Momto2girls
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Latest Celiac Disease News & Research:
Everything posted by Momto2girls
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ARCHIVED Would You Pursue Celiac Testing?
Momto2girls posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I recently had the Alletess food sensitivity panel done. I was expecting to see more dairy food reactions, but instead I tested positive for gluten, yeast, barley, wheat, rye, and barley. My highest were the yeast and wheat. I wasn't surprised that one or two of these things would pop up, but all of them? I know I need to do an elimination diet, but I... -
ARCHIVED Is This Celiac Or Ibd?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Hi everyone! Well, back to GI doc today and he still seems to think that the Celiac diagnoses is the most likely, and he wants to re-do the Celiac panel. It has only been 4 months since we last did the bloodwork -- but he said that's long enough for something to change. He said 4 years old seems to be the borderline age for most kids -- where they've been... -
ARCHIVED Is This Celiac Or Ibd?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Thanks, it is discouraging. I am thinking they only keep kids on the meds if absolutely necessary and hat would only be with a definitive diagnosis of Crohn's. (I say Crohn's b/c apparently inflammation in the ileum is Crohn's rather than Colitis). So I think he'd rather see she's having difficulty without the meds and re-scope than to just go back on the... -
ARCHIVED Is This Celiac Or Ibd?
Momto2girls posted a topic in Parents, Friends and Loved Ones of Celiacs
My DD is 4 and has had GI issues for a long time -- everything from constipation to impaction with diarrhea and tummy aches, reflux and overactive bladder due to constipation. In April the did bloodwork for Celiac which came back normal. But at that point she was getting constipated to the point of impaction within 2 weeks -- we'd do a cleanout -- and boom... -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
Nope -- it is the best way to do a clean out -- we've done it several times, and it looks like we're impacted again and will be facing another clean out. But we've been on miralax for close to 2 years and now I want to get to the bottom of the problem so that we can get this all straightened out, and get off of it! It is so frustrating! -
ARCHIVED Is It Possible To Notice A Difference In 24 Hours?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Wow -- I am enjoying it, for sure! This is amazing!! Now, she's up (again) in the middle-of-the-night-very-early-morning, but instead of crying and saying her tummy hurts, she came in saying she was hungry!? Don't tell me this is a result of gluten-free, too!? I am kind of STUNNED. My best friend is Celiac and she said it took months for her to feel better... -
ARCHIVED Is It Possible To Notice A Difference In 24 Hours?
Momto2girls posted a topic in Parents, Friends and Loved Ones of Celiacs
So, yesterday I decided it was just time! (Thanks so the encouragement here!) And so I went to the store and starting from dinner on my 4 year old (and me!) have been gluten-free. She has been SOOOO sick lately...I mean, I have been seriously worried about her (aside from her being a mess digestively and having inflammation on a recent scope), she also has... -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
I am wondering the same. How much miralax is he taking? And has he had any constipation since going gluten-free? Could you try going down on the dose for a few days and see what happens? -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
Oh wow -- good to know. We are working with a ped GI but we are still having issues. In fact, I am pretty sure we are going to have to get another x-ray today. Luckily we haven't let the problem go for long without a cleanout, but it does take 6 capfuls of miralax a day for 2 days to get her cleaned out and we end up doing this every 2 weeks. This is with... -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
Oh gosh, I am so sorry to hear that! I sure hope you can find an answer. Is it Celiac? Crohn's? Both? My DD has inflammation of the ileum and left colon but apparently it doesn't look like Crohn's? -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
Oh wow -- that's amazing! We are having the same thing - impactions with diarrhea around -- we are on miralax AND 2 senna laxatives a day -- and now we're on sulfasalazine, too, for GI inflammation. And even still she's impacted again within 2 weeks of a clean out -- so we have to do 6 capfuls of miralax for 2 days in a row in order to clean her out again... -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
OK great -- she LOVES rice, and potatoes, too. In fact, we can probably make this work! We do have her off of milk (as far as drinking, not baked in), and yogurt and even mostly off of cheese. She has liked black beans in the past but has gotten pickier recently. Though she really loves edamame. Finger food sound fun. Maybe we can actually do this!? When... -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Yes, exactly. That's more what I meant rather than needing a her permission. I do think it is time to try this as the allergist is ready to look for more "traditional" allergies that are causing this, but if we find that gluten is the culprit we won't have to do that testing, either, ya know? OK, now what to feed a picky preschooler who has a nut allergy... -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
