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

Severe Abdominal Pain


dollamasgetceliac?

Recommended Posts

dollamasgetceliac? Explorer

Hi I have been diagnosed with Crohn's and Celiac. the docs are not sure about the celiac because they say that perople with celiac do not have severe abdominal pain. I tested postive for the Ttg test, and they want to test me with a HLADQ test. my biopsy was normal and my Crohn's is in remission. the pain is unbearable. i have had several miscarrages, pain, chronic, fatigue. I feel better on a gluten free diet 2 weeks now, but the pain is not completely gone yet.

HELP :o


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



Celiac.com Sponsor (A8-M):



jennyj Collaborator

I have not been diagnosed with Crohns just celiac but I did and still do at times have severe abdominal pain. After going gluten free it took me a long while not to have pain all the time. It did get better though as time went on. Good luck.

Ursa Major Collaborator

Your doctor is wrong in saying that you don't get severe abdominal pain with celiac disease. I sure did, and it took over a month of being gluten-free for it to finally go away.

I found that a homeopathic remedy called sepia helped a lot with the pain.

Kaycee Collaborator

I also have had severe abdominal pain, and I have been diagnosed coeliac. The pain wasn't all the time, but maybe one or twice a month, as in severe cramping. Being gluten free has more or less eliminated it.

Good luch, and I hope your pain goes.

Cathy

nora-n Rookie

My daughter had pain every day for many years and it went away almost instantly when trying gluten-free and it has not returned. She got an official diagnosis afterwards.

She said that when they took the bopsies, she felt the doctor taking the biopsy just where she used to have the pain, and that is the very beginning of the duodenum. I think it is called the ampulla. It is located to the right just after the stomach.

Others may have pain other places.

I have read about this pain on several forums and many have had this pain from celiac.

The doctor is plain wrong.

nora

ravenwoodglass Mentor
Hi I have been diagnosed with Crohn's and Celiac. the docs are not sure about the celiac because they say that perople with celiac do not have severe abdominal pain. I tested postive for the Ttg test, and they want to test me with a HLADQ test. my biopsy was normal and my Crohn's is in remission. the pain is unbearable. i have had several miscarrages, pain, chronic, fatigue. I feel better on a gluten free diet 2 weeks now, but the pain is not completely gone yet.

HELP :o

Your doctor is so wrong about the pain issue. My pain was so overwhelming that words could not describe my last 5 years before I was diagnosed. In the early stages though the 'no pain' did fit, in fact it was one of the worst things about the first 10 years I spent with daily D, yea you read that right 10 years. The D would hit with no warning and because I had severe nerve damage it was very hard to make it to a bathroom in time.

If you want to do a gene panel I would have Enterolab do it, otherwise if you have any genes other than the US recognized 2 genes you will be told you can't have celiac because you don't have the genes. There have recently been 7 more genes recognized that lead to celiac, but US GIs haven't for the most part heard of them.

It will take you a while to heal, please do continue with the diet for a bit, it is the best diagnostic we have. There is a lot to learn about being gluten-free as it involves more than just what you eat. If you have also not removed dairy from your diet it would be a good idea to do so as it will help you heal faster. You can challenge dairy in a couple of months when you are symptom free to see if it is tolerated.

Do be sure to check all scripts with the makers, generics you will need to check each time they are filled. Also check all supplements and vitamins, there are no labeling regs with those so be sure to read ingredients, you may find that some marked gluten-free have wheat or barley grass, which is not okay.

SchnauzerMom Rookie

Abdominal pain is another one of the symptoms that I get when I eat gluten. That's how I know I have messed up. Gluten free clears it up. I still get a little twinge now and then but I think that's the healing process.


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



Celiac.com Sponsor (A8-M):



dollamasgetceliac? Explorer

:huh: if my Ttg was 14 I am positive for celiac right? :huh: they want to do an HLADQ test but i am finding out that that is even not accurate enough to predict celiac disease. They did an Endoscopy 6 months ago but no one is answering my question: did you take a biaopsy? I am getting sent from one doc to the other , I have more doctors than ever before, see previously posted : several miscarages worst of all SEVERE ABDOMINAL PAIN now on the Gluten free diet it is less but not gone , scarry symptoms like chaest pain , numbness in half my face, they said I have peripheral Neuropathy, but they want to pin the IBS on me which pays better ( more meds to be perscribed, AHA ) I know the Crohn's is an added factor. I like DR. Peter Greens book but I find it difficult to see which diagnosis is acurate? His book Celiac Disesse a hidden Epidemic. I find myself turning back and forth between chapters.

What is the most accurate test 4 celiac?

PS: What is easier a gluten free kitchen or that i should put my food seperately? I live with 4 other people who do not mind gluten-free diet, ( most of the time) there are many food allergies too.

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. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

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

      Patiently Waiting to See Results

    4. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,265
    • Most Online (within 30 mins)
      7,748

    Midwesteaglesfan
    Newest Member
    Midwesteaglesfan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.