have the doctor agree to a biopsy two weeks later. Now during my lifetime I had been gluten free for a few time periods of about two weeks to two months, while trying different weight loss diets, and according to a book called "Dangerous Grains" by James Braly and Ron Hoggan, it can sometimes take as long as 5 years for the damage to return in the intestine enought to diagnose Celiac Disease after a person has been on a gluten free diet. So rather than take chances with the testing, not to mention a few months of higher food costs, you would be wise to wait. If you end up getting terribly ill before July, then you could probably just check into a hospital and get the tests done then. Hopefully it will not get to that point.

By the way, I did go back on gluten for two months, and my biopsy still came back negative. I had testing done by Enterolab that says I do carry the gene and I am producing antibodies consistent with gluten intolerance, so I do know that is my problem. And I feel much better gluten free...

God bless,

Mariann :)

mommida Enthusiast
mommida
Posted

I went gluten free about 2 1/2 weeks before the biopsy, asked the doctor if that would mess the test up. He said "no this test is so precise that nothing could mess it up" Got the results back - negative. Took one bit of a caramel candy-guess what? I think the test was WRONG!

Is there any testing that can be done on a gluten free diet?

gf4life Enthusiast
gf4life
Posted
I went gluten free about 2 1/2 weeks before the biopsy, asked the doctor if that would mess the test up. He said "no this test is so precise that nothing could mess it up"

Your doctor was wrong. The lining of the intestine can heal in as little as three days! So 2 1/2 weeks could certainly cause a false negative. The only tests out there that can show if you have Celiac Disease while on a gluten-free diet that I know of is the tests offered from Open Original Shared Link . And even then it usually can only tell from the stool sample for up to a few months. You could ask Dr. Fine (head of Finer Health and Enterolab) if you should still get the stool test or just get the gene test. The gene test cannot tell you if you have an active case of the disease, but can tell you f you carry the gene(s) that cause it. It is recommended that you still go gluten free if you have the gene to avoid getting the disease later, but if you have symptoms that improve on a gluten free diet, you are most likely gluten intolerant.

I suggest you check into the tests at Enterolab, or ask your doctor for a gene test. If your doctor is like mine they won't believe the Enterolab tests. I do, and I told my doctor I didn't do the tests for her, I did them for me and my own piece of mind! :)

God bless,

Mariann

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. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Barilla gluten free pasta

      Has anyone had a reaction to gluten free pasta ? I made ground beef pasta and gluten free sauce and I'm having every symptom there is. Nausea , constipated, burning pins and needles, anxiety...etc lots of pain 😞 headache 😭 Does this sound familiar? I'm literally bed ridden.
    2. Scott Adams
      0

      Fluffy Blueberry Buckwheat Pancakes That Are Naturally Gluten-Free

    3. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Reverse Osmosis (RO) Water

      Thank you for your reply. I read the same thing about distilled water. Oddly, drinking that has not caused any sort of reaction in my gut. Nothing I can hear and feel anyway. 🤣 With that said, I have also switched over to spring water for drinking. My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled sp...
    4. Rejoicephd
      - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    5. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,446
    • Most Online (within 30 mins)
      7,748
    DH Larry
    Newest Member
    DH Larry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Colleen H
      Barilla gluten free pasta

      By Colleen H · Posted

      Has anyone had a reaction to gluten free pasta ?  I made ground beef pasta and gluten free sauce and I'm having every symptom there is.  Nausea ,  constipated,   burning pins and needles, anxiety...etc   lots of pain 😞 headache 😭  Does this sound familiar?   I'm literally bed ridden.  
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      Thank you for your reply.  I read the same thing about distilled water.  Oddly, drinking that has not caused any sort of reaction in my gut.  Nothing I can hear and feel anyway.  🤣  With that said, I have also switched over to spring water for drinking.  My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled spring, distilled, or RO water.  The manual gallon refills of RO water have an attractive price of $0.49 per gallon, provided you use your own container.  Knowing it causes major bubble gut (and likely other issues) for me, I am avoiding all RO water moving forward.  In fact, I will gladly drink tap before RO water. Here is what Google says when searching "European study regarding reverse osmosis water". --Begin quote: European studies indicate that while reverse osmosis (RO) is highly effective at removing contaminants, it strips essential minerals (calcium, magnesium) and creates low-mineral, slightly acidic water.  Research suggests this may have long-term health implications, such as mineral deficiencies, while also negatively affecting the sensory quality (taste) of water. Key Findings from European Research & Reviews: Health Concerns: Epidemiological studies in Europe have associated low-mineral water consumption with increased risks of cardiovascular disease, cognitive decline, and reduced intake of essential nutrients. Mineral Depletion: RO systems can remove up to 95%+ of solutes, including minerals that are vital for health. Sensory and Quality Impact: Studies show that reducing the mineral content (TDS) of water makes it taste bitter or flat, with optimal, "fresh" taste found in water with a TDS between 190 and 350 mg/L, suggesting post-RO remineralization is necessary for better quality. Regulatory & Safety Context: While not banned, European regulations under the Drinking Water Directive emphasize the importance of mineral content, and countries like Germany often favor alternative treatment technologies that retain minerals. Industrial Application: In Europe, RO is widely accepted for industrial applications (e.g., food, beverage, pharma) due to its high purity output, but it poses challenges like membrane biofouling. Environmental Impact: RO is recognized to use more energy and waste more water (up to 15% more) compared to conventional treatment methods, raising environmental concerns in some municipalities.  Recommendations: Due to the loss of minerals, many experts recommend remineralizing RO water before drinking to improve taste and nutritional value.  --End Quote
    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
×
×
  • 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.