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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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    • Ginger38
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      By Ginger38 · Posted

      Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise.  I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 
    • knitty kitty
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      By knitty kitty · Posted

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    • Alibu
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      By Alibu · Posted

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      That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon. But there is the option of going for the gluten challenge in a more robust way and getting retested.
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