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Nocturnal (Nighttime) Diarrhea And Nausea
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I'm a 52 year old white male.

After several months of nausea and occasional diarrhea, I had two >225 antibody tests. At the suggestion of my doctors went gluten free. I was better right away. Instead of having 6-7 bad days a week, I was done to 1-2.

I'm quite careful about avoiding gluten and mostly make all of my food at home. But I still have occasional nocturnal diarrhea. It's almost always between midnight and 3:30 am. I wake up with a rumbling stomach and nausea, and then I have diarrhea, very soft stool, sometimes mucous, etc.

It's exhausting, as many of you know. I live in a state with poor medical care, and don't have my next appointment with a GI until mid February. Does anyone have any insight? I'm new on this site, but have learned much from so many of you already. This place has been a real life line for me in making these adjustments.

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I'm a 52 year old white male.

After several months of nausea and occasional diarrhea, I had two >225 antibody tests. At the suggestion of my doctors went gluten free. I was better right away. Instead of having 6-7 bad days a week, I was done to 1-2.

I'm quite careful about avoiding gluten and mostly make all of my food at home. But I still have occasional nocturnal diarrhea. It's almost always between midnight and 3:30 am. I wake up with a rumbling stomach and nausea, and then I have diarrhea, very soft stool, sometimes mucous, etc.

It's exhausting, as many of you know. I live in a state with poor medical care, and don't have my next appointment with a GI until mid February. Does anyone have any insight? I'm new on this site, but have learned much from so many of you already. This place has been a real life line for me in making these adjustments.

Welcome! I am a 53 year white female so maybe I can help! ;)

Nocturnal diarrhea is very indicative of gluten but it may be that you have additional food issues that are causing this. Have you tried eliminating dairy? Many Celiacs have trouble with dairy in the beginning because the enzyme used to break down lactose is produced in the tips of the villi and when those villi are blunted or gone, you cannot digest milk products. I still have to eat dairy light after almost 8 years gluten-free. I went too long without a Celiac diagnosis so when it happened, I think my gut was just too compromised. Some people get their ability to digest milk back, others do not. This is extremely common so when people complain of stubborn symptoms not going away entirely, you look first at dairy. I know, not something many want to hear but it isn't always forever. Either that, or you are inadvertantly ingesting small amounts of gluten somewhere and it's still causing you grief. This diet takes a while to nail down completely. I know how exhausting it is because that was my main issue when I got really sick...nocturnal diarrhea. Sleep is totally disrupted.

How long have you been gluten-free?

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Have you tried eliminating dairy?

How long have you been gluten-free?

Thanks for your reply. I've been gluten free for 8 weeks and I've been off diary for the same amount of time. (Before my diagnosis I was getting ill from milk and ice cream especially.)

Continued good luck to you!

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As an "older" diagnosed Celiac, It takes a lot longer than 8 weeks to get everything healed and back on track. It could be something else you are eating, like a really cheesy dinner with ice cream or maybe you just need more time.

Whoopes! Just saw you are off dairy, but you get the idea. In the beginning a lot of corn products would do that tp me, too. Corn Chex for breakfast, Corn chips at lunch and corn tortillas and frozen corn at dinner. You may find its something like that.

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As an "older" diagnosed Celiac, It takes a lot longer than 8 weeks to get everything healed and back on track.

I appreciate your input! I am keeping a good food diary and indeed too much fiber makes me worse, too much fruit, for example. Pork and beans is hard on my stomach. My go-to food is rice. It can be fixed a number of ways and it never seems to bug me. I love this forum. I've learned so much.

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I appreciate your input! I am keeping a good food diary and indeed too much fiber makes me worse, too much fruit, for example. Pork and beans is hard on my stomach. My go-to food is rice. It can be fixed a number of ways and it never seems to bug me. I love this forum. I've learned so much.

Yeah.....2 months is not very long and other foods, even gluten-free ones, will cause grief at times. I still, after 8 years, have bad days when I eat something that is harder to digest like a greasier meal or heavier foods. We just have very sensitive tummies and probably always will but it does get much, much better the longer you are gluten free. Just keep it plain and simple for awhile and add things back in slowly.

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Welcome ABQ! I too am sensitive to many foods--and have a short list that I can eat. After a bit of time--my tummy problems got much better, but it took awhile. I found that I was still eating foods that I shouldn't be, and that as I get better at knowing the "good foods" for me--my tum does much better. I agree that we all seem to be quite "sensitive" souls with equally sensitive bodies! :D

Keep checking in regularly here--You will find *amazing* support, advice, and some laughs (which we all need too) as well!

Welcome again! :lol: :lol:

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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