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

General Symptoms Question


zip2play

Recommended Posts

zip2play Apprentice

OK I have various symptoms and have been labeled IBS! I have extreme fatigue, I am constantly hungry, I have recently lost 5 pounds although eating more or normal. Some days my stomach causes me horrible doubled over pain. Others it rumbles and rolls and causes mild pain. Before I went on Zelnorm, I would have either be constipated or have diahrea. Now that I am on the meds, I typically have a BM daily.

Now for the gross part, I have had poop that strings out of my bottom and dangles to the water. It is like stretchy and disgusting! It doesn't happen always, but my stools vary in color, consistency and texture. My husband freaked when I described the stringyness and was like, THAT is not normal!

When I eat pancakes, I am in horrible pain. I seem to be able to eat high fiber bread and my stomach just rumbles.

If I have celiac disease wouldn't I be in MAJOR pain each and everytime I eat gluten? Or does it vary! Like now, I had bread with breakfast and my stomach is rolling away!

I am to see a GI on November 28th, I have no faith in Doctors anymore. I have more trouble with getting them to care enough to diagnose. I want to go in there with specific requests to get to the bottom of this. From what I am reading, I possibly may not have celiac disease but more of a gluten intolerance or wheat intolerance. How does a dr test to figure out which I may have?

Any help is greatly appreciated!

Monica


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



Celiac.com Sponsor (A8-M):



jrom987 Apprentice

Monica,

Being newly diagnosed, I do not have all the answers but I do know that symptoms change and there are hundreds of them! I have so many of them myself. I would ask for the blood tests but you have to make sure that you are consuming gluten for the tests to be accurate. Someone will post the ones they think you should have. I am not experienced enough to do that. :D

Good luck!

Jo Ann

zip2play Apprentice

Thanks Jo Ann! How are you doing? Are you now Gluten Free?

jenvan Collaborator

Monica--There is a long list of Celiac symptoms and they can each vary from person to person. Go here to see some symptoms: Open Original Shared Link

Go here to see how one gets tested: Open Original Shared Link

You definitely have some symptoms that could be Celiac related. IBS should be a diagnosis of elimination--meaning all other potential diseases and disorders have been ruled out. I was misdiagnosed with IBS for years! Getting the blood test is simple and would quickly help you figure out if Celiac is a possible diagnosis for you. Most any doctor can request the test.

darkangel Rookie

The message I've gotten from vets of this forum is yes, you can have a problem with gluten, be damaging your guts, and experience no symptoms or mild symptoms.

jrom987 Apprentice

Monica,

Thanks for asking how I feel! I have to knock on wood as I say this. Yesterday and today are the first days in a very long time that I have gotten out of bed without a raging backache and headache. I can actually stand up straight without holding my back and whimpering. I can't tell you how much I am hoping this is real and not a dream! Ha ha. This is the first sign of hope that I have seen so far!

Who needs pasta and bread that causes so many problems?

I just ordered a bread machine from Target. com and can't wait to get it! I already bought some bread mix so I am hoping it tastes better than the frozen breads we have to buy.

I have one more suggestion for you. Keep reading as much as you can on this site. The people here are so knowledgable and the information you gather could help when you see the doctor. I forgot to say that IBS is one of the diagnosises that I had gotten from my doctors too. I have heard and been thought to have any illnesses in the past 10-15 years. I think I have heard everything and until last month, celiac disease was not one of them. :D

Jo Ann

zip2play Apprentice

I just read the symptoms link, Feet issues. About 1 year ago, I thought I injured my left food. I have to be real particular on what shoes I wear now b/c the bottom of my left foot causes me problems! This could be celiac disease too?


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



Celiac.com Sponsor (A8-M):



jrom987 Apprentice
I just read the symptoms link, Feet issues.  About 1 year ago, I thought I injured my left food.  I have to be real particular on what shoes I wear now b/c the bottom of my left foot causes me problems!  This could be celiac disease too?

<{POST_SNAPBACK}>

I don't know for sure but it could be. My right foot has been swollen for over 4 years and no one knows why. I have seen every specialist my primary doctor could think of sending me to. I have had every test imaginable also. I stopped looking for a reason about 2 years ago and just deal with two different sized feet. I also have edema in the right leg. Maybe this is caused by celiac disease too? Guess it if goes away, I will have my answer. :D

nettiebeads Apprentice
OK I have various symptoms and have been labeled IBS!  I have extreme fatigue, I am constantly hungry, I have recently lost 5 pounds although eating more or normal.  Some days my stomach causes me horrible doubled over pain.  Others it rumbles and rolls and causes mild pain.  Before I went on Zelnorm, I would have either be constipated or have diahrea.  Now that I am on the meds, I typically have a BM daily. 

