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Severe Abdominal Pain

dollamasgetceliac?

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dollamasgetceliac? Explorer
dollamasgetceliac?
Posted

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

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jennyj Collaborator
jennyj
Posted

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
Ursa Major
Posted

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
Kaycee
Posted

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
nora-n
Posted

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
ravenwoodglass
Posted
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
SchnauzerMom
Posted

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.

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dollamasgetceliac? Explorer
dollamasgetceliac?
Posted
  • Author

: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.

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      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
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