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notkuroda

Member Since 15 Dec 2009
Offline Last Active Jun 05 2013 11:46 AM
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Topics I've Started

Carageenan!

05 June 2013 - 09:20 AM

Hi all,

 

Haven't been to the forum in awhile, but some of you might remember my complete meltdown over my wife's constant contamination. Long story short, she had DH flareups for months, was completely exhausted, depressed, digestive issues, the whole 9. We did everything we could to make sure she wasn't getting contaminated, but this continued for months.

 

Finally I found a post somewhere on this board about Carageenan. After doing some research we found that it can cause Celiac symptoms in some patients. So we cut it out completely, amazing how many "gluten free" foods had this ingredient.

 

Happy to report, she hasn't had a flareup or any celiac symptoms since then. So I wanted to first of all say thank you for all the help and support, and second of all bring this to the top of the board in case others weren't aware. I hope it helps someone the way it helped her.


Celiac Wife, Don't Know How Else To Help

06 February 2013 - 09:33 AM

Hi all. I've been posting in the regular forum but thought I should start posting here since I don't suffer from this disease the way most people on the forum do. But man, this is starting to get hard.

My wife was diagnosed Celiac a little over 3 years ago. We've constantly read and researched as much as we can about the disease. In November of last year she started getting DH inflammations. Generally, when she gets contaminated, she has a few days of digestive problems followed by DH. Generally, her DH clears up about 7-10 days after the initial contamination. I know this sounds minor to the horror stories I've been reading on here but it is what it is. So back to my story. There are times that the DH contamination is not accompanied by any digestive issues, but it is a red flag that she got something in her system. Anyway, come to find out that Synthroid, the thyroid drug she's been taking all of her life, is no longer gluten free. So she switches meds, DH clears up, she feels better in a week. She goes on vacation, and when she gets back, she gets another flareup.

The flareups have been coming on and off ever since late December. It starts to get cleared up, then she gets it again. We've taken out dairy, soy, any processed foods. She's basically eating fruit, veggies, rice, and eggs, taking vitamins and her medication and yet as of this morning she has had 3 straight days of digestive problems followed by increased DH. There's no gluten in the house. I've even given up beer(mmmmmmm beeeeeeer) which was the last gluten holdout we had in the house. But I don't want to take any chances. We've washed bedsheets, done a deep cleaning, called companies, can't think of anything else we can do. I don't kiss her unless I've thoroughly sterilized my mouth.

This constant contamination(if that's really what it is) leaves her sick with no energy. She struggles to keep her eyes open. When she can do it, she can't concentrate. She's missed a few weeks of work through this time period. She had been prescribed adderall to help her function, she doesn't take that anymore either due to contamination fears. She's horribly depressed and has told me she's had suicidal thoughts. She emailed this to the mayo clinic a few days ago and they called her to check and make sure she was ok.

I know many of you get contaminated and the effects last weeks or even months. She's lucky in that that doesn't happen to her, but she keeps going through these cycles of getting better/ getting worse.

Its getting harder just for me to keep it together, much less her. I started taking antidepressants about 2 months ago, and it's helped me a lot. But everytime she gets a new contamination, I feel so defeated. I'm like her nurse at this point, I'm the one who constantly remind her that her health is the most important thing, no matter the cost. But I really can't even think of any possible way she could be getting contaminated. So I'm as depressed as I've been since starting the medication. I started taking it because I'd break down in tears at work and have to leave early. That's where I am today.

It just feels like after doing the diet for years and learning more and more about the disease, she's in the same place that she was before she got diagnosed. At that point, she was literally a few feet from suicide.

I'm scared and very alone right now. Friends really don't understand what this is like. My parents keep getting on my case because they think there must be a doctor or medication somewhere who can solve these problems. They don't get that it doesn't work that way

I'm open to any thoughts or suggestions you may have

Gluten Free Nuts?

01 February 2013 - 06:10 AM

Hi all. My wife has been getting constantly contaminated for about 2 months. She gets over one glutening, and another sneaks up. We really don't know what's causing it. So she's going to go on a raw food diet for awhile. My concern is that she needs protein, so she needs to eat a lot of nuts and seeds. We've really had a problem finding anything in that area that's gluten free. Any recommendations? I mean 100%, 0 ppm, no gluten at all. She is SUPER sensitive. Or if you have any recs for other ways to get protein besides meat and eggs, I'd appreciate that as well.

Thank you

Progresso-Be Careful

23 January 2013 - 06:10 AM

Fyi, my wife was contaminated last night after eating Progresso cream of mushroom soup. It's labled gluten free, but there are progresso's that are NOT gluten free so they may be processed in the same place. Mind you, she's super sensitive. Just wanted to get the warning out there

Environmental Glutening?

11 January 2013 - 10:48 AM

Hi all, as you may have seen from the mysterious glutening thread, my wife is getting glutened and we don't know what it is. I'm honestly at the point where I want to get her out of the house and take her to a hotel for a couple of days, just in case there's some gluten hanging around the house that we don't know about. Is this crazy? We just don't know what's going on