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  1. Hi Ravenwoodglass, You make a good point. There is another family out there. I'm feeling calmer now. Going to keep up the Gluten-free Casein-free for awhile and see what happens.
  2. Thanks, all! I guess what I really want is some sort of clarity. While it's in the realm of possibility that my whole family has celiac disease, I think it's unlikely. I haven't heard of DQ 1, 1 celiac family. Given our genotype I think it's much more likely that we have some sort of non-celiac gluten sensitivity. But I feel confused because what exactly is non-celiac gluten sensitivity? I suspect it's not just one issue thing -- it's lots of different things, some serious, some not. Some permanent, some not. Some caused by diet, some caused by other things. But that's leaving me confused about what to DO. I have not really noticed my daughter feeling better since we went gluten-free/CF a month and a half ago. Part of me wants to crack down on more foods -- do something along the lines of the SCD and see what happens. Another part of me wishes that when my daughter's pediatrician said, "Don't worry, it's just toddler diarrhea," that I had smiled and nodded and believed him and not worried. Maybe everything would be fine. My mother thinks my daughter is fine and I am crazy overreacting.
  3. I am in the mood for a rant here because I'm feeling frustrated and confused and I'm questioning the meaning of our EnteroLab stool test results, which we just received. A little background: I found my way to this forum because my three-year-old daughter started having GI issues (diarrhea, white stools, constipation) in December. We got an initial casein/gluten test for her, and when that came back positive for both, I ended up getting the Complete Gene Panel test from EnteroLab done for her and our entire family. The results are the last members of the family are finally in as of this week, and I just don't know what to think. We seem to be testing positive for just about everything, even though we don't have a celiac gene. Here are our test results: DD (age 3) Fecal Anti-gliadin IgA 148 Units (Normal Range <10 Units) Fecal Anti-casein (cow
  4. Oops! This posted before I was finished. I'm going to finish writing and then repost.
  5. I'm hoping for some opinions here. I'm wondering how you tell the difference between glutening and the stomach flu. Are there different symptoms? I'm not sure what to think about my three-year-old daughter today. She had diarrhea at about 10:00 in the morning, and she was crying and feeling awful, so we went upstairs to cuddle in bed. Well, I was shocked because she uncharacteristically fell asleep, hours before her usual nap time. At first, I was thinking that she must have been glutened/caseined but would that have made her fall asleep so early like that? She (also uncharacteristically) slept like a log for three hours and then woke up perky as can be, and now she seems totally fine. So what happened? I am so confused!
  6. AN UPDATE FROM THE OP: Well, we got our test results back from EnteroLab and DD's test results said she sensitive to gluten AND casein. We didn't do the whole panel of tests, just the very basic $99 gluten test and $99 casein, so I don't know more than that. I expect we will do further tests and test the whole family soon. Regardless, we're going to have a gluten-free household. I don't want there to be things on the shelf that DD can reach that will make her sick. Getting the Enterolab testing was such a good thing because it gave us something to back up my intuition. It was what made my husband accept that there was a really problem. Before that, he was going along with the diet, but begrudgingly. Now, he's accepted it as something that's necessary. I have been thinking about writing a letter to our soon to be ex pediatrician. I would like my letter to be constructive -- to help him consider gluten insensitivity or celiac when a child presents with these symptoms. I'm thinking of writing a letter and attaching some resource written by doctors for doctors about diagnosing celiac disease in children. Has anyone written a letter like that here in the past? Or have you seen a document like that would be helpful.
  7. Hi Fiddle Faddle, Thank you for reaffirming that I should keep looking for what lies beneath this toddler's diarrhea diagnosis. There is a local gluten-free support group, and I've applied to join their Google Group, but I haven't been accepted yet. I'm hoping to ask around there before I find a new physician. Their website says that there is a local internist who HAS celiac disease, which sounds promising. I am DEFINITELY done with this pediatrician. As for vaccinations, we don't have to deal with that for two years, but thanks for the heads up. It sounds like you all have had some scary experiences with them! I will make sure to keep that in mind as we cross that bridge. Are celiac kids always immuno-compromised, even when they are doing well on a low-gluten diet? My daughter was on NO medication when she had her white stools, and they lasted for weeks. It's only just been the past few days that she's had yellower stools. In addition to eating gluten-free, I really want to work on improving her intestinal flora by feeding her a lot of naturally probiotic foods. Does anyone have any suggestions. Is this horrible? I keep looking a few of my first-degree relatives who happen to be irritable a lot and thinking, "Hmmm... I wonder if he has celiac disease?"
