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Hadleygirl02

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About Hadleygirl02

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  1. My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal? My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. sad.gif The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy. I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased. All blood tests normal. Stool tests normal. She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc. I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist. I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased? What is my next step?
  2. My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal? My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy. I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased. All blood tests normal. Stool tests normal. She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc. I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist. I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased? What is my next step?
  3. Oh. Maybe that was what we did too. Yes, it was through the pediatric gastro. I *thought* they were also checking for fat levels--which can indicate celiac disease? But, anyway, no it was not through Enterolab, just our doctor. HA! It was super fun! I wonder if it was the same as yours? I was given three different containers for each day (3 days total.) Two of the containers for each day were filled with some sort of liquid, and the other one was empty, and had to be frozen. YUCK.
  4. I posted this in Parents of Kids/Babies with Celiac... But thought I'd get extra opinions here since this is the symptoms/diagnosing forum. My daughter has lots of symptoms: --major gastro issues since infancy --chronic constipation (takes Miralax daily) --abominal pain that has become a daily thing the last couple months --frequent diarrhea in between being constipated --explosive tantrums --gas --foul smelling poops --floating poops that are difficult to flush --hip/leg pain off and on --rash on bottom for a year and a half (did not respond to antibiotic creams, oral antibiotics, etc) that was swabbed for DH, will get results this week She had a blood test last week--CBC, and the preliminary results were normal--tested for C-Diff bacteria, thyroid issues, etc. Normal. We are still waiting on the celiac panel as it had to be sent out. I also did a 3 day stool test and we got those results back today--NORMAL. I am kind of concerend. Not that I WANT her to have celiac disease, but at least it is an ANSWER to her issues, and there is a solution. My big fear is that we will never get an answer as to what is causing all her GI issues. How accurate is the stool testing? Can you have a negative stool test, but still a positive blood test? Her gastro. says if all this is negative, we will move on to an ultrasound, etc. Thanks in advance!
  5. My daughter had a blood test last week and we are still waiting on the celiac portion of it. Hopefully, today or tomorrow those results will be in. I did a 3-day stool collection and we did get those results this morning--NORMAL. It is not that I WANT her to have Celiac Disease. But I just want an answer. In a strange way, I did feel some sense of relief when the gastro told me that she strongly suspected celiac--because it is an explanation and there is a SOLUTION. My big fear is that we will never get an answer as to WHY she has so many GI issues. The dr. said if the celiac tests all come back negative, we will move on to an u/s and possibly an intestinal biopsy, etc. I just want some sort of answer. How accurate is the stool testing? Anyone ever had a stool test come back negative, but blood test come back positive?
  6. My daughter had a blood test last week--we are still waiting on the celiac panel to come back. I also did a 3-day stool collection and those results are in-NORMAL. I am getting concerned. Not that I WANT her to have Celiac Disease, but at this point, I just want an ANSWER. In a weird way, I felt some sense of relief when she saw the gastro and they said they strongly suspected celiac..just because it is an explanation! And there is a solution! Is the stool testing a good indicator of having celiac or not? I think, as parents, we can take any answer that might be thrown at us, but its the WAITING and NOT KNOWING that gets to us. The gastro said if all the celiac tests come back negative, we would move on to an ultrasound and possibly an intestinal biopsy, etc. My big fear is that we will never get an answer as to why she has so many GI issues. Anyone had a stool test come back negative for celiac, but still a positive blood test?
