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. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    2. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    3. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    4. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    5. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,142
    • Most Online (within 30 mins)
      7,748
    Mark Conway
    Newest Member
    Mark Conway
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.