Refractory or super sensitive?

[Bindi]

I was first diagnosed with celiac disease nearly 14 months ago, going gluten free has made no difference for me and have now also lost 20kg. Had biopsies 3 months ago, showed ongoing damage, increased lymphocytes, villous atrophy and chronic inflammation. Repeat bloodwork I've been told doesn't look good although I've not been told what that means and the biopsies are being rechecked for refractory sprue and I've also been called in for a contrast ct scan. Hubby left back in Feb so I'm on my own with my daughter an struggling working through this journey on my own. I guess I was hoping to hear from any of you who have a similar story to mine, id love to hear how you are doing and what has helped you?

[cristiana]

Hello @Bindi

Welcome to the forum!

I wonder if you have come across this post on the forum?  Do have a read of it.

I struggled for quite a long time with ongoing symptoms and I remember seeing a lot about the Fasano diet when I first joined the forum.   I never actually adopted it, but it was on my 'to do' list had my issues continued longer term, as it seems a lot of people are greatly helped by it.  I would definitely give it try.

Does your diet contain oats still?  You may find cutting them out completely out of your diet could help (and that means even the 'pure', certified gluten free ones).    Some coeliacs react to oat protein just in the same way they do to gluten.   Also, and I can't find it now, I remember reading a story on this forum of a child not recovering until dairy was dropped from the diet, and then recovered.   Perhaps something else to try, in the short term?

Out of interest, are  you doing the usual things like not sharing butter and toasters?  Are any shared cooking utensils well washed, rinsed and squeaky clean when you use them?  Have you checked supplements and medication for gluten - I was really poorly for some time, then realised I was taking Floradix instead of Floravital iron supplement - the former has gluten in it.

Lastly, are you eating out much?  This can be a huge stumbling block to recovery.  Sadly, despite caterers' best efforts, it is still all too easy for harried service staff and chefs to make mistakes.  Only this summer I was offered a gluten-free ploughman's lunch, which comes with a huge hunk of French bread.  I thought the bread looked suspiciously 'normal' and thank goodness I checked.  Other times I've been given gluten-free pasta cooked in normal pasta water, and even a salad chopped up on a breadboard, that had crumbs in it.

Perhaps some things to consider. 

Cristiana

Edited 10 hours ago by cristiana

[Bindi]

Thank you, no I don't eat anything unless I've prepared it myself. Have my own toaster, condiments and oven racks/trays and I certainly don't have oats of any description and nothing i take contains gluten.

This Fasano diet might be worth looking into tho, and perhaps the dropping of dairy, thankyou 

[cristiana]

I think I'd give it a try, it does seem that it helps a lot of people.  

Do let us know if you want anymore advice, and how you get on.

[Raquel2021]

On 10/16/2024 at 2:01 PM, Scott Adams said:

Many McCormick spices are labeled gluten-free:

https://www.mccormick.com/search?q=gluten-free

Here is their allergen statement:

 

 

10 hours ago, Bindi said:

I was first diagnosed with celiac disease nearly 14 months ago, going gluten free has made no difference for me and have now also lost 20kg. Had biopsies 3 months ago, showed ongoing damage, increased lymphocytes, villous atrophy and chronic inflammation. Repeat bloodwork I've been told doesn't look good although I've not been told what that means and the biopsies are being rechecked for refractory sprue and I've also been called in for a contrast ct scan. Hubby left back in Feb so I'm on my own with my daughter an struggling working through this journey on my own. I guess I was hoping to hear from any of you who have a similar story to mine, id love to hear how you are doing and what has helped you?

Let us know how it goes. I am almost on thr same boat. The only difference is my celiac antibodies are normal now but recent biopcies showed blunted villi. I am still having a lot of symptoms and cannot put weight on. Have lost a total of 18 pounds after diagnosis.