Post # 1
- Wedding: October 2014 - Disney
Last week I posted about my daughter and the fact they were talking about removing all the major allergens. I was super worried. Well today I have some seemingly good news.
This morning my daughter had her EGD they rushed her in. They are now rush ordering her biopsy results because she has visual evidence of celiac in her small intestine! We wont know for sure until the biopsies are back but this is a classic celiac presentation.
Her esophagus looks good we will know more when they check the biopsies for eosinophils. The doctor says he wants the biopsies first but will be calling in the next 3 days and is ready to initiate the gluten free diet. Tears of joy and sadness for my little one.
The doctor believes that all along she has had a gluten issue first creating EoE and now from me she has celiac. They actually have 2-3 other cases in the clinic of this presentation and its one of the best outcomes for EoE children when its gluten driven from celiac. If this is the case both will be put into remission with gluten removal, and we maybe able to remove the acid blockers. They may still have to keep her on or bump the blocker up based on her esophagus biopsies. The hope is however if they are clean they’ll initiate the diet and in the next 6 months remove the blocker then biopsy again. Her sugar issues, and environmental triggors for EoE will still have to be managed but her root cause may be just one food trigger for now 2 diseases :D. We should know for sure by the end of the year but for now it is hopeful with the distruction in her gut we have a solution.
No one wants to give their child a genetic disease like celiac, but when it is a lesser evil to control a condition that can really take a toll on kids I’ll take it. So fingers crossed that what was seen is made official this week and we remove 1 trigger and all is fixed :).
Post # 3
- Wedding: November 2013 - St. Augustine Beach, FL
Thanks for the update. Crossing my fingers for you.
My dog is severely allergic to gluten. I made the mistake of trying a new (supposedly) gluten free food starting two weeks ago. He had a grand mal seizure in bed with us at 7am on Saturday. We cleaned out his system, got rid of the food, and replaced it with his old food. I am starting to think that gluten can’t be good for us either if it gives my dog seizures.
Post # 4
That’s great news!!! Celiac isn’t fun but it’s not as hard as EoE. I’ll keep your daughter in my prayers!
Post # 5
Good news! I feel like coeliac is becoming much better understood lately, and there are more coeliac options available in supermarkets. My mum has it and she can usually find good alternatives to pasta and bread (just toast the bread beforehand, because it tastes like a wet sponge untoasted!)
Post # 6
hi! I just wanted to reply and say I’m so sorry that happened to your dog! However, about the comment re: gluten, you have to keep in mind something that is toxic to one organism isn’t too another. Case in point peanuts aren’t the devil even though sone people may be deathly afraid of it.
I don’t want to make light of what happened, it was awful and it is serious. A gluten free diet is serious and the only treatment for people with a serious disease. However the antagonization of gluten has much to do with marketing and companies jumping on the awareness of celiac and other gluten disorders.
– A dietitian in training
Post # 7
- Wedding: October 2014 - Disney
@JenGirl: She has EoE too they just think she maybe has gluten as her food trigger. She has sugar as a trigger, tree pollen, and grass pollen as well. Due to her carrying the gene for celiac and her own issues it was just a matter of time. They were actually talking about pulling gluten if she was DQ2 positive due to her issues, DQ8 they probably wouldnt have. So if it is celiac as it looks to be they will try just gluten first especially since her esophagus looks good right now, we wont know for sure until they check the biopsy they expect eosinophils under the microscope. Then we will depending on the esophagus scope try to pull the PPI and scope again. Fingers crossed, this isnt the first case in the clinic in the area where they’ve seen this. They have 2-3 others who followed the same pattern.