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

No Prior Symptoms -- Intense Dehydration?


newbaker

Recommended Posts

newbaker Newbie

I got a diagnosis of celiac disease a few weeks ago. I keep seeing people say that they had GI symptoms for a long time before they were diagnosed, but I didn't have much warning. I'm wondering if anybody has had a similar experience. I'm a bit surprised at the diagnosis, but am trying to follow the gluten-free diet which has been helping so far (about two weeks now). I'm also hoping people with more experience might offer me answers.

My biggest question is about celiac disease coming on very quickly. Until a few months ago I wouldn't have said I had any GI issues unless it was correlated to a large meal at an iffy place. It took days to go from no problems to severe dehydration for no reason I can find -- ended up in the ER with an IV although I'd been drinking 16+ big glasses of water every day that week. Even with the IV fluids, and with eating more than usual that week, I'd had lost over 15% of my body weight within 3 days. I think a lot of how ill I've been since then was made worse by that episode, so I'm worried that something this bad will happen again -- so I'm wondering if anybody has had similar experiences and what's happened since then? How long has it generally taken people not to need to be too worried about dehydration?

Since some of the blood tests were done while I was in hospital, I'm not sure yet which ones were showing things that led them to believe it was celiac disease. I know that a bunch of blood tests were done, and an MRI showed something about not absorbing water, but I see a lot of people here mention that doing an endoscopy is necessary. Since I've already stopped eating gluten will doing one now give any more information than the blood tests and MRI? Has anybody found benefits down the road to having done an endoscopy?


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

If you were already diagnosed, you don't really need an endoscopy (which looks at your small intestine for damage to the lining of it) unless your doctor recommends it to aid in further diagnosis of what could be additional issues.

The majority of people with celiac disease are still undiagnosed because of the prevalent myth that one must have G.I. issues and weight loss and wasting as the primary symptoms, when in reality celiac can cause many different symptoms and auto immune problems, even weight gain because of thyroid problems, and severe weight loss is more likely the acute end phase. In our society, with our eating habits frequently causing "heartburn" it is considered almost normal to be having to use an acid blocker after a heavy meal, or gobble down "Tums," but doctors do not realize that a lot of heartburn could be a sign of celiac and celiac caused acid reflux disease.

Testing is best done while still eating gluten. In your situation, continuing to eat gluten might be so dangerous, that the doctors thought that what tests they have done are sufficient, especially if you are already responding to a gluten free diet.

As long as you continue to eat gluten free, drink enough water, and eat carefully, you should be okay with the dehydration. I have to be careful with it, but it is not because I am having any GI issues, but because I live in a part of the country where a high of 90

1desperateladysaved Proficient

Extreme thirst is a symptom which I have had. I think it is related to Celiac. I now think that I am dehydrating during attacks. Symptoms have included bright yellow to nearly orange urine, and dry mouth. I also don't sweat or have tears at the worst of these times. :(

I was recently cautioned by my doctors to stay out of the hot sun. I was swollen and had a rash. They didn't exactly explain to me why.

I think I have been reading that the small intestine has difficulty absorbing water. That being the case I am not sure if drinking more will solve the problem.

I hope you will heal up enough to maintain your fluid level the normal way.

DT

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
      132,376
    • Most Online (within 30 mins)
      7,748

    Citydweller
    Newest Member
    Citydweller
    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.