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Abnormal Labs-diagnosedli


eeskew7282

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eeskew7282 Rookie

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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    • plumbago
      @Joel K If the OP is ever in the hospital, and her celiac disease tests did come back positive and she does have celiac disease, she can just tell the doctors that she needs a gluten-free diet because she has celiac disease. They will listen to her, in all probability. And honestly, celiac disease is not taken very seriously inside hospitals, to say nothing of emergency departments, where in any case, the pt may not be able to verbalize anything, and the staff have to act right then.
    • Joel K
      It is illogical not to disclose a positive celiac disease finding to your doctor, particularly if you're 60 years old. Human beings generally begin failing in one form or another from 60 onward and you might find yourself as an in-patient in a hospital or at an emergency room. Drugs often have minute amounts of gluten and hospital and nursing home food certainly contains gluten.  Here's another scenario: Your doctor sends you for annual labs and your WBC count and others come back out of range.  I frankly think one should leave politics out of the equation when it comes to your health. (Insurance isn't about your health, by the way) Or go ahead and don't let your doctor know.  Only one person will have to deal with the results of that decision.
    • Rejoicephd
      Thanks @Beverage for checking in!  I haven't changed the dogs' food yet.  I'm still working through some of the other issues that I need to remedy (transitioning to an anti-inflammatory diet, being sure to get only gluten-free certified items, and buying some new cookware for my kitchen).  Somewhere after that, I have on my list to try out the dogs on a new dog food, but I haven't gotten there yet.  In the meantime, though, I can definitely see that some of my worst days seem to follow when there's a possibility of gluten cross-contamination (I'm still working to cut waaay down on these instances) OR when I eat anything with dairy/ milk protein in it.  So I think I need to really get a better handle on my day-to-day eating habits to reduce all gluten cross-contamination into my food and also any dairy intake, and then at that point, I think I'll start moving over to the dog food thing.  
    • Scott Adams
      Sounds like fun, and I was in Germany a few years ago so you might find these articles helpful:    
    • Scott Adams
      I just want to mention that we summarize the latest research on refractory celiac disease here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/
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