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

Is This What Is Wrong With Me?

belledujour

Recommended Posts

belledujour Newbie
belledujour
Posted

Okay I'm really lost and need some help and guidance. I have not been diagnosed with Celiacs. I'm going to try to get this as short as possible. I started suffering deliberating abdominal pain attacks in 2006. I would have severe cramping, gas, bloating, diarrhea, fatigue, and basically felt like I was dying. I've been to many GI doctors and many other doctors in different areas. So I had a colonoscopy like 5 years ago and my doctor said he was almost 100% sure I had Celiacs because of how my intestines looked and made a comment about Celiac Spru? So I went out and bought book on Celiacs and books about going gluten free. After my test results came back I tested negative for Celiacs so I never really thought about it again. Over the years I've tried to go gluten free twice and the first time I wasn't committed and obviously felt no different because I was only eating gluten free once a day. Then two years ago I tried to go gluten free again and had more success but then I had a bad pain attack and was convinced that gluten wasn't the issue.

 

I've been tested a few times for Celiacs and it always comes back negative but I never could get the doctor saying my intestines looked like I had been affected with Celiacs.

 

 

Basically in a nut shell I always feel sick. My stomach is always upset, cramping, giving me diarrhea, or constipation. My body always aches. It seems like almost everything I eat makes me sick. I plan my food schedule around everything because I'm so scared I'll get sick. I have eczema. But every once in a while I'll feel fine. I'm bloated to the point where I look 3-4 months pregnant and I'm always getting asked. They'll tell me " Your small everywhere else then you have this big head belly.

 

I wish I never what was wrong with me.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome Belle!

 

When you have been tested for Celiac Disease -- had you been regularly consuming gluten for at least six weeks?  

 

Did they draw complete Celiac antibody tests?

 

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

Total Serum IgA

 

Have you had any nutrient testing?

 

Hang in there :)

mushroom Proficient
mushroom
Posted

Adding to Lisa's questions, when he did the colonoscopy, did he also do the endoscopy (down your throat into the small intestine) and is that what he said looked like you had celiac but then the biopsy came back negative?  Or did just the blood tests come back negaative?

 

Welcome to the board, and you will get used to all our nosey questions :)

blueshades Newbie
blueshades
Posted

Okay I'm really lost and need some help and guidance. I have not been diagnosed with Celiacs. I'm going to try to get this as short as possible. I started suffering deliberating abdominal pain attacks in 2006. I would have severe cramping, gas, bloating, diarrhea, fatigue, and basically felt like I was dying. I've been to many GI doctors and many other doctors in different areas. So I had a colonoscopy like 5 years ago and my doctor said he was almost 100% sure I had Celiacs because of how my intestines looked and made a comment about Celiac Spru? So I went out and bought book on Celiacs and books about going gluten free. After my test results came back I tested negative for Celiacs so I never really thought about it again. Over the years I've tried to go gluten free twice and the first time I wasn't committed and obviously felt no different because I was only eating gluten free once a day. Then two years ago I tried to go gluten free again and had more success but then I had a bad pain attack and was convinced that gluten wasn't the issue.

 

I've been tested a few times for Celiacs and it always comes back negative but I never could get the doctor saying my intestines looked like I had been affected with Celiacs.

 

 

Basically in a nut shell I always feel sick. My stomach is always upset, cramping, giving me diarrhea, or constipation. My body always aches. It seems like almost everything I eat makes me sick. I plan my food schedule around everything because I'm so scared I'll get sick. I have eczema. But every once in a while I'll feel fine. I'm bloated to the point where I look 3-4 months pregnant and I'm always getting asked. They'll tell me " Your small everywhere else then you have this big head belly.

 

I wish I never what was wrong with me.

 

It does sound like some kind of allergy. Mine slowly built up. I had pain occasionally and then it would become more frequent to the point where i woke up with severe stomach pains every morning. My blood test came negative for Celiac and i had a colonoscopy which only showed mild lactose intolerance. My doctor sent me off to get a food allergy blood test. And it came out that i had an allergy to wheat. I had eaten wheat all my life pretty much everyday. When i finally stopped eating wheat, almost within 1-2 days i stopped waking up with intense pains in the morning. And the longer i was off it, the more i felt better the next day. I still have trouble avoiding it. Sometimes i eat it and i feel fine afterwards but the next day i will feel awful and be sick for up to 2 weeks.

I'm still very new to this so i still think avoiding wheat hasn't solved my illness completely but i can function ok now. It's very easy to accidently eat the wrong thing because everything is so processed these days. try your best to avoid it for up to 2 weeks and see how you go. Don't buy anything. Make it all yourself. I was lazy about it at first until i was so tired of feeling sick that i took it seriously. If you notice you are feeling well when you avoid it then that's probably it. If you have a sudden pain attack then it could be you slipped up somewhere. It happens to me too so i'm trying hard as well :) Goodluck!

1desperateladysaved Proficient
1desperateladysaved
Posted

Greetings Belledujour,

 

If the doctor really saw celiac signs in the intestine, it seems likely to me that you have it.  Usually the damage is seen by looking in a microscope.  If he saw the damage without it, it would be extensive, if I have it right.

 

When I got diagnosed, I looked 5 months pregnant.  I knew I did, the MD said I did. I like having babies, but I sure don't want to be mistaken for pregnant when I am not.  

 

I hope celiac will be the answer you have been looking for.  One that can help you improve your health..  I hope you will become 100% into the diet.  I hope then that your cramping and bloating stuff will become a thing of the past.  You've stepped out on our road, now keep walking and let us know how it is going.

 

Diana

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748
    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.