  7. I don't really have an answer, but your daughter's rash sounds like my daughter's rash. She is 5 and still wears pull-ups at night, as well. The rash first appeared about a year and a half ago. We had just been on vacation in the Carribbean, and I first assumed it was some sort of thing she had picked up on the beach--sand fleas, irritation from a wet bathing suit, irritation from sand, etc. I took her to the ped. after it didn't go away within a week or so, and he prescribed an antibacterial cream. Didn't work. Then we tried antibiotics and lotrimine (sp) cream. Also, did not work. At this point, the rash really did not bother her so I dropped the matter. It would come and go...always present to some extent, but sometimes would be worse than others. I really began to think it was just irritation from her pull-ups at night. Switched brands a couple times. Then we went back to the doctor about 6 months ago and tried an anti-yeast cream. Looking back I am IRRITATED with her ped (who I otherwise really do like and trust!) because he never took a swab or skin biopsy. This is where the "Bad mom" feeling comes into play. since the rash's itchiness is MINOR, I let it go. I think Hadley got used to it, and I got used to seeing the red, pimply spots... I just chalked it up to something she would have to deal with until she outgrew wearing pull-ups at night. Fast forward to last week....when we had her appt. with the pediatric gastro for some celiac symptoms....they informed me that the rash can go along with Celiac Disease. BUT I will say..she does not have the classic symptoms of DH in that her rash really does not itch much at all. It does a little bit, but not the way DH is *supposed to.* From everything I have read, DH is unbearably itchy and painful, and Hadley's just ISN'T. On a scale of 1-10, 10 being itchiest, I would give it maybe a 2 or 3. They took a skin swab at her appt. and said we would have results in 10 days. Her blood panel for Celiac should be back today or tomorrow.
  8. MY daughter, Hadley, is almost 5 1/2. She has struggled with constipation issues for pretty much her entire life. She did not pass her first stool as an infant within 36 hours and we had to give her an enema...glycin or gleecin or something? I don't remember. She was an extremely late potty-trainer. She was wearing underwear finally at age 3 and could use the toilet to pee, etc. BUT she continued to poop in her underwear for another year and a half. Even after turning 4, she would still have occasional accidents--major poops in her underwear. Encopresis is what her ped. called it, and finally at about 4.5 years old we started her on Miralax. GODSEND! Miralax keeps her pooping regularly, and her poops are soft. (although if we miss even 1 dose, she gets constipated again) Before, she used to sit on the potty and cry, and I would have to count to 3 with her, help her take deep breaths, etc--I felt like a labor coach! biggrin.gif BUT in the last year...she has still continued to have *issues.* Symptoms: --FOUL smelling poops --her poops are floaty-and difficult to flush --sometimes they have a filmy, slimy look to them --gas --distended belly at times --rash on her butt that she has had off and on for about a year and a half--sometimes itchy, sometimes not. Her ped. has put her on antibiotics which didn't work...then we tried two different antibiotic creams...then a yeast-cream...all to no avail. It comes and goes--it's always somewhat present, but sometimes looks way worse than others. --explosive temper tantrums every few weeks --this summer she has complained off and on of hip/leg pain, though not for awhile --recurrent abdominal pain, she now complains at least once a day. She particularly complains of pain AFTER pooping. --descreased appetitite the last couple weeks After the last 6 weeks of persistent, but subtle, abdominal pain, her ped. finally said it was time to see a pediatric gastro. The gastro was excellent, very thorough. I feel like an IDIOT! I had no idea the rash on her butt could be connected to celiac disease. But when the dr. saw it, she called in a 2nd dr to take a look. They took a swab, and said it *looks* like DH...but they were surprised that it doesn't itch something awful. It really doesn't...mostly, at night, Hadley will itch, but hardly ever during the day, it never seems to bother her much at all. She wears pull-ups still at night, and I always just assumed it was some sort of irritation from a wet pull-up. Anyway, they did bloodwork and did the special test for celiac. I got her preliminary blood test results back (thyroid, CBC,C-diff test) and that was all normal. The celiac test had to be sent out and can take up to a week to get back...so I am expecting results Mon or Tues. Do any of you have any thoughts? Is it normal for celiac disease symptoms to worsen over time....the last 6-8 weeks, hers certainly have. Part of me is hoping it is celiac disease...just because I would like to have an ANSWER as to what is going on with her...but the other part of me does not want her to have to struggle with okay foods to eat for the rest of her life.