  8. Thank you all for your support -- I feel so much better having heard from all of you to trust my intuition. I feel like people in my real life think I'm overreacting -- especially since we have a diagnosis or sorts (yes, toddler's diarhea is just IBS in a toddler). The way I got to celiac.com was I started typing my daughter's symptoms into Google, and then I found wrongdiagnosis.com. There, when I typed in her symptoms, they ALL came back as matching up with celiac disease. And then I came here, and some of the stories of celiac and symptoms lists sounded eerily like what she has been experiencing. Nightwaking and more. Because of all of that, my intuition is still strongly telling me to keep pursuing celiac disease, since it still seems to me that celiac disease is a better match for her symptoms than anything else I know of. Conviviality, I was strongly tempted to get the malabsorption, etc. tests from Enterolab, but I didn't order those -- if the gluten test comes up positive I will. As for whether to go to a GI, I've been debating that. I'm thinking that other people in my family would take gluten-free more seriously if she had an actual diagnosis. That doesn't seem like a great reason to undergo a lot of medical procedures.... Thank you all for your input. It is such a great thing to have the internet at times like this.
  9. Thanks for all of the reassurance! I wish I had been more assertive yesterday in the doctor's office, and maybe we would already have had some blood tests. I just hadn't heard the term "toddler's diarrhea", and I wasn't really sure what it was. I thought maybe it could encompass more of those symptoms. But then when I got home and read about toddler's diarrhea, I realized it was a bad diagnosis. I've been needing to switch peditricians, anyway, so I think I will go ahead and try to find a different doctor who is more helpful. I'm hoping to join the local gluten free email list and ask around for a good doctor. And I may also just call this pediatrician back and request more tests. I'm afraid of being thought of as a crazy hypochondriac parent, but I guess I just need to get over that. I'm a little nervous about starting a gluten-free diet. The good news is that we already eat a lot of whole foods and cook from scratch. But it's still a big change! We have so many routines that this disrupts.
  10. My three-year-old daughter has been having intestinal symptoms since for about 6 weeks. After looking around this website and others, it seems like her symptoms could match up with celiac. It started out when she got a stomach bug and started having diarrhea. The diarrhea lasted for a long time (maybe 11 days) and then she started having white, floating stools. She also has gone through periods of extreme constipation. She's been having a horrible time sleeping, and she wakes up at night and asking for milk. Oh, and I've been noticing blood on the toilet paper when I wipe her bottom. In the past couple of days, she has had pale yellow stools instead of white ones. Still floating. She has not had actual diarrhea in about a month. Yesterday we went to the pediatrician who diagnosed toddler's and he diagnosed toddler's diarrhea -- which just makes no sense to me. Toddler's diarrhea is only a diagnosis you should make after you've ruled other options out -- it didn't seem like he even bothered to rule out other options. And she isn't even having diarrhea anymore -- the floating white stools seem like symptoms of something else. So I just feel dissatisfied. I'm not convinced that she necessarily has gluten intolerance, but it seems like she might, and I hate to start feeding her gluten when I don't think we've ruled out the possibility that it will make her sick. My action plan: I am planning on gong taking her off gluten for awhile and seeing what happens. I also ordered the casein and gluten sensitivities from Enterolab, so we'll see how those turn out. I have not decided whether to go see a pediatric GI yet. Is there any reason to do that? My main concern that the white stools could be a sign of liver disease or something like that. My husband is very skeptical about taking my daughter off of gluten because "she doesn't have white stools all the time." I am also wondering about how to interpret my daughter's waking up in the middle of the night craving milk. Could that be a sign of a casein tolerance? Or a side effect of gluten intolerance?
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