When There Is Total & Complete Villi Destruction

[CMWeaver]

Hi there,

I'm posting this here since for me....it is more of a coping issue.

My daughters are 4 (fraternal twins). One had no symptoms but positive labs, the other had the classic symptoms which led us to a GI. Long story short, her pathology report in December said total and complete destruction of the intestinal villi. I admit, I knew there were different stages of partial destruction and didn't realize that a little girl just turning 4 could be so "bad off".

So, here we are a family of 4 with two kids on a gluten-free diet. We're in Jacksonville, FL so there are good stores available to us with good reliable products for them. Despite the fact that the grocery bill has increased $300 each month, they are completely gluten-free, no cheating. We've bought new collenders, frying pans, cooking utensils etc. Needless to say, I've been very thorough about the products they eat or the ones they are around (bath and hygiene, markers, etc.)

However, despite the best of my efforts, I noticed Dina would still have a BM at least once a week that was "off". Meaning, most were softly formed but once in a while one would be like mush. I've called the GI nurses, talked to others and was told how it takes time to heal etc. She's gained 5.5 lbs in 4 months so they weren't concerned. Recently, I'm noticing symptoms like she used to have......abnormal sweating (heat intolerance), more frequent BM that appear to be....how can I say it.....like wet mud with no form to them. I've kept a food diary with a side note as to when the BM were made. For a while now and I don't see anything that stands out. She complains here and there with a sore belly. She's been sick on and off (preschoolers....they bring it home.....we all get it). Double ear infections, high fever, etc. The ER doc (fever reached 105) for a good part of the day yesterday. He blamed the Gi issues on possible vertigo. While this could be true, I was wondering if you....since perhaps more knowledgeable than I, could shed some light on the healing process. I can understand ups and downs during the healing process but was just wondering what you all thought of this.

Sorry for the length. Thanks in advance! This board has been awesome!

Christine

(Dina and Elena too)

[KaitiUSA]

You mentioned preschool in your post...is there something there she is eating...or something with gluten like playdoh she is playing with?

Also there could be another food that is a problem. If she is still healing milk may be a problem.

Good luck

[angel-jd1]

Do they go out of your home for preschool? If so she could be getting small amounts of gluten there. Children of that age are very "sharing". Here, have a cookie,cracker, etc. It can easily slip by a teacher or aide.

As Kati mentioned, playdough could also be a culprit. Even if she isn't directly playing with it, tables may not be washed properly, they could be the same tables they serve snacks and lunches on.

Even craft time can be trickey, macaroni noodles, cereals, some of the paints and glues are even filled with gluten. You just have to check brands.

Just some things to think about.

-Jessica

[Lesliean]

My heart goes out to you. At that age it must be so hard to check everything they touch and eat. At school I hope the teachers can be vigilant too about the food and reporting to you things they touch at school so you can check. Here is info on playdough:

Open Original Shared Link

And more on paints and Crayola products:

https://www.celiac.com/st_prod.html?p_prodid=276

Even the kids eating and then playing could be spreading crumbs. Hopefully the teachers would be willing to have the children wash up before and AFTER snack time.

I rely on corn tortillas, rice, gluten-free corn chips, potatoes, sweet potatoes, polenta with cranberries (rough corn meal cooked like oatmeal), avocatoes, squash, beans, and nuts. I'm told I'm a weird eater though!.

It really does get easier as time goes on.

Leslie