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

Sick And Getting Worse


still.joyful

Recommended Posts

still.joyful Apprentice

Yes, like everyone else here, I am TIRED OF THE STUPID IBS TITLE!

I am 23 going on 99 (well, my body certainly feels like it ;) and I've had a 'sensitive' stomach my ENTIRE life. Be prepared for bluntness...

I had bad colic as a baby. Growing up as a child, I'd have such bad 'gas pains' that I couldn't walk. Going into my teen years, I started developing 'IBS' like symptoms (frequent bowel movements, urgency to use the bathroom). In college, I developed gallbladder disease, but don't fit the stereotype of someone with gallbladder disease (I am a stick! 94lbs, 5'3''). Now out of college, I have pretty much every digestive problem imaginable...here they are, the lovely symptoms:

Gas, bloating, horrible abdominal cramping, stomach ache after nearly every meal, weight loss (I've lost 12 pounds since college), the 'runs', and (gross, I know) something that appears to be mucous in my stool. I also get stomach viruses often...I don't get it! I am also lactose intolerant, I can handle very small amounts of dairy, but I haven't had a glass of milk in 10 years. Stool also tested positive for high white blood cell count. Does any of this sound familiar to anyone?

In college, I also developed these symptoms: Severe night sweats, muscle cramping and spasms, heat intolerance, dizziness.

Went back to the doctor today (unwilling, I hate going to the doctor!!!) and now they want me to go on a gluten free diet. My blood test didn't present any gluten allergy, but I haven't had a colonoscopy yet...that's next, and I am dreading it VERY much :(.

Sad thing is, I LOVE TO BAKE! But baked goods make me sick, I'm not sure if it's the sugar or the gluten. I am not sure what to do at this point...I'm tired of waiting, that's for sure!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

These are the blood test that I hope you had:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Can you give us your blood work results? An endoscopy exam and biopsy would be helpful if your doctor suspects Celiac.

GlutenWrangler Contributor

I think the colonoscopy will help to answer a lot of questions for you. It can rule out a bunch of different things and narrow things down a little. Good luck and I hope you feel better soon

-Brian

ravenwoodglass Mentor

Your history and issues do sound like you could be celiac. You should ask the doctor to do an endoscopy while he is doing the colonoscopy. Or perhaps even do the endo first and leave the coloscopy for later. The endo is the test he should do if he suspects celiac disease and there are no nasty preps to drink before it. If you do have celiac it really is not as bad as you might think. You can still bake and eat stuff like pizza and cakes they just won't be made of poison. The difference in your quality of life once you are on the diet will be incredible and well worth the trouble. It can be hard at first but you have come to the right place for support and guidance.

ShayFL Enthusiast

I second checking to see if they did the complete Celiac panel (NOT GLUTEN ALLERGY) and Endoscopy (NOT COLONOSCOPY) at this point. You can do that one later.

RiceGuy Collaborator

I agree that Celiac seems probable. But, with all the symptoms you listed, I'm also thinking that those nasty opportunistic microbes could be adding to your discomfort. Intestinal yeast overgrowth (AKA candida overgrowth) has been (or is) a problem for many on this board. There are numerous threads about candida, and one test which is supposed to be accurate is called the Open Original Shared Link, which you can do yourself.

Hope you get well soon! You've come to the right place too!

still.joyful Apprentice

Hi All,

I do not know what to think at this point and I am very scared/frustrated. I had an endoscopy 1.5 years ago before having my gallbladder removed and it came back normal; the doctor didn't do a biopsy. I tested negative for Celiac's disease in the bloodtest. However, when I started developing other symptoms, muscle weakness, dizzy spells, low blood sugar issues, I got a blood test that revealed that I tested positive for antinuclear antibodies (which means I have some autoimmune disease). The doctor said he wouldn't be able to diagnose me until I developed new symptoms. That's the only blood test I have knowledge of, I haven't had the full panel.

I think I mentioned this earlier on, but I had a high white blood cell count in my stool when it was tested a few years ago.

Basically, I've had stomach problems my ENTIRE LIFE. But they've gotten worse as I've gotten older. I have a constant burning pain in my stomach and nausea, with stomach cramps and occasional D. I notice that the only time I feel no pain is when my stomach is empty, but then my blood sugar drops.

I've been on the gluten-free diet for 2 days and I haven't felt nauseous these two days and my stomach cramps have subsided...I know it's still too early to tell, and I really don't want to get too optimistic, but I don't know where to go at this point. Is there a test they can do to see if I'm just intolerant? I am lactose intolerant...going back to the gastro in a few weeks, is there another test I should request??

Thanks so much for your replies, guys!


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

All of the symptoms you listed are common in people with Lyme Disease or other chronic infections.

Also, a high white blood cell count can be caused by infection.

Your Celiac results may have been negative but gluten intolerance is also common for those with Lyme or chronic gut infections. Its also definately possible to have more than one condition contributing to symptoms.

I agree with the previous posters...get the full celiac panel and the endoscopy BEFORE you start the diet. Once the tests are out of the way you can try the diet and see if it helps you. If you continue to have problems I would look into other possibilities for those symptoms (esp. Lyme).

For more info. on Lyme check out this thread:

Open Original Shared Link

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. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

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

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,378
    • Most Online (within 30 mins)
      7,748

    mlenn51
    Newest Member
    mlenn51
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      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/
×
×
  • 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.