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

Anxiously Awaiting

Rebecca150

Recommended Posts

Rebecca150 Rookie
Rebecca150
Posted

I had my tests done on Tuesday and I am hoping I hear the results today....On one hand it would be really great to NOT have celiac but then on the other, if I do have it, at least there is something very simple and concrete I can do to make the tummy pain go away!

I did really good yesterday and the day before and didn't eat gluten anything. As far as I know. Tummy has felt pretty good but I will tell you what I am amazed about. I didn't need as much sleep last night as I usually do. I woke up this morning feeling pretty darned refreshed. Imagine that.

I figure if I DON'T have celiac, I will probably give the gluten free diet a go anyway. Just to see how I feel. But there would be wiggle room for the times when I can't stick to it faithfully. But if I DO have it, then I will be diligent about my diet. Honestly, I don't think it will be all that hard to stick to a gluten-free diet. Over the past few days I have eaten a huge variety of foods. And I feel pretty good.

Anyway, just wanted to throw my thoughts out there. I guess I am just anxious about getting my results back and I don't want to drive my family crazy talking about gluten free this or that! :-)

Rebecca

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

Celiac.com Sponsor (A8-M):


DeerGirl Apprentice
DeerGirl
Posted

I had my tests done on Tuesday and I am hoping I hear the results today....On one hand it would be really great to NOT have celiac but then on the other, if I do have it, at least there is something very simple and concrete I can do to make the tummy pain go away!

Rebecca - I totally understand. Am waiting for my appt. with a specialist in a few weeks. And have the same thoughts you have.

I figure if I DON'T have celiac, I will probably give the gluten free diet a go anyway. Just to see how I feel. But there would be wiggle room for the times when I can't stick to it faithfully. But if I DO have it, then I will be diligent about my diet. Honestly, I don't think it will be all that hard to stick to a gluten-free diet. Over the past few days I have eaten a huge variety of foods. And I feel pretty good.

I too will try out the gluten-free diet regardless. One Dr of mine felt further testing was moot and I might as well go gluten-free now, but my concerns about secondary conditions make me want to get evaluated further, though part of me thinks..... is it really necessary? I'm on the fence, though I do have that appt with a specialist.

Anyway -- good luck either way with your test results! I'm sure the other *much* more experienced folk here will have good advice about trying out a gluten-free diet.

JerryK Community Regular
JerryK
Posted

Personally, I had Enterolab tests, which came out positive.

I had Blood tests that came out negative. I had gene tests that indicated I don't have the Celiac gene.

Since Enterolab is not accepted as mainstream medicine, you could argue that I don't have a problem and I don't need to be on a gluten-free diet, since I don't have Celiac.

The problem is, I have all the symptoms of Celiac and improved dramatically on a gluten-free diet. In my opinion, after months and months of denial, the only true test (aside from a biopsy) is if your symptoms go a way on the gluten-free diet.

Now with the current understand of Celiac/Gluten Intolerance, I may never know if I truly have Celiac. My dietary response was so dramatic, I couldn't ignore it. I was having D EVERY single day. I couldn't go for a run without getting the runs. After two months, the only D I've had is the morning after I cheated and had a cookie.

So, if you don't test positive, put it in perspective. All you'll really know is you don't test positive for Celiac, it doesn't mean you don't have it, it means they don't see any indication of it. If gluten makes you sick, your body doesn't like it. j

DeerGirl Apprentice
DeerGirl
Posted
So, if you don't test positive, put it in perspective. All you'll really know is you don't test positive for Celiac, it doesn't mean you don't have it, it means they don't see any indication of it. If gluten makes you sick, your body doesn't like it. j

JerryK -- in the end that's really it - if you feel better without gluten, then gluten-free is the way to go. Which is what I'll be doing in a few weeks regardless of testing outcomes to see how I do. Did you have extra-intestinal symptoms as well?

Rebecca150 Rookie
Rebecca150
Posted
  • Author

All my test are within normal range!

But I had a hot dog bun last night and my stomache had a slight ache in the middle of the night.

So, I may not have a diagnosible disease per se, but I don't think my body likesgluten!

I'm going for two weeks gluten free and then three days with it to see what my reaction is. I'd be more than happy to eat nothing but fruits, vegetable, seeds and nuts, lean meats, dairy and grains without gluten if it means I'll feel better!

Just wanted to let you all know. Thanks to everyone for responding to my questions over the past few days!

By the way, Jerry. I love your post script quote in your sig line.

DeerGirl Apprentice
DeerGirl
Posted
All my test are within normal range!

But I had a hot dog bun last night and my stomache had a slight ache in the middle of the night.

So, I may not have a diagnosible disease per se, but I don't think my body likesgluten!

I'm going for two weeks gluten free and then three days with it to see what my reaction is. ....

Rebecca -- good luck on your gluten-free diet trial. Did your doctor offer any advice on how to proceed from here?

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
    3. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
    4. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the...
    5. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,367
    • Most Online (within 30 mins)
      7,748
    Pauline14
    Newest Member
    Pauline14
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.