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

Help

Mish-Mash

Recommended Posts

Mish-Mash Newbie
Mish-Mash
Posted

Hi, I'm 19, and for about 6 years, I have been sick with a strep virus, knee op, umbelical hernia op, and for the past 3 years I have had terrible stomach pains, skin rash's, joint pain, memory loss and have done test for celiac disease about 2 years ago, but I was already on a gluten free diet, as the doctor told me that it would not change the results. soon after, I accidentally had a bit of gluten and got really sick. then about 6 months later, I went on a candida diet as my body was reacting to the smell and touch of gluten. Things got better after that, until I kept getting UTI's, but the doctors couldn't find any bacteria. Soon after, I was sent to a gastroenterologist and was diagnosed with mono, and suspected chrons, and she also wanted to redo the celiac testing, but after only 4 days, she told me to stop and did some more intestinal biopsies because I was reacting so strongly, and has put me on corticosteroids. And this year I've had renal colic six times, but they still can't find and kidney stones, but everytime they do a urine test, they find oxolate crystals. My specialst and GP are baffled because they think I have the symptoms for both celiac disease and kidney stones, but can't find any medical proof. Any help would be hugely appreciated, thanks.

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

Celiac.com Sponsor (A8-M):


RollingAlong Explorer
RollingAlong
Posted

Well, you've given the docs a good try. They've looked and they can't find any medical proof that gluten is an issue. So, if you went gluten free and that didn't help, they could try again and it wouldn't be anything but a temporary inconvenience for you.

If you go gluten free and it does help; that would be ok, but you won't have any medical proof. Only you can decide how important that is to you, relative to your current uncomfortable symptoms. None of the celiac tests are perfect; false negatives are not uncommon. If you go gluten free without medical proof, you will be joining a rather large group of people. My spouse had all the tests (multiple rounds of bloodwork) and the biopsy - it was all negative - and yet he feels so much better on the diet.

Archived

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

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


  • Member Statistics

    • Total Members
      131,653
    • Most Online (within 30 mins)
      7,748
    Janet51
    Newest Member
    Janet51
    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.