Now for the gross part, I have had poop that strings out of my bottom and dangles to the water.  It is like stretchy and disgusting!  It doesn't happen always, but my stools vary in color, consistency and texture.  My husband freaked when I described the stringyness and was like, THAT is not normal! 

When I eat pancakes, I am in horrible pain.  I seem to be able to eat high fiber bread and my stomach just rumbles. 

If I have celiac disease wouldn't I be in MAJOR pain each and everytime I eat gluten?  Or does it vary!  Like now, I had bread with breakfast and my stomach is rolling away! 

I am to see a GI on November 28th, I have no faith in Doctors anymore.  I have more trouble with getting them to care enough to diagnose.  I want to go in there with specific requests to get to the bottom of this.  From what I am reading, I possibly may not have celiac disease but more of a gluten intolerance or wheat intolerance.  How does a dr test to figure out which I may have? 

Any help is greatly appreciated!

Monica

<{POST_SNAPBACK}>

The fatigue and weight loss to me are very good signs of celiac disease. Also if your poop is really foul smelling it's gotta be celiac disease. The poop problems are from the malabsorption caused by celiac disease. I don't think IBS has the malabsorption issues that celiac disease does. Ask for the celiac disease blood panel from your dr. If he won't order it, ask him why. Or if you want, go gluten-free anyway for two weeks and see if the symptoms start to abate. Then if you eat gluten again, and start in with the problems, there you go - positive diet challenge and still a legitimate test for celiac disease. That's how my dr dx'd me 9 years ago. Also, you may be having problems with milk if you do have celiac disease - the damage done to the villi is also where lactase is formed to digest milk products. After you heal you should be able to tolerate milk and milk products better, if you are having trouble with them now

Guest DanceswithWolves

I'm still not 100% convinced that I don't have celiac disease.

I know I burp like crazy when I eat anything with Gluten in it.

I had some Halloween cupcakes that really brought up the burps!

Ughh!

Fatigue is always there too.

My joints crack and I feel so stiff all the time....sucks...

laurelfla Enthusiast

i have celiac disease... and prior to diagnosis my symptoms were kind of inconsistent. my most attention-grabbing symptom was the big D... and it was not everyday. so i actually thought i was getting better there for a little bit but then it would come back eventually. then my dr. ordered the blood test and my Ttg count was high -- 72. so yes, i think that's one of the most frustrating things about this disease -- variable symptoms, and such a wide range of them, too.

good luck!!! hope you feel better soon!

Rachel--24 Collaborator
If I have celiac disease wouldn't I be in MAJOR pain each and everytime I eat gluten?

<{POST_SNAPBACK}>

You can have celiac disease and feel perfectly fine after eating gluten. So...no you dont have to experience pain everytime you eat gluten and you could still have celiac disease.

Rachel--24 Collaborator
I'm still not 100% convinced that I don't have celiac disease.

I know I burp like crazy when I eat anything with Gluten in it.

I had some Halloween cupcakes that really brought up the burps!

Ughh!

Fatigue is always there too.

My joints crack and I feel so stiff all the time....sucks...

<{POST_SNAPBACK}>

Have you read Dangerous Grains? If your celiac tests come back negative again why dont you just seriously go on the diet? Its definately not going to hurt you and you obviously have problems with gluten. I dont have a celiac diagnosis but like my GI told me....whatever kind of gluten sensitivity I have...whether its Celiac or not...it was still harming me and I need to be gluten-free. I'm not going to put myself through a gluten challenge when I can just continue with the diet and getting better. Why start all over? If you dont have celiac it doesnt mean gluten isnt the cause or at least part of what could be wrong with you.

darkangel Rookie
I had some Halloween cupcakes that really brought up the burps!

Ughh!

<{POST_SNAPBACK}>

I'm proud to say I resisted the Halloween cupcakes at the office yesterday. It wasn't easy...

Archived

This topic is now archived and is closed to further replies.

  • 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 replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - 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)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

      Blood Test for Celiac wheat type matters?

  • 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):
  • Upcoming Events

  • Posts

    • trents
      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
      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
      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
      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
      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.