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Abnormal Labs-diagnosedli

eeskew7282

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eeskew7282 Rookie
eeskew7282
Posted

I recently was diagnosed with Celiac disease. I wanted to tell my story because the information needs to get out there. Celiac disease is underdiagnosed. I believe I have had it about 20 years.

I first had IBS symtoms around the age of 20 years old. I am now 41 years old. I developed Hasimoto's thyroiditis,Hypopthyroidism around the age of 20. Possible diagnosis of Rheumatoid Arthritis at age 36. I know anytime you have an autoimmune disease, others are sure to follow. I see a rheumy at the Cleveland Clinic since I was 36 years old. I now wonder if the arthritic pain is related to the Celiac Disease because my RA labs are normal. I do have mild anemia and a low Ferritin level (iron store level). This year in April after researching RA, I reviewed some info about gluten free diet help with RA, so I started the gluten free diet. Once I began this diet, I noticed my IBS got so much better, the diet was tough but I stuck with it until I had my last appt in early june at the cleveland clinic. My MD asked if the gluten free diet was helping my arthritis and I told him no. He then said it may not be helpful. I then stopped the diet and ate so so many wheat products. I didn't notify my IBS symptoms until maybe a week later, once it started it got so bad (never have had so many problem with it before) I had severe bloating, stomach pain, nausea. My stomach was so tight. I even went to my GYN and had an abdominal ultrasound and I asked if he would do the Celiac panel and he agreed. I don't think he would have ordered it if I would not have asked. My labs came back. My EMA was positive and my antigen IGA was 19, which is high. I showed the info to a gastrointerologist and he agreed it was Celiac disease. Before I saw the GI MD, I started the Gluten Free diet and after 3 days I felt so much better. The GI is going to do an endoscopy most likely next week. He did not tell me to restart the gluten for the endoscopy but I have read so much info that I should be on gluten for the test. Does anyone know about this .I have also read that the is a major increase in Gastric Lymphoma with you have Celiac disease and are not compliant.

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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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