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

Casein Intolerance Symtpoms- Extreme Thirst?


dac07011

Recommended Posts

dac07011 Newbie

I found out that I had celiac disease a year ago. My symptoms were never too severe- just extreme bloating, gas, and embarrassing noises! Since going gluten free, my symptoms have completely subsided- I can now hang out with people after I eat and not be worried about my stomach! HOWEVER, recently, my symptoms have begun to flare up a bit. Definitely less severe, but they are the same symptoms that I have when I eat gluten. Another recent symptom is EXTREME thirst. I drink around 160 oz a day, and urinate very often because of this. I saw an endocrinologist but he didn't see anything related to hormones that would explain the extreme thirst. I am starting to see a pattern of the increased thirst after I eat milk products, such as ice cream. I'm worried that I may have developed a casein intolerance. My question for you all is: has anyone had the symptoms of extreme thirst related to a casein intolerance? And also, do you recommend I go on an elimination diet to make sure it is dairy or should I just go see my GI? Are there any tests that they can actually perform? Sorry this is so long! Thanks so much!


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

One of my most noticeable symptoms of gluten intolerance was extreme thirst. Although there were symptoms from dairy, I didn't notice thirst from that.

What I'd do in your case is to simply try eliminating dairy, and any other suspects you may have, and see how you feel. Then reintroduce one at a time, and see what happens.

missy'smom Collaborator

Extreme thist can be a sign of blood sugar imbalance. Have you been tested?

Ice cream has a fair amount of sugar in it, do you have the same thirst after other dairy that has no added sugar?

If that was your symptom for casein allergy then you should get the same symptom with a similar ingredient in a similar portion, something like milk or cream, that you do with icecream, after all icecream is made with them.

I have a number of food allergies and find that I do crave something when I get symptoms/reactions-like runny nose, mouth burning etc. and crave sweets or alcohol or something to take that away. It took me a while to realize what was going on. Now I recognize the symtoms more clearly. It makes sense that you might be thirsty. It's the histamines I think. I was told to drink a lot, keep the system hydrated after an allergic reaction so your thirst might be serving a good purpose.

I don't know if there is a casein intolerance. There is a casein allergy. I have it. I was tested with skin testing. There is also lactose intolerance. There is a test for that, but I don't know what kind. There is also what is called a milk subfraction test-blood-which tests for about 4 components or dairy. I had that done. Wasn't helpful for me but there may be some variance with how labs run it and it may/may not be helpful for others. I don't know how accurate it is or what it's reputation is. I was just trying to put toether pieces of the puzzle and gave it a shot.

  • 5 months later...
cavernio Enthusiast

I know this is old, but you didn't get a lot of answers.

I wouldn't call my own experience extreme thirst, but since I went gluten free

I noticed that dairy makes my mouth very dry-feeling, (while not actually being dry because I feel my salivary glands are working just fine), especially my tongue, even in small amounts. It can make me want to drink a lot of water only to pee it out an hour later, but it feels more like pseudo thirst to me.

I have since stopped all dairy and my intestines seem happier for it, and when I screwed up once and had a full serving of pesto with parmesan, I felt like I was getting the flu the following day; a flu which cleared up the next couple of days.

I am going to ask my GI about casein and dairy specifically when I see him in a couple weeks time.

I think there are tests which can be done to measure IgA to casein, however, I'm not sure if they're ever done as a diagnostic. I say this because there are research papers which seem to be able to figure out that some celiacs tissue react to casein through IgA responses to it, but I've never heard of GI's performing casein testing. There are things like Enterolab which tries to find IgA responses from your stools? I think, and there are special 'allergists' which have been trained to find non IgE 'allergies'.

To my unprofessional mind, a thirst response could indicate potential kidney prolems due to allergens. In IgA nephropathy, where the kidneys get overburdened and can get clogged and damaged from too much IgA in the blood, or so I've read online, thirst seems like a very, very likely symptom.

  • 3 years later...
remixmouse Newbie

Hi, I found this post when searching about the thirst that I get (mostly at night) and this is the first thread thread that describes a similar symptom:
extreme pseudo-thirst in the back of my mouth, top of my throat and my tongue, while my salivary glands are working just fine, and no amount of water seems to make an impact.

I've been dairy- and gluten-free for 6 months to see if it makes a difference but it hasn't. Have you found anything else out about your symptoms? Could there be another food that is causing it?

gilligan Enthusiast

When healing, I didn't have extreme thirst, but I lost so much weight that I became seriously dehydrated several times.  I started drinking unflavored Pedialyte to alleviate it.  While at the ER once for dehydration, a nurse told me adding a small amount of sugar and salt would do the same thing cheaper.  I think it was 1/4 tsp of each.  Maybe trying that would help with electrolytes a bit and you wouldn't feel so thirsty.  

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

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.