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For Celiac, Is The Abdominal Pain Right Above The Belly Button - Or Only In The Stomach?

SearchingForAnswers

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SearchingForAnswers Newbie
SearchingForAnswers
Posted

Just trying to determine - from what I was reading - the duodenum has no nerves so I shouldh't have pain there, but that is where mine seems to be.  Where is the pain typically located?

 

THANK YOU!

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cyclinglady Grand Master
cyclinglady
Posted

Pain could be all over your abdomen for Celiac Disease (celiac disease).  It's different for everyone.  For example, before I had my gallbladder out, my pain would present in my lower abdomen -- never in the upper right quadrant.  I had no stones just a non-functioning gallbladder that finally quit and became infected and that's when they finally diagnosed me properly (thanks to a HIDA scan!)  By the  way, gallbladder issues are related to celiac disease!  

I read that you have had several miscarriages.  I'm so sorry to hear that, but it is a sign of Celiac Disease.  Do the research and here's one government link:

 

Open Original Shared Link

 

See if your gastro or gyn can order a celiac complete blood panel test:  

 

Open Original Shared Link

 

It's important to get tested for a complete thyroid panel as this can also contribute to miscarriages (besides lots of other symptoms).

 

Find a doctor who will do these tests!  And you don't have to have diarrhea or constipation to have celiac disease.  My only symptoms were anemia and Hashimoto's Thyroidits caught by gastro who was going to give me a routine colonoscopy.  Who knew?  

 

Be sure to keep eating gluten to get accurate results!!!

 

Good luck!

nvsmom Community Regular
nvsmom
Posted

I used to get stomach pain - that above the belly button pain too. There was also bloating pain and spasm/cramp pains.... Lots of different pains to choose from  LOL ;)

 

What are your other symptoms?

SearchingForAnswers Newbie
SearchingForAnswers
Posted
  • Author

I used to get stomach pain - that above the belly button pain too. There was also bloating pain and spasm/cramp pains.... Lots of different pains to choose from  LOL ;)

 

What are your other symptoms?

 

*sigh*  I keep trying to convince myself I am not having this, because the diet change kind of depresses me.  but I can't escape the bloat, gassiness, stomach pain, etc.  It's almost like I think I have found the answer, but I don't want THIS answer. I don't want to face giving up foods that I like for the rest of my life.  But then, feeling good, it's hard to put a price on that.   So the pain in my abdomen, when it was at it's worse, was radiating to my back.  I know I have (or did at least) a kidney stone - but it was found last year so dont know much else about it.  I Do have brain fog, tiredness, and not sure if this is related, but have noticed that my fingers are itchy lately (which made me think maybe this is an allergy of sorts?) Then of course there is the fertility issue -but I AM in my early 40's so that could be a cause. I've had 3 miscarriages, in the past 4 years.  It could be my age, but everything they have tested shows my system is completely normal.  I was out of whack on my cycles, but there was no explanation for it - all my hormone levels and everything were normal.  it's just like my cycles were off (missed like 4 in a row) because the timing of things weren't firing correctly.  My body tried to ovulate when my period started - as odd as that sounds, the fertility doc was perplexed.  I went in on day 3 of my cycle, and he told my on ultrasound that my uterus was about to ovulate, we - not really argued - but debated it, as I said i just started my period.  He ran blood work and proved I wasn't ovulating, but my uterus thought I was.  Things were just firing out of whack - and once he forced them on the right order, I got pregnant - WHAM! first try.  but sadly, lost this one at 9.5 weeks (found out at 11 weeks the heart had stopped at 9.5 - we were devastated). 

 

I'm going to try again - probably one last time -but am afraid if this is the issue it may be a failed attempt again - I'm so afraid.  It's like there is a huge part of me that wants it to be this, because I finally have the answer, but then the other half of me wants so badly for it to be something else.  :(

AlwaysLearning Collaborator
AlwaysLearning
Posted

My pain in this area appears to have been caused by the B12 deficiency that came from malabsorption. It persisted after going gluten free, but has improved since getting my vitamin levels tested and supplementing. I'm two months pain free after six years of recurrent issues so I'm hoping this was the answer.

