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

TombRaiderShan

Recommended Posts

TombRaiderShan Newbie
TombRaiderShan
Posted

Hi everyone,

I am new to all of this. My story actually begins with my mom. For years she had digestive problems, but everything was going severely downhill early last year. She finally had her gall bladder out, but still wasn't well. Finally, she had the blood test, then the endoscopy which determined she had flat villi. She also dropped down from 150 lbs to 121 lbs in just a few months. When she told me all of this, I was thinking that my digestive woes could be due to celiac disease.

I went to my doctor and wanted a full panel done including a celiac test. Well, he flat out told me that there was no way I could have celiac disease (since I am overweight), but he was happy to diagnose my IBS. I wanted the blood test, but he wouldn't give it to me, he told me that even if it was positive, no hospital in the area does the endoscopy. I would have to drive 2-3 hours to have it done. He told me that I should just go on the gluten-free diet and see if I feel better. Why are doctors so uneducated about celiac disease? He even questioned my mom's diagnosis since she wasn't diagnosed as a child!

Anyway, my situation is this: I was very bloated and gassy, with D and constipation, painful abdomen, depression. I decided to go on low carb and of course gluten-free. I feel so much better on low carb than on low fat, plus I need to lose weight. All of the above symptoms went away for the most part, but I am still having a big problem with edema. I have pitting edema in my shin area and ankles. This concerns me, because low carb has a diuretic effect normally. I am also taking ditropan due to urinary issues. I am trying to cut back on salt, but everything I eat is salty, since I don't eat anything sweet. I decided to order some dandelion root to see if it helps.

Is anyone else doing gluten-free low carb? It's nice to find a forum to visit.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Welcome to the board!

You may be interested in this article....as well as your doctor.

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Wow! What an interesting article, thank you! I had no idea that so many celiacs are overweight at diagnosis. I found it interesting how the article stated that doctors will refuse to test overweight patients, since that is what happened to me. I could have just gone on feeling horrible and continued to decline healthwise.

happygirl Collaborator
happygirl
Posted

I'm glad it was helpful.

I'm not sure where you live, but an endoscopy is a pretty "basic" procedure in the realm of medicine. May be worth it to call your local hospitals and ask if they perform routine endoscopies.

May be worth it to look for a doctor that will perform the blood test for you, as well.

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Hi again, happygirl, I live in the middle of Nebraska. I was a bit skeptical as well when he made that claim, since there is a good size hospital only 20 miles away. I don't think it would be prudent to get a blood test now because I have been eating gluten-free for about 2 months, so I would probably get a negative. If the blood test is negative, no doc is going to ok the endoscopy.

I should have pressed the issue when I was symptomatic, but it would have cost a lot (even with insurance), and in the end, I would do what I am doing now. In my mind I have celiac disease, like my mom. Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

mushroom Proficient
mushroom
Posted

There are hundreds of us self-diagnosed celiacs running around here because no one would test us. It is so sad to think it is still happening. So much unnecessary suffering has gone on, brings tears to my eyes. "When will they ever learn?..When will they EeeeVER learn! But I'm glad you blew 'im off and did the thing you knew was right.

happygirl Collaborator
happygirl
Posted
Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

This is wonderful!

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

Celiac.com Sponsor (A8-M):


DakotaRN Newbie
DakotaRN
Posted

Welcome, I am glad that you are feeling better. I know what it is like to live so far from medical help. I live in rural N.D. Just take it one day at a time. You will find lots of great support her.

Jestgar Rising Star
Jestgar
Posted
gluten-free has changed my life.

That's the bottom line for most of us. I'm glad it's making a difference for you.

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Thank you, everyone for your kind words. :D @mushroom: That makes me feel better regarding the fact that many folks are self-diagnosed, because a part of me felt like I might get chastised here for not seeking out a doc to test me. I appreciate how supportive everyone is!!

Chrissyb Enthusiast
Chrissyb
Posted

I was also overweight when I started eating gluten free with in the first 6 months I lost 40lbs. That was a big plus for me not to mention I was starting to feel better. That was a year ago. I have since had to remove dairy from my diet also and may be more to come once I start doing a food diary since I am still have some problems. It could be that I have a mixed kitchen and I am getting some cross contamination. For the most part though it has been all good.

angieInCA Apprentice
angieInCA
Posted

I'm a gainer. I was 50 lbs overweight at diagnosis. First Dr. told me I couldn't have celiac disease because I was overweight. New GI told me after looking at all my symptoms that he was 99% sure I had celiac disease but I had already stared eating gluten lite and had a very weak positive. I tested positive for DH so I opted not to have the endoscopy, didn't see the need for the time or expense.

I'm 48, was misdiagnosed for 47 years. Gluten free for 7 months and feel better than I ever have in my life.

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. 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.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

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

      Great Value Veggies cannot be trusted.

      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
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      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...
    5. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,445
    • Most Online (within 30 mins)
      7,748
    JamesM
    Newest Member
    JamesM
    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

    • 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
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.