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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Thirst
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36 posts in this topic

A lot of you know I have gone back on gluten for a time to be tested. I have noticed since going back on it; aside of feeling just horrible, that I am constantly thristy all the time. Now this is a symptom I had before going gluten-free, and it went away when I was gluten-free, but I didn't even notice it was gone until going back on gluten and finding that it is back. And, wow is it back with a vengence! Anyone else noticed this? Is it a symptom of celiac disease, or is it maybe that gluten foods just have more dehydrating ingredients (I know that sounds weird but I am sure it is possible)? Thanks!

Deanna

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I would talk to your doctor about this symptom. Excessive thirst is a symptom of diabetes. Have you had your blood sugar levels checked?

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Another idea, do you find yourself taking less fluids in when you are not gluten-free? Also, what are your symptons now? You could be loosing more fluids through loose stool or something also those lines?

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I have been tested for diabetes, and they have told me I could have some hypoglycemia (spelling?). Yes, I found that I wasn't drinking as much when I was gluten-free, but I didn't realize it until I started on gluten again. My thirst is always for water too, nothing else helps it. I actually suffer from terribly bad constipation, not diarreha. My other symptoms are the common celiac disease ones exhaustion, gas and bloating, irritability, etc.

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Have you been tested for anemia? When my levels were very low--I was thirsty all the time and craved ice. Now that I have had several iron therapy sessions I am not thirsty all the time.

Vicki

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I too was thirsty all the time until I became gluten-free 2 1/2 months ago. All I wanted was water it was like I craved it all the time. Now I drink very little of it. I didn't realize it until you posted this message. That's strange.

Sheryl

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I'm also thirsty all the time. Yes, I've been tested regularly for diabetes, which runs in my family. I also have the constipation, bloating, gas, fatigue stuff as celiac symptoms and have had anemia previously. I may have borderline anemia now, since I get cold easily, have TERRIBLE fingernails (brittle, vertical ridges, thin and easily chipped) and often feel tired. I won't take iron pills after one iron therapy session wherein I went from diarrhea to constipation from day to day. I try to get iron from iron containing foods. I always assumed thirst was a GOOD thing, because we're supposed to drink a lot of water anyway. I notice when I don't drink enough fluids, it's easy to mistake thirst for hunger and eat when I'm not hungry and feel much worse, than if I just drank some liquids. :blink:

BURDEE

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I won't take iron, I am constipated enough as it is! lol

I did have some problems with anemia with my pregnancies, but not since. However, I have not been tested for a long time either, so maybe I will bring it up with the doctor.

Thanks!

:ph34r::blink: <~~my daughter's choices...hehe

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that is pretty funny that you mention the thirsty thing! for YEARS I was always so thirsty (and had to pee all the time- imagine that.) they tested me for diabetes three times, and the third time they said I was hypoglycemic. I finally had to put a stop the diabetes tests.

Well, I have been gluten-free for 9 months now, and doidn't notice a difference until I get contaminated and then boy, all I do is drink drink drink. My pet theory is that my body is trying to flush itself out. Our bodies are really trying their best...

Lib

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Hey Lib:

The flushing out theory sounds good to me ... even if I never get diarrhea. I find that drinking lots of warm water really helps with my cramping pains as well as helping resolve my inevitable constipation from gluten/dairy/soy slips. :o

BURDEE

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This is a little bit of an old thread, but wanted to add that I had incredible thirst. After being gluten-free for two weeks, I cut my water consumption in about half. Now I've stayed there. I think a lot of water is good, but you can drink too much which dilutes your minerals. I was advised not to drink so much because I had low calcium/potassium but I just couldn't do it. Gee.....wonder why the c/p was low!!!!??? DUH! :D

Brenda

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Thirst was one of my main symptoms, funny it's not listed as such.

But Celiac can actually die of dehydration from not absorbing water,

so thirst is a huge and ought to be used to help diagnose us.

I can't tell you how thirsty I was.

gluten-free nine month, only thirsty after several alcohol bev. That still doesn't compare

to how thirtsy I used to be

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Isn't there a celiac related disease that causes dry eyes and mouth? I can't recall the name of this condition. Perhaps your thirst is really this?

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I was going to post a question about this in the babies and kids section. My daughter, Shirley, started sleeping throught the night when she started soy formula at 2 1/2 months (I believe she was allergic to milk because lactose free formula didn't help her "colic" but her ped said she couldn't be because milk allergy is rare.) When she was about ten months old she started waking at night again. I thought she was having a growth spurt and needed more food so I'd get up with her and warm a bottle in the middle of the night, two or three times a night. She would suck on the bottle slowly like she didn't really want it, but since she was a thumb sucker I figured that she MUST be hungry or she'd just suck her thumb to fall asleep. After about two weeks of this I was exhausted (prego with Jeffy, too :) ) and took a bottle of water to bed with us. When she woke, I just handed her the bottle. She gulped down 4oz, burped, then said, "wa wa" so I gave her a refill and she drank even more then fell asleep. From then on I took two full bottles of water to bed with us so we could get a little more sleep. Tommy (baby #3) is 9mo now and he's been waking about every 1 1/2 hours at night, sometimes to nurse but usually just wanting water. We've been gluten-free for a month except for a few slip ups. I hope he quenches his thirst soon because I haven't had a full night of sleep since he was born!

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When I fell sick I was so thristy - it was horrible - I drank and drank all the time - then I would be up all night going to the bathroom - but I was even thirsty at night too! I was tested over and over again for diabetes - but everything was fine there.

