SoBannaz

No I was 19 when I was diagnosed. And before then I brought my own lunch (usually a sandwich) which I would throw up an hour later. I wish we figured it out sooner. My folks thought I had an eating disorder and was purposely making myself sick.  With the way things are going wouldn’t be surprised if people think a kid with celiac disease is just attention seeking. Had a nurse try to get me to eat sourdough bread one time to cure my celiac disease but I’m going a bit off topic. If I had a child that inherited my celiac disease I would make all their lunches I worked in restaurants and cafeterias before they aren’t safe too much cross contamination 

No I use canola oil all the time never had a problem (yet) my body is so crazy who knows. But yes I can use canola oil and olive oil. I stay away from vegetable oil because of the soy, soy makes my throat tight it’s the reason I no longer eat chicken unless it’s from krogers because I noticed it made my throat tight looked up on their website majority of those chicken companies feed their chickens soy. The only brand I can tolerate is the one in Kroger’s Simple Truth. 

Before Covid I was able to eat eggs and dairy. After Covid now my mouth gets itchy and I have stomach pain. I would give almost anything for a cheese omelette god I miss cheese. Violife is okay but I think the corn ingredients messed me up. I know I’m not allergic to coconut as I was tested for that… I don’t know any more it was hard enough being gluten free but developing all these weird intolerances that aren’t even taking seriously has left me exhausted. I live off of rice.

On 10/26/2024 at 12:10 PM, cristiana said:

@SoBannaz

Have you ever been offered any sort of topical treatment for your skin?

I occasionally have issues with my skin and during one of the lockdowns in the UK the itching was driving me up the wall - it was in my scalp, on my chest, shoulders, across the stomach.  I was really stressed and worried about it.  At his request, I sent a photo to my GP.  He happens to have a special interest in dermatology, and he came back with the diagnosis that I had eczema.  I was quite skeptical as when I think of eczema, I think of children with it on their elbows, knees and hands.  Also, I never had it as a child.

He told me to buy something called Adex Gel which is an emollient cream with an added anti-inflammatory, and also prescribed me Betnovate cream, a steroid cream.  I was to take a bath in the morning, then put on the gel, then 20 minutes the Betnovate cream, thinly.  Then apply the creams again before bed, in the same order.  

As I say, I was skeptical, but it was an absolute game changer.  

At the time I was eating a lot of almonds and I think that could have been the cause.  At the moment I have it, too, this time it could be because I've been eating a lot of pure oats.  I think I can tolerate a small amount but can't over do it.   Or it could be our new washing powder, and I've been using a lot of hand gel because I've been trying not to give the family COVID - without success, as it happens!  It's hard to tie down the cause sometimes.

My gastroenterologist says to me that coeliacs can suffer from itchy skin, not related to dermatitis herpetiformis.   I must be one of them.

I am interested to read that you get relief from hot water.  I have to say that I find hot water actually may feel good at the time, but it can dry the skin and make things worse.

Cristiana

 

 

 

 

 

It’s interesting you mention eczema I had that as a child. Use to get it on my arms and hands . I wasn’t sure if this was the case again, because my skin isn’t flaky, I don’t have a rash like I did in childhood.  But similarity I notice certain foods really triggers the itch. Rice, is a major tigger when I eat rice I end up itching all night long. I can do oats too but it makes my mouth and tongue go numb after eating them. I try to avoid it.  🤔 on the blood work, I haven’t had any done in a while. It’s difficult speaking to doctors at times as they dismiss it as psychological. But I’ll keep pushing for an answer. Thanks to everyone who replied I really appreciate it.

On 10/26/2024 at 11:12 AM, knitty kitty said:

@SoBannaz,

You said your skin looks like you've been burned.  Is it just red or do you have plaques and scales?  Blisters?  Does it get worse in the sun?

It’s kind of like  dark marks all over my arms and legs from scratching the skin off once it scabs over I end up scratching again. I’m trying to see a dermatologist as my primary recommended that I do. Not worse in the sun, but if I excise I get really itchy too. 

Anyone else have family like this? I’ve been gluten free for a little over a decade now. I was diagnosed as a teenager through a gastroenterologist.  But I still get eye rolls and scoffs when I say I can’t eat certain things. I get compared to other family who have celiac they say “but so and so eats this and they have celiac.” Same with my nut allergies (which has been confirmed by an allergist)  my mother “had” nut allergies growing up and a plethora of other food allergies she tells me I need to eat what I’m allergic to and that it will go away. Even just interacting day to day. It is such a social thing to eat whether it be at work or at home. I feel like my coworkers think I’m being difficult when I don’t indulged.  I have people constantly trying to get me to eat things I know will make me sick. No matter how many times I explain it. Me doing what’s healthy for me seems to bother other people for some reason. 

I know this super old, but I’ve been having this problem on and off for a few years now but it’s gotten worse. I haven’t eaten gluten in 10 years. I don’t eat dairy, soy, potatoes, rice sesame, or use any kind of spices on my food yet I still get a full body itch. I had allergy testing done all they found were a couple of tree nut allergies nothing else. The doctor pretty much brushed me off and told me everything looks fine. My skin looks like I’ve been burned. I can’t sleep I wake up scratching scratching it’s driving me crazy. Only time it goes away is after a long hot shower. And that’s temporary relief. I’m starting to think I’m coming in contact with something but even with my clothes I use a dye free detergent.  I’m seeing a dermatologist next year so I am really hoping they listen to me and don’t tell me I’m “young” and “healthy” when I’m literally scratching my skin off