Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Be Gluten Free?

candacelynn

Recommended Posts

candacelynn Newbie
candacelynn
Posted

Hello everyone, I will try and make this quick but it's a long story. In January of '09 I was hospitalized for a gallbladder surgery which was supposed to fix the gastro distress I was having. I couldn't even get out of bed except to go to the bathroom. Anyway they did the surgery and things continued to get worse. I was putting out 7 liters of fluid a day. The local doctors thought it was celiac but I tested negative and they had me on a gluten free diet. They sent me to Froedtert Hospital in Milwaukee where they diagnosed me with total villi atrophy. They also told me I had celiac from the slides they viewed from the other hospital from my ugd. However they repeated the ugd to confirm 2 weeks later after being on the gluten free diet with no change. They said it was not celiac that it was Nongranulomatous Chronic Idiopathic Enterocolitis and that there was more damage than there had been before so they took me off the gluten free diet. To make a long story short I've been on prednisone, 6mp, and remicade for the last 1 1/2 years. It's caused more harm than good to the rest of my body but my small intestine has started to heal but I still couldn't get rid of the steroids. So the GI and I decided I should go gluten free again just to see what happens. So I did and I have been able to get down from 60mg of steroids to 7mg and I am still tapering. However I have been retested for celiac in Milwaukee and I only had one of the lower genetic markers. Though some of my family members have celiac. I guess my question is do I stay gluten free for the rest of my life, or is this just a mental thing. The evidence seems there to me. But it's not something I want to do if I don't have to. I don't wish this on anyone. Any advice on whether it sounds like I should be gluten free?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


scarlett77 Apprentice
scarlett77
Posted

My question would be do you FEEL better on a gluten free diet? It may be that with all the rest of the stuff that gluten just may be harsh on your digestive system, not necessarily Celiac. I think at this point gluten may do you more harm than good. Personally, if you feel better gluten-free than do it.

While I agree a gluten free diet is a PITA, I think there are far more worse things. With all the gluten free items out now it's actually not that bad. Good luck and I hope you feel better!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,656
    • Most Online (within 30 mins)
      7,748
    Sandy Bromberg
    Newest Member
    Sandy Bromberg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      Medication

      By knitty kitty · Posted

      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.