But if you do get tested for deficiencies and they exist, don't just treat them and move on because you fear having to give up wheat. Look for the cause of the deficiencies so that you don't end up with even more problems.

answerseeker Enthusiast
answerseeker
Posted

My pain was around my belly button and felt like stabbing/cramping pain. People have described it as little people with pitch forks inside your belly lol. That is actually how it feels.

I would also get a burning pain in my rib cage (sometimes very sharp) and around the top of my belly. It also would radiate to my back

And if course the loud gurgling

SearchingForAnswers Newbie
SearchingForAnswers
Posted
  • Author

My pain was around my belly button and felt like stabbing/cramping pain. People have described it as little people with pitch forks inside your belly lol. That is actually how it feels.

I would also get a burning pain in my rib cage (sometimes very sharp) and around the top of my belly. It also would radiate to my back

And if course the loud gurgling

 

I've had it 2 ways mostly - one is the one i described, the other is where i am hunched over and it feels like i was hit with a baseball bat.  that's the best description i have - it literally feels like I was hit hard in the gut.  I don't know - the more I read, research, the more I am convinced that this is taking me closer to the answer.  There are just too many things that reek of gluten.  That and or food allergy.  I really need tested.  I've also read that the gluten free diet isn't enough to heal the gut, that you have to go on the SCD diet to really heal it, which is far more restrictive.  I just want to get better so that I can carry a pregnancy - and I'm not even sure that this is my issue.  All very frustrating and depressing.

 

that said- I want to thank  all of you for your replies - I really do appreciate it

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answerseeker Enthusiast
answerseeker
Posted

Just get tested at least. You have nothing to lose there. And if symptoms improve on the diet you have your answer.

It's not that bad. The first couple weeks I had withdrawal and craved gluten like crazy! I was tired all the time too. I cheated once during that time. But now it's been over 2 months and I'm seeing some really positive changes. The biggest one has been my asthma and my energy level.

The good thing is you have this forum. When you feel defeated everyone here will support you and get you through it.

nvsmom Community Regular
nvsmom
Posted

Getting tested for celiac is a good idea. It's a genetically linked disease and could affect your offspring in the future.

SearchingForAnswers Newbie
SearchingForAnswers
Posted
  • Author

has it ever been so painful that you have considered pain meds?  just wondering.   Mine is not always like that but sometimes it is.. 

GFinDC Veteran
GFinDC
Posted

HI,SFA,

 

There is a  really wide range of symptoms to celiac disease damage.  Some people have no symptoms at all and are called "silent celiacs".  Others have digestive symptoms, gut paint, joint pain., skin rashes, nerve damage, insomnia etc, etc.  Determining celiac entirely by symptoms is difficult because of that wide range of symptoms.  However, recovery from symptoms after going on the gluten-free diet is a pretty clear indicator there is a gluten problem of some kind.

 

For me my gut pain was in the left side of the belly button and a little lower.  I also had general pain throughout my abdomen.  Have you read the Newbie 101 info thread?  It is a good start on understanding celiac disease.  One of the problems celiac causes is malabsorption of nutrients.  That by itself can lead to many symptoms and problems.

 

It is important to get tested for celiac disease before starting the gluten-free diet.  The antibody levels will start dropping after you go gluten-free and then the tests are not reliable.  The main testing is a simple blood draw for antibody testing, so not a big deal to get done.  Try to get the full celiac disease antibody panel, not just a few tests.

 

If you have celiac disease that would explain the fertility issues.   Dr, Peter Green's book on celiac disease a hidden epidemic has some good info in it.  If you do have celiac disease it will take a awhile to recover and get your antibody levels under control and start absorbing nutrients again.  Plus people's digestion i soften kind of unsettled for a while.  So holding off on another pregnancy is probably a good idea until things settle down.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

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