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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

Boys mom

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  1. HI- My sons GI doctor wants them to have lab work after getting an accidental gluten exposure to see if there is a "blip" in their blood levels (they have been wheat/gluten free among other foods for 4-6 months now aside from any accidental exposures.) We just confirmed they carry the celiac genes (one son 1 and the other both). Their diets are restricted of wheat and a million other foods that are also hard for them to digest--still--so I know their guts aren't "healed" all the way yet. (of course not 100% sure wheat/gluten is our issue, either.) Has anyone seen diagnosis from an accidental gluten exposure? We are in the camp that we really want an official diagnosis for a whole host of reasons, but aren't wanting to go the route of exposing our 1 & 3 year olds to wheat for weeks on end if we don't have to. I've never heard of a 1-day exposure really getting anyone far so curious what my doc could be thinking/looking for. Thanks!
  2. I am still in the process of diagnosing my sons but I related to EVERYTHING you wrote from breastfeeding/milk intolerant newborn to current behavior problems in a 2+ year old. (I know how exhausted you are...and my husband doesn't deploy! Hats off to you!!) I'm sure your gut instinct is razor sharp and you are such a good mom for not settling for the first answer you received and continuing to advocate for your child. BULLDOZE through tricare if you have to---you may need a referral to a pediatric GI specialist for the right help. Continue to advocate as loudly as you can. We are prior military, so I highly suggest you continue to push for the right diagnosis for your son (before you just take him off of wheat to test if it helps his symptoms) as there will be financial support through tricare for whatever the solution you find actually is. For instance, my son's diet is supplemented with Neocate Splash (a fortified juice) and tricare does reimburse the cost of some of this with the right diagnosis/documentation. Hang in there and GOOD JOB MAMA!!!!!!
  3. Thanks Miss Mellie! Yes, I read the dyes were used to analyze the biopsy too. Sorry I wasn't clear on that. So, do you think I could call and request that they use the dye? I guess it never hurts to ask.
  4. Thank you SO much! Seriously brought tears to my eyes; I probably shouldn't need your pep talk but I totally did. Thank you!
  5. Thank you!! I thougth it was wheat so great to know it's corn (which is also already out of our diets b/c my boys were reacting to whole corn, syrup, etc.) Didn't realize it was part of that family! Thanks!
  6. I know--the GI didn't want me to put him back on a wheat diet. I probably have a false hope that they could still see some of the damage leftover. They are checking a couple other things w his scope (enzymes and signs of reflux) but my guess is that those will check out fine and then we will have to talk about doing another endoscopy paired with a long food challenge. I'm grasping at anything to try to avoid that. I keep reading different info on it. I see that it's gluten free (lots of resources on this website) yet have found others saying its cross contaminated at some point. Since my son reacts to it, I had just assumed the latter...... Wonder what else in xanthan gum could be causing him trouble? Any idea why many people with celiac disease or gluten sensitivity react to it? Thanks!
  7. My son had a scope/biopsies today and I just read something about using a die to better project the villi in the lab to get an accurate count. Is this familiar to anyone and do you think I can call on Monday and request the die or do you think that puts me on crazy-mom status and it's too late? My son has been off wheat/gluten for weeks now (except for xanthan gum, which he reacts to, in his toothpaste, which he tries his best to swallow ;-)) Anyway, my gut is celiac but from everything I've read about diagnosing in kids, it's really hard once their bodies start to repair. Unfortunatelyl for me, my gut instinct no matter how obviously backed by food elimination diet isn't good enough for some of my family members that my son comes in contact with (That's a whole other convo!) --I'm sure we all feel like a clear answer would make things much more simple!
  8. Thank you Both SO much for your replies! Since I last posted, the older son has totally avoided gluten free oats so those are also "out." Your comment above reinforces me on that--thanks! As for the outside-the-box suggestions, thanks very much for your straight up candor! We ended up having an endoscopy done on the older child and are still waiting on results (I'm not optimistic for anything concrete because he has been on the elimination diet for weeks.) ALthough my gut is saying wheat/gluten is the main issue, I should definitely look into your other suggestions as its only fair to attack my house with the same intensity as my poor kiddos are being attacked! Thanks! I'm so appreciative of this resource!
  9. I'm attempting to ask my questions without giving my whole story....we'll see if I can keep this short! I am SO appreciative of your time and advice! The backstory is diarrhea leading to weight loss (reflux, chronic colds, toddler complaining of eye pain...and a bunch of other things all my doctors want to call unrelated.) 1. My just turned 1-yo had a celiac panel run and it came back negative. Prior to the bloodwork, he was wheat free for about 2 weeks, minimal wheat for a few more than that, and I BREASTFEEDING was wheat free almost as long but had a nice sandwich binge at his birthday party 3 days before bloodwork. (no clue if gluten in breastmilk would get into his system) Our GI doc says the blood work is an accurate indicator but I've read so many posts here that say babies guts heal so fast that 2 weeks is too long. Thoughts on reliability of the negative result? 2. My older 2.5 year old had a negative celiac panel (I saw the blood work order checked for "celiac"...I assume it was the whole panel??)? Both boys have shown major diarrhea and behavior changes, crying/gas, etc and both chronic colds and acid reflux since birth. My older hit a downward spiral about 6 months ago and our food elimination diet has become quite extensive and detailed....down to things like Xanthan gum. He is literally eating rice, wheat/gluten free oats, pork/ham, and fruits/veggies but not citrus. The younger seemed to start headed down this path aboutn2 months ago and it clearly started with wheat. My GI doc said that food sensitivities "aren't genetic like a disease per say" but because blood work is normal, just says to continue food elimination diet to manage diarrhea and weight loss. My gut instinct is that they are missing something since this so blatantly looks genetic. Can anyone speak to a moms gut instinct and am I nuts for wanting a biopsy for better answers? 3. Do any of you see with your kids, a downward spiral of taking one food out of their diets only to have another food clearly show as problematic? It's like my 2.5 year old was just cruisingnalongwith really loose stools and then he got horrible diarrhea for a week. as soon as we went dairy free it was SO obvious that wheat was an issue, he lost 3lbs before i figured out what the pronlem was. Took wheat out amd and as soon as wheat was out, BAM corn was bad, from corn to...... My toddler is so good at inspecting his foods and SO reliably consistent at what he avoids. Its so sad! His little nose and eyes are razor sharp at avoiding trigger foods. What I'm wondering is based on any ofmyournexperiences, does this seem like a celiac type thing or not? (and if not, any other ideas besides food intolerance......all I can say is my mother gut instinct is that we haven't found the answer yet with the "intolerance" diagnosis.) 4. Finally, I've read lots in these strands about avoiding biopsies unless you truly want a diagnosis vs already knowing the solution (food elimination diet). I can see both sides----my GI isnt offering a biopsy formeither of my kids because elimination has stabelized their weightnand they dont have blood in theirmstools. I half want to demand it. I'm wondering if anyone can offer words of encouragement or advice on dealing with family (specifically grandparents who live nearby) who don't believe in food intolerance. (I've offered that they come to Dr apts w us and they decline). This is literally tearing my family apart because they don't trust that I am doing what's best for my kids and I don't trust that they wont override doctors orders because they are old-school and think you should force a child to eat and then he will digest anything. (ugh!) Thanks so much!!!