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Severe Abdominal Pain


dollamasgetceliac?

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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


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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.


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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.

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    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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