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

99.999% Sure I Have Celiac

WesternMA12

Recommended Posts

WesternMA12 Newbie
WesternMA12
Posted

Hello everyone, a friend of mine recently sent me an article/video about Celiac disease because she believed I had it. All my life I have been someone who just as "an overly sensitive stomach." When I was younger we used to joke that I'd thrown up in every restaurant in my hometown because when I was younger I used to vomit a lot, mostly after going out to eat. I have always just thought that I just had a sensitive stomach, and that was that.

However, it appears as if symptoms of those with celiac describe me to a perfect T.

-Upset stomach nearly every time I eat and sometimes nausea (regularly)

-Diarrhea everyday, constipation on few days i don't have diarhea

-bloating, gas

-rash on my wrists/elbows

-I was anemic when I was younger and I fluctuate now. I could not give blood the other day.

-Often feeling weak and dizzy

-fatigue even though I sleep about 9 hours a night

Any help here? I am away at school and cannot go to the doctor for another week, but I am becoming very nervous. Thank you!!!!

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

That could definitely be celiac. Don't be nervous. If you're celiac, you change your diet around and the lifetime of stomach problems disappears in a few months! Figuring out I was celiac changed my life. I had a "nervous" stomach, IBS, gastritis, and would spend days curled up with a heating pad. That's all gone. My stomach is "cast iron" now as long as I don't eat gluten. It's really nice to have a normal digestive system.

Good luck at the doctor, and do try the diet once you've had the testing done. There are a lot of false negatives and people with gluten intolerance that doesn't show on the tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like you belong here. If the rash you speak if is blistery, very itchy and leaves long lasting purplish scars you may have DH. You could see a knowledgeable dermatologist and tell them you suspect DH, the skin form of celiac, and request a biopsy for it. Just make sure that they biopsy the skin next to your lesions not the rash itself. It also wouldn't be a bad idea to ask for a celiac blood panel. Do be aware there are false negatives with testing so a strict trial of the diet is needed no matter what the results.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

The DH rash can come and go. It depends on the person. I was covered with it as a child but by my teens it went down a bit but then flared again in adulthood.

Don't be nervous about asking your doctor for testing. They should IMHO be testing everyone in the country like they do in some European countries. You doctor really should have already offered to test you. Your doctor works for you don't let him or her intimidate you.

You also have the option of just going gluten free, very strictly, and seeing if it helps. You don't need a doctors permission to go on the gluten-free diet. That said if you do go gluten free and decide later you want to be tested you would have to challenge gluten by eating it daily for up to three months and you still might get a false negative on the tests.

Skylark Collaborator
Skylark
Posted

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

The diet does not require a prescription or even a doctor's agreement. B)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

All the more reason to bite the bullet and get the testing done.

shopgirl Contributor
shopgirl
Posted

Wouldn't you rather know so you can start getting healthy? The anxiety you feel could be part of the Celiac itself. Anxiety was a huge symptom for me. It's not always easy being gluten-free but it's better then being sick all the time. Get tested so you can move on. You'll always get plenty of help here. :)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

ravenwoodglass Mentor
ravenwoodglass
Posted

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

Not all celiacs are underweight. Some are quite overweight, some are close to average and some are under. I think the mucous is your system trying to protect itself from the gluten. You should mention it to your doctor along with everything else. Make sure that if your tummy wakes you in pain at night that you tell the doctor. That lets them know that you don't just have IBS because IBS doesn't do that.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

Yea I couldn't figure that out either since I was the heaviest I ever was the last few years before diagnosis and my D was basically constant 24/7. I am naturally a slender person and went back down to my normal weight fairly quickly after diagnosis.

shopgirl Contributor
shopgirl
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

chasbari Apprentice
chasbari
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

shopgirl Contributor
shopgirl
Posted

Very much my experience as well. Nobody thought I was ill because I looked "healthy" (ie: overweight!)

Me, too. That's why I was so elated to find that information. The weight fell off when I went gluten-free but the theory certainly makes sense. If I didn't know when I'd be able to get food again, I'd start hoarding it too. I was kind of pleased with my body's (misguided) resourcefulness.

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. 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...
    2. 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...
    3. 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.
    4. 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...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,137
    • Most Online (within 30 mins)
      7,748
    GFTom
    Newest Member
    GFTom
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • 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.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.