OK, sounds good! I have to say as a mom of a young child going gluten-free has always hugely intimidated me, but I know as far as a medical issue, Celiac would be the better diagnosis, as it is all controlled with diet and not all of these awful meds and surgeries! So I am kinda hoping that's what we'll find. And I'll learn to eat without gluten just like... -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
I do have a call into the GI doctor but they are slow as molasses, so I am wondering if you know how long we should give the sulfasalazine to kick in? I know the GI wanted her on it for a month, but I am guessing we'd see some sort of positive results sooner than that? It has been almost 2 weeks now (on Thur). It has been 2 weeks since her last clean out... -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
This is interesting -- there was no blunting on our biopsy, though. But the GI said she just didn't *think* it looked like inflammation from Crohn's -- although it could be a precursor? But, what she did say was that she expected to see something allergy-related (as my daughter already has severe food allergies and some sensitivities) and she was "thrown... -
ARCHIVED Pediatric Use Of Miralax
Momto2girls replied to seezee's topic in Parents, Friends and Loved Ones of Celiacs
I saw this, too. We are using LOTS of miralax. Can I ask you if your daughter had a lot of constipation with Celiac? My daughter gets constipated to the point of impaction and having diarrhea and it is so frustrating! -
ARCHIVED Endoscopy/colonoscopy Results Are In
Momto2girls posted a topic in Parents, Friends and Loved Ones of Celiacs
Hi everyone! My 4 year old daughter had her scope 2 weeks ago, and they said it wasn't Celiac. They did find mild inflammation in the ileum and left colon, as well as gastritis and Rare H. Pylori in the stomach. The GI doctor put her on Sulfasalazine, which is typically for IBD, but she said she does NOT think it is Crohn's? She really doesn't know what the... -
ARCHIVED My Daughter's Scope Was This Morning
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
It just makes me a little nutty -- like if it were just one thing they were testing for I could sort of sit still and wait but since it is a million things I am totally losing it and need to know!! But I just have to be patient. I am horrible at this. Have I mentioned that!? We haven't had the test for the gene, nor have we even had the full blood panel... -
ARCHIVED My Daughter's Scope Was This Morning
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Thanks SO much everyone!! Her blood work was actually negative. But, they didn't do the full celiac panel -- they only tested for a few things -- and it was "barely" negative (if that's possible?) -- meaning it was just within the normal range. But, they are looking for everything -- EoE, Celiac, Crohn's, etc. And they said that we should trial milk-free... -
ARCHIVED My Daughter's Scope Was This Morning
Momto2girls posted a topic in Parents, Friends and Loved Ones of Celiacs
Ha, ha! I hate waiting -- I am SO impatient!! So the GI who did the scope wasn't our GI -- he was a doctor from the same group. So he didn't say anything except everything looked OK ad now we just have to wait on biopsy results. I am wondering how many of your kids looked normal but then the biopsy turned up positive? Or how that happened? My DD is 4. ... -
ARCHIVED Blood Work Negative...but Not By Much...
Momto2girls posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
My daughter just turned 4 in March. We've had GI issues since she was 2.5. In Aug. her ped tested her Transglutiminase IgA, and it was only .6 (reference range <4). This month we started with a ped GI specialist and she ran the same test again and now she's 3.72. (still ref range <4). So it is still within normal. (And her total IgA appears to be normal... -
ARCHIVED Help With Test Results!?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
So they still haven't called, but I did find the full lab results from Aug (done by her ped, not by the GI) and the ref range for Transglutiminase IgA seems to be <4. So would 3.72 be a red flag, even though it is still normal? Or is it one of those things that a positive number is usually way higher than 4? I just hate to scope unnecessarily. In 7 months... -
ARCHIVED Help With Test Results!?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
Thanks so much Cara -- this is very helpful. I guess they wanted to see if we could get her "straightened out" in the next couple of months, and we wouldn't have to scope? But we've had extensive GI issues...that started 18 months ago, with over active bladder and bladder spasms due to constipation and food dye intolerance. She's very food sensitive and... -
ARCHIVED Help With Test Results!?
Momto2girls replied to Momto2girls's topic in Parents, Friends and Loved Ones of Celiacs
The test was done at the children's hospital she was seen at. I've put a call into GI this morning to see if they can help me clarify. Hopefully I'll hear back today!