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

Could It Be Something Else . . . ?


KLTerry

Recommended Posts

KLTerry Apprentice

I started having noticible stomach problems back in January of 2004. I'm not sure if they just occurred out of nowhere. I had been pregnant for two years (my kids are 2 1/2 and 17 months), so there were obviously changes in my body that I just blamed on pregnancy. Anyway, back in January '04, I talked to my PCP about stomach cramping. I couldn't really pinpoint it to any specific location, but it felt like all over. He told me to drink more water because I was constiputed. I told him that I had been constipated since 2002 and that no amount of water or any of the meds he prescribed me were doing anything. I then went to see a specialist who did bloodwork and scopes and ultrasound and scans, and most every test is normal (which I'm not complaining about). The celiac disease bloodwork was negative/normal/inconclusive, so I had a genetics test done, which came back inconclusive as well, so all tests were sent to a specialist, who said that he thinks I have celiac disease (I know I've told this story before). And this brings us back to my doctor's appointment at my new GI, where ALL of my tests came back normal. Now, I have been struggling with being gluten-free, and I've got to be honest, I'm not having much success, so I don't think that "trying" to be gluten-free would have produced normal blood results. So, my question is, if I don't have celiac disease, what the heck do I have? Are there any other diseases that are mistaken for celiac disease?


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Which tests for celiac were inconclusive before? What exactly did they test you for with celiac? Were you on a gluten-free diet when the new tests came back normal from the other doctor? If you were attempting a gluten free diet leading up to that then it is possible it can screw up the test results. Is this new GI knowledgeable about celiac? The other one you had that thinks it was had to have a reason for thinking that and if he deals with celiac alot I wouldn't cross celiac off just like that especially since you had inconclusive results. Blood tests can be negative but you still could have celiac. That's why I asked which tests you were tested for becasue some are more accurate then others and only some labs do certain tests. The symptoms I have heard you talk about are ones that come with celiac. Have you been tested for other intolerances or allergies to other foods. Maybe you have a gluten intolerance if you don't have celiac. I would look into those things as well. Have you done an Enterolab? That might give you some insight as well. Good luck :D

-And celiac can be triggered by pregnancy,childbirth,stress, etc

Also you may want to check out about Candida.Other then being a celiac for a while I found out not to long ago I have candida and I am on Nystatin. Candida can cause some similar symptoms.

As far as it being hard to be gluten free....when I was told if I don't follow the diet I would probably end up with cancer at a young age that made me determined to follow the diet. I'm not about to compromise my life for a piece of pizza. It tears your intestines up and puts you at risk for so many serious and life threatening complications.

Just like if you had a serious allergy to peanuts you would stay away from them because you could die right. Well isn't a celiac and eating gluten the same concept? No, with celiac it won't kill you right away but the concept is the same and it still is serious.

KLTerry Apprentice

Most of my tests were negative, and I was only attempting a gluten-free diet when the blood tests all came back negative. In the summer, Two of three came back negative and one was inconclusive (not sure which one). An endoscopy revealed a hyatal hernia, colonoscopy revealed nothing but fissures and hemrhoids. The scan they did (not sure the name of scan, but was a big machine that came down over my stomach and i had to stay still for an hour) came back as normal, the ultrasound came back as normal, all of my regular bloodwork (i.e. glucose, thyroid, etc.) was normal. The only thing that was off was my vitamin D and my iron, but only slightly.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

    2. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

    4. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

    5. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,590
    • Most Online (within 30 mins)
      7,748

    Danny Mc
    Newest Member
    Danny Mc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
    • knitty kitty
      Oh, dear, the niacin flush!  I've heard repeatedly that the worse the flush, the more your body needs the niacin.  If you stick with it, the flushing will not be as bad in a few days.   Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days.  I've done this myself, and found the flushing is very short lived.   Stay hydrated.  The B's are water soluble, so if not needed, they'll be excreted. Hang tight, you'll be okay!
    • knitty kitty
      @HectorConvector, Step off the gas. I'm in the U. S.  That was what I remember my doctor telling me thirty years ago.  Things may have changed since then.  If I've "misremembered," I apologize.  I'm human.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet.  I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body.  I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts. When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.   I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.  I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.
    • Known1
      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up.  My multi-vitamin already has 25mg of Niacin.  The b-complex adds another 100mg on top of that.  My face, neck, and ears look like the Cardinal I use for my profile pic.  I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day.  I think I am going to drop down to taking 1/2 of the serving size.  In other words, 1 capsule instead of 2.  Hopefully dropping to one does the trick. Have you noticed any side effects from that B-complex?  It is WAY over the daily recommended values: Thanks for your time, Known1
    • HectorConvector
      Evidence from normoglycaemic studies shows that healthy people peak at ~1 hour, and they then return to baseline in 2–3 hours, not 1. CGM shows normal post-meal rises even in metabolically healthy subjects. Clinical tests use the 2-hour value to judge normal glucose clearance. Therefore the 1-hour-back-to-fasting claim contradicts both physiology and clinical diagnostic standards.
×
×
  • 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.