Get email alerts Get E-mail Alerts  

  • Articles  ||  Forum Home  ||  Gluten-Free Mall  ||  Store  ||  Journal of Gluten Sensitivity

  • Ads by Google:

    • Announcements

      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


    • Content count

    • Joined

    • Last visited

    Community Reputation

    0 Neutral

    About donwake

    • Rank
      New Community Member

    donwake's Activity

    1. donwake added a post in a topic Cmv Infection - Not Celiac   

      Thanks for the clarification: Celiac is auto-immune but not immune-compromising, good to know. I hate to spread misinformation by using the wrong terms.

      I have been following a gluten-free diet for a couple weeks now, and my "movements" and facial flushing have been better than they've been in years.

      I have no clue whether I definitely have a gluten allergy/intolerance, but I plan to stick with the diet because I feel better on it.

      I may have something else going on too, but the doctors haven't pin-pointed anything. I really sympathize with the doctors because diagnoses are so hard with multiple things going on.

      Plus I realized I am terrible at describing my symptoms. I had two different kinds of pain in my abdomen, neither of which were paricularly sharp, but I could describe them no better than "cramping" and "related to breathing" (both way too vague).
      • 0
    2. donwake added a post in a topic Cmv Infection - Not Celiac   

      Yes I agree Celiac would definitely count, although I should have been more explicit, the endoscopy and biopsy showed no evidence of Celiac for me. The doctors ran a bunch of blood panels for auto-immune diseases such as Celiac, but they're still straining their brains to figure out what, if anything, was the underlying cause of the CMV infection.

      I am simply counting myself very fortunate at my recovery. Believe it or not, I made it home literally just in time to see my 11-month-old daughter (our first) take some stabs at her first unsupported steps (inevitably followed by face-plant after face-plant into the mat, lol).
      • 0
    3. donwake added a post in a topic Cmv Infection - Not Celiac   

      Hi Gatita,

      Your experience sounds just like mine, I'm also in my 40s. The ER docs thought I had acute hepatitis for sure. I'm glad you recovered well.

      It's strangely comforting to hear about others with shared illness experiences. Thanks for your comments.

      Good luck to everyone trying to figure out!
      • 0
    4. donwake added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Cmv Infection - Not Celiac
      I wanted to thank everyone on this forum, everyone's posts were really helpful as I looked into possible Celiac diagnosis. I also referred my sister here because she has Celiac.

      Before I get into my own experience, I'd like to suggest that others who post on here while investigating possible Celiac, please follow up with your results even if it's not Celiac. I think that can be quite helpful for those of us looking for answers to their pain.

      So here's my story, perhaps not common, but it is cathartic for me to relate it, and I think it teaches something. I had three doctors visits, two ER visits, and two hospital stays.

      My symptoms were abdominal discomfort/cramping, diarrhea, extreme fatigue, and strong facial flushing accompanied by migraine-like headaches. I also had body aches, chills and sweats, especially at night. I lost about 25 pounds in the two weeks of the worst symptoms because I simply couldn't eat. I was nauseous without vomiting, and I never tested a fever above 100. My symtoms were especially bad about 20-30 minutes after eating.

      Although I had tested negative on the iga bloodtest, I still suspected Celiac because my sister had an iga deficiency that had also caused her to test negative prior to the endoscopy confirming her Celiac. So I was very eager for the doctors to follow through with Celiac testing.

      In the end, I am really glad the doctors went through all the testing they did. After chest x-rays, abdomen CT scan, ultrasound of my liver/pancreas/gallbladder, colonoscopy and upper endoscopy, MRI of brain, and about 25 vials of blood, the GI docs finally discovered in the small intestine biopsy a viral infection (CMV) had gotten to my small intestines and liver and kidneys. One lab result that really complicated the diagnosis was I had elevated liver enzyme levels.

      Apparently acute CMV infecton is pretty rare in patients unless they are immune-compromised with HIV or cancer, but it can happen. I was put on antivirals on an IV for a few days, and since my symptoms had started to go away, the infectious disease doctors let me go home and continue with oral meds.

      The list of suspected illnesses as I was tested ranged from pancreatitis to gallbladder disease to acute Hepatitis to various cancers to Celiac or other auto-immune diseases.Thankfully it turned out to be nothing chronic, although the doctors said my infection could have been life-threatening.

      The biggest lesson I learned was patience. I was convinced I had Celiac, as my sympotoms seemed to be intensified forms of what I had already been feeling for a few years. But there are a lot of possible conditions out there and it can be very involved trying to diagnose, especially if someone has more than one thing going on to complicate the symptoms.

      In fact, my doctor also thinks I have a gluten intolerance because the gluten-free diet has helped a lot with the diarrhea and facial flushing that I had been having for so long.

      I hope this helps someone. Thanks again for all the great information provided in this forum!
      • 9 replies

    Ads by Google: