Not Formally Diagnosed And Wondering

[Wakingup]

I have not been formally diagnosed with celiac or gluten sensitivity. I stopped eating gluten about three years ago and the stomach bloating and gas have stopped. We eat out about 2 times a year....on Sunday we ate out and I ordered a chocolate dessert that contained gluten (knowingly). My mind is my worst enemy. It told me, why mot try, maybe you are not sensitive to gluten after all. I was fine for the first hour. Then later gas and bloating......which was uncomfortable but nothing compared to the emotional symptoms that last through the night and all day yesterday. I was extremely anxious, bordering on panic, and so depressed that I wanted to kill myself. I am doing much better today.....still some gas but mainly emotional symptoms have lifted. My husband eats a lot of breads, crackers, etc.

So we have gluten in the kitchen. I am wondering if that could be affecting me also. I suffer from anxiety and depression, also brain fog.....anger easily, cry easily. Nothing like the desperate feelings I suffered yesterday, but nonetheless, those feelings are there. I think that if I had been diagnosed with celiac disease I'd be more vigilant about the kitchen. Like right now there are bagels sitting on the counter. I will not be tested bc I can never go back to eating gluten. I'd end up dead.

Any thoughts?

[BlessedMommy]

If you can't be tested but have serious issues with gluten, then you need to stay 100% gluten free including cross contamination. Being 95% gluten free won't help you if you have undiagnosed celiac. 

 

I cannot go back to eating gluten either (serious neurological problems from gluten, 3 months of gluten would likely cause a stroke) and so I just go through life assuming I'm probably celiac and planning my diet to that end. I don't use shared toasters, old waffle irons, old wooden spoons, old baking pans, etc. I got rid of my old pans, etc. and cleaned my kitchen out. If my children eat bread on occasion at home, I try to plan it at a time when I can give them a bath afterwards and change their clothes. At restaurants, the plan is to wash hands and faces after eating.

If I'm preparing a gluteny meal for others (like when I'm babysitting my friend's kids), I make my meal in segregation and eat it first, so that I don't have to worry about serving the kids their tortillas while I'm eating my gluten free food. I eat out sparingly and usually only at places that have a formal gluten free program for their food or for food that's hard to mess up in the first place. (like a baked potato still in it's foil or a smoothie)

 

It's hard but doable.

 

And you know what the great thing is? Ever since I really became strict on my diet, my remaining pesky symptoms that I assumed I was stuck with for life, started to dissipate. I have an anxiety disorder and I have seen probably about 80% improvement on that.

 

You can do it!

[Wakingup]

Thanks blessed momma,

Do you think that even a trace of gluten can cause emotional upset? So if my husband eats cookies, crackers, bread, etc., I shouldn't touch him until he changes clothes and bathes? I was on ssri medicine for,many years.....did a very slow wean off and have been ssri free for two years. I have read that the emotional aftermath of ssri use can last for years so I don't know what is gluten related and what is withdrawl related. I am easily triggered by perceived slights....I don't act out but can feel sad for days if I feel I'm being judged for example. Also very easily overwhelmed by small things......getting worse as I age......maybe not age but gluten? Also my brain can not figure things out llike I used to.....brain fog really bad with math, like doing taxes. Do you think these symptoms can be from gluten on my husband and in the kitchen? We are seniors.....no kids or grandkids.

[BlessedMommy]

Kissing your husband after he's eaten gluten can definitely gluten you. If my husband eats gluten, he knows that means he has to brush his teeth before kissing.

I'm careful with the little kids too. I give them their goodnight kiss on their forehead instead of their cheeks if they've eaten gluten recently.

[nvsmom]

You could be getting glutened at home. It's hard to say.  Most celiacs find it much easier and safer to have a gluten-free home, but many celiacs live safely with gluten in the home; you just need to be careful.

 

The DGP IgA and DGP IgG (deaminated gliadin peptides) are tests that can be used to test for gluten-free dietary compliance.  These tests tend to switch to positive more quickly after you were exposed to gluten in some individuals.  If it is positive it means you've been getting glutened here or there.

 

 The tTG IgA and tTG IgG (tissue transglutaminase) can be used too, but they are slower to rise and fall, so they can stay elevated (in some people) for many month even if one is gluten-free.   If you had a positive tTG test now, I would interpret it to mean that you have been getting glutened over a long period of time.

 

Hope you feel better soon.

[cyclinglady]

I think Blessed Momma bathes her little ones after they consume gluten is because they are sloppy eaters -- just babies! Her husband does not have to bathe, but he does have to brush his teeth!

Yes, just a tiny bit (like in medications or crumbs from a shared toaster, or crumbs in a sponge) can set off an autoimmune response.

I think you should read our Newbie 101 tips to insure total compliance! Here is the link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Here is my story, I was diagnosed with celiac disease two years ago. Hubby went gluten-free per the poor advice of his GP and my allergist. He has been gluten-free for over 13 years. We had a shared kitchen for many years . I was careful not to gluten him but it was hard. He did get glutened eating out. Then I got my diagnosis and we went totally gluten free, meaning no gluten in the house even on holidays! I knew I had been careful, but my kid was learning her way around the kitchen and you know kids! She gets her gluten fix at school and at her friends. When I was eating gluten, I did not eat it in front of my husband. I always made gluten-free dinners for him.

Here is my Aunt's story. She went gluten-free per the advice of her chiropractor. She found relief in her symptoms. But living with a gluten eater and cooking for her adult kids and grandchildren was glutening her all the time. She went 100% gluten free after going to a few celiac meetings in her town and after I was diagnosed. Now, her daughter is gluten-free too. She had an endoscopy, but no biopies were done! Ugh! We assume that they both have celiac disease. Now we are smart enough to get testing for the rest of the family before going gluten-free. It makes it easier to comply with the diet and my hubby is the first to say that I get a lot more support from medical, family and friends!

I wish you well!

[julissa]

Blessed Mommy, you brought a smile to my face saying you kiss your kids on the top of their head.

 

I pick my grandkids up from school every Monday, and usually leave while they're eating dinner. very gluteny stuff. so when I am getting ready to go, one will usually say to the other, "grandma's coming to kiss your head goodbye".