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Member Since 16 Jan 2014
Offline Last Active Nov 04 2014 04:53 AM

Posts I've Made

In Topic: Refractory Celiac Disease

11 September 2014 - 01:33 PM

My first doctor started throwing around the refractory diagnosis possibility very early too because I actually got much worse on the gluten-free diet (I have been dairy free for many years before I even knew what celiac was), but I switched hospitals to U of Chicago and we finally figured out that I have fructose intolerance (malabsorbtion in the proper term I believe). I have had to cut out ALL fruit, the fructans group, and sweeteners. I pretty much only eat meat, potatoes, rice and corn very occasionally, and the non-fructan veggies. That has drastically helped my circumstances.Try a low fodmap diet with the slow reintroduction it may help. I also second getting checked for SIBO or just treating it if your doctor thinks that's ok. I tried treating the SIBO it wasn't my problem but it helped me know that was not a concern at the time.

In Topic: Did Your Vitamin D Levels Go Up?

08 July 2014 - 03:40 PM

Yes, for unknown reasons pre-diagnosis my Vit D levels were a bit high at 79 (I did not take any supplements and was not eating dairy so we chalked it up to being outside a lot and being very fair) now I'm nearly 90 and they've asked me to cut back on my new multivitamin, even though I'm low on other things, to prevent it from getting dangerous.

In Topic: Gluten Free 5 Weeks Some Symptoms Getting Worse

08 July 2014 - 03:27 PM

This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.

In Topic: Preschool Mother's Day Craft Made Me Cry...

13 May 2014 - 06:19 AM

Sorry I didn't reply earlier I've been busy. My fiance, the twins's dad, went to talk to them when he dropped them off and they really felt bad about it and apologized he told them it's not the end of the world but it's just an uncomfortable situation and so they gave my kids beads to put on the necklaces. They are hanging but the kitchen door to the garage so we can see them every time we come home. They also had all of the kids plant marigolds and make cards super cute. I am no gardener I could kill a fake plant so I hope I don't ruin the marigolds!


ETA: Just FYI I did say in the original post I knew skin contact can't cause a reaction but I react when this sort of this just touches my lips and putting it on and taking it off puts it very near my lips so of course I didn't plan on "sucking on a necklace" but I'm extremely sensitive and react to contact on the lips even if I try to wash my mouth with antibacterial soap immediately...

In Topic: Sometimes People Say Such Stupid Things The Only Way To Handle It Is To Laugh...

04 May 2014 - 05:40 PM

I am not sure how I didn't start cracking up right there but yeah scary how little people know about the things they are putting into their bodies. I am really getting good at not laughing in people's faces now a days!

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