Even though I was constantly drinking, I had rough battle with dehydration -- I was in the hospital for that at least 5 times. Just before I was diagnosed with celiac, and the last time I was dehydrated, I got and keep *gerber liquilytes on hand ( it replenished fluids and minerals lost in D and dehydration). It is actually for babies and little kids, but it worked for me!!! I also found drinking propel helped me tremdously as it has some vitamin B in it.

I have not been dehydrated since I stopped eating wheat, nor have I had extreme thirst like I had. I still drink one propel a day, it gives me a bit of energy during the day with the vitamin B.

Just like others have mentioned = watch rinsing away all the vitamins and minerals - I did that several times.

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opps

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I'm so glad I found this post! I too have had this experience of intense thirst. I would drink over a gallon of water a day and was still thirsty. I would also eat ice incessantly (Pica perhaps?). I could go through a 5 pound bag in a couple of days. After being diagnosed w/ celiac disease/anemia, I went on the gluten-free diet and the thirst/ice cravings subsided. SO glad I don't have to deal w/ that any more! ;)

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Im really glad this thread got brought back too.

After drinking gallon+/day, I was just puzzling why I wasn't drinking so much water anymore and getting kind of worried about it. Especially because I had the dehydration IV too.

Sounds like it might be normal when going gluten-free!

Does anybody else's water taste different now too? I also seem to want it a little colder than I did before.

I'm so glad I found this post! I too have had this experience of intense thirst. I would drink over a gallon of water a day and was still thirsty. I would also eat ice incessantly (Pica perhaps?). I could go through a 5 pound bag in a couple of days. After being diagnosed w/ celiac disease/anemia, I went on the gluten-free diet and the thirst/ice cravings subsided. SO glad I don't have to deal w/ that any more! ;)
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My co-workers used to say how "healthy" i was because I could easily go through three gallons of water and more during the work week. After I went gluten free i came home one friday and the third gallon i had waiting to go to work was still unopened and i had brought home another 1/2 gallon..... :lol: (and I don't have diabetes and my iron is fine)

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I recently was glutening myself (unknowingly) for over a month. I was, and still am, incredibly thirsty. My lips are also dry. If I hadn't just had a full set of blood testing, I would be worried about my blood sugars, etc.

This is the longest gluten reaction I've had in my 2 years gluten-free. I'm just trying to drink as much good water as I can, hoping that it'll make it all pass quicker.

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Same here family members would make fun of me for drinking so much water they would say do you really enjoy drinking all that water, well I would say I am very thirsty something wrong no body needs that much water. Well after getting dgn I not as thirsty and have to make my self drink it now but still drink alot noting like before but with a lemon in it .

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I can't believe I found this topic!

I suffer from extreme thirst all the time. All I drink is water, too. Waiters hate me because they'll have to refill my water glass 8+ times. In fact, after around the 4th glass, some of them will actually bring me a pitcher of water. I go through gallons a day. Except...I've been gluten free for over a month now, and I'm still constantly thirsty. I've never had my iron levels checked, but because it runs in my family, and I'm obese, I'm checked for diabetes every 6 months or so. The last time was in March, I guess, and I was clean. Is this normal? My family is getting upset because I go through the water bottles so fast.

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I won't take iron, I am constipated enough as it is! lol

I did have some problems with anemia with my pregnancies, but not since. However, I have not been tested for a long time either, so maybe I will bring it up with the doctor.

Thanks!

:ph34r::blink: <~~my daughter's choices...hehe

If you do have to take iron, the hematologist that treated me for anemia told me to get carbonyl iron instead of iron sulfate. I did and I didn't experience the constiapation issues several of my co-works have when taking iron. And she also told me to take it with citrus or pineapple juice to increase the uptake of the iron. It must have worked because they told me it would take 6 months to come back to normal levels and I was back to normal levels in 3 months.

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Add me to the thirsty list. I used to drink 3-4 gallons of water a day! In restrospect, it's easy to see that the more wheat I was eating, the thirstier I got. At the time, though, I never made the connection.

Instead of dehydration, I ended up in the hospital with hyponaetremia -- I drank so much water that I diluted my blood so much that it couldn't get into the cells of my body. Of course, the doctors in the hospital never tested me for celiac. They just wanted to send me to a psychiatrist. After all, it had to be psychological; there's no disease that makes you incredibly thirsty! :rolleyes:

I've been gluten-free nearly 1.5 years (after being undiagnosed for about 10). I still probably drink more than most people, but way less than I did. It's nice to not have to carry water with me everywhere I go, or look for bathrooms wherever I am.

I got glutened last week --- definitely noticed increased thirst (and increased airborne allegies). I have absolutely no doubt that it's connected to celiac, regardless of what the idiot doctors say.

BTW: I rip on doctors alot because so many of them misdiganosed or mistreated me. But when I finally found a good one, he spent 6 months testing me and wouldn't give up til he diagnosed me. I had a check-up recently and he told me that, now that he knows what to look for, he's diagnosed 3 other celiacs in the past year. That's after 30 years of never diagnosing anyone with celiac! There are some doctors who actually try to do a good job.

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actually, there is a disease that makes you always thirsty - it's called diabetes insipidus ("water" diabetes) and it's what they thought I had (it's usually caused by a brain tumor or head trauma, so I had an MRI of my brain and all kinds of other tests to no avail). I was always drinking a ton of water (but I thought it was normal) and going to the bathroom 25 plus times/day. That's why I started down this path that finally (5 years later and 11 doctors!) got me dx with celiac. I did 4 or 5 input/output tests (where you have to collect your pee and record your liquid input and output for 24 hours) and I always peed out more than I took in in 24 hours. All the drs said that wasn't possible ( that's why I had to do so many tests), but I wasn't making this up ;)

Anyway, luckily I don't have a brain tumor and it's "just" celiac. :)

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