I recently got tested for celiac disease but I am not sure what the results mean. Anyone have an idea my doctor was a bit unclear.
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Hello @jmatias88, Welcome to Connect. I have no medical training or background but can relate to being unclear about what the lab test results mean if the doctor doesn't specifically interpret them for me. Just a glance at the test values shows that they are both well below the reference range of less than or equal to 14.9 U/ml which to me shows that the tests were negative for what they were looking for. Here's more information on the Celiac Disease Antibody Tests – https://labtestsonline.org/tests/celiac-disease-antibody-tests
If it were me and I was unclear what the lab test results were, I would pick up the phone and call the doctor or send them a message on a patient portal if your health system uses them. Are you able to share more about your symptoms or why your doctor ordered the test?
If a Celiac test shows positive for Celiac, you most likely have it. An autoimmune disease that starts in your small intestine and destroys the lining leaving unable to digest food. It than effects all body parts because you are not getting nourishment. Most doctors are ignorant because they are not trained in the disease. It causes problems with the function of your gastrointestinal system, constipation, diarrhea, bloating, cramps, pancreas, gall bladder, stomach, gerd and a foggy brain. I have arteriosclerosis, had a shunt in thigh, osteoporosis, even after 40 years of weightlifting, peripheral neuropathy and all kinds of digestive problems. Find a Dr who knows it, even if you have to travel. I went to 6 gastroenterologists who only did colonoscopies and said I was all right. I have been suffering to the point of disability for 10 years. Finally another doctor said let’s have a blood test for Celiac. I also have the gene. It is genetic. You have to go to a gluten free diet. There is no meds for it. I am one of 30% who still has the symptoms. It is a painful, and dysfunctional disease. The doctors cannot see it in the colon. The hard constipation has caused a very painful anal fissure and I cannot get an appointment with a colorectal doctor. I am being tortured inside.
It looks to me as if you do not have celiac (double check with your doctor, ask directly!) , but you can still have a sensitivity/intolerance to gluten.
People with celiac react to microscopic exposures to gluten. Cross-contamination is an issue. People who are sensitive/intolerant need to avoid gluten but in my experience don't have to be careful to the extent that people with celiac do.
My daughter has celiac. She has her own set of pans etc. I am gluten-sensitive and just wash mine!
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Interesting. I have celiac disease. Diagnosed at 21. Now 67. Have osteoporosis , osteoarthritis,and lots of gastrointestinal issues (IBS-C, gerd), high cholesterol , borderline diabetes and I'm thin.(Also a severe dry eye problem for forty years). On a strict gluten free diet . Usually when you have celiac disease you end up with another autoimmune condition.
@pwgrimes sounds like you have really been thru the wringer! Did the gluten free diet not help you at all? Have you gone to a university hospital or a large medical center?
I have been trying to see a colorectal Dr. for the anal pain like a knife in me. It has been 7 weeks since the referral. They keep telling me they will put it on top of his pile. I am in constant pain and cannot take opioids. I have to stay laying down, if I stand up the searing pain and rectal cramping have left me disabled. I have to take 4 stool softeners a day or it is hard and if I can get it out makes the pain so much worse. I think it is an anal fissure, since the pain comes from a very specific area. I went to my doctor Monday and told her I can’t stand the pain and the CR doctor had not called. She knows him and got him on the phone. They called and now a wait for 3 weeks for the appointment. I am trying lidocaine and cortisone cream. It doesn’t help much. I have thought about coming to the Mayo Clinic, but it will take 3 days driving the RV. If I get no help here I have that on my list. I was doing better with the celiac balancing the constipation and diarrhea, then in December the rectal pain really worsened. I am so dry inside no matter how much I drink. So my constipation is very hard to get out. I just want to be able to have some normal days.
I forgot your question. I have been GF since almost 3 years. Some symptoms are better, but my digestion is not right. Food can go through me in 30 minutes, mostly undigested. To keep the pressure on my rectum down I am not eating much. I have lost 7 lbs. I am one of the 30% that GF is not a success. I am 74 and know I have had active Celiac my whole life.
Go to the ER. At least someone can see you and take a look.
I am considering that. But what I need is the fairly simple surgery. We only have the one Colorectal Dr. Up here in Redding. I have sent 2 messages to the Celiac Clinic in Chico in the last month, but they have not contacted me back. I am disgusted with the health care system, that has too many uncaring doctors. I have spent years doing volunteer work in hospitals and was married to an administrator. So I am trying to get by with the pain. I keep looking to the next day, week, month and years for help.
Maybe protocols have changed. Thought the small biopsy was the gold standard for diagnosing celiac disease. Done via gastroscope and biopsy of the villi (finger-like projections of small bowel). That's how I got my diagnosis.
Absolutely. But it is not always done. You are right: blood tests are used too often for a final diagnosis.
I would add that @sue225's post is especially important for someone with a negative blood test.
My daughter has lived with assumed celiac for years now. She went gluten free before any diagnostic tests. She has to be back on gluten for 6 months for diagnosis. GI docs have tried twice to get her back on gluten, believe it or not, and she gets so sick with the first exposure that they call it off. So she will never be diagnosed. She initially felt she needed the diagnosis for full commitment to being as careful as needed with celiac, but that didn't last long. She is very very careful.
If you have not been off gluten, I would make every effort to get fully tested and that would include the biopsy as @sue225 wrote.
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