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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,900
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • 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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.