Introduction And Question-- New Celiac

[hubby71]

Hi. I just got diagnosed with Celiacs. I'm a 40 yr old male with mild lifelong symptoms, which suddenly got worse the last two years. Funny thing is, my wife is Celiac also, although she was diagnosed 15 yrs ago. We are both typical celiacs. Northern Euro descent, all that jazz... Her mother was celiac. My dad was. She's Welsh. I'm Irish. I guess, if you're going to have a disease, might as well have one together!

When I was a teenager, I was misdiagnosed with cushings syndrome because of my fatigue and unexplained weight gain. Gastro problems, and all that. But the testing didn't come out right and the doctors were stumped. Jump forward 25 yrs, and I still had weight and fatigue problems, sores and itching, gastro. Gall bladder died and had to be removed. Doctor said I had cyrrhosis of the liver and demanded that I confess I was an alcoholic... but I don't drink! Hair fell out of my legs. Numbness of extremities and insomnia. It's really ridiculous how long it took to get diagnosed correctly, with all the symptoms. I had just gotten used to being miserable, but when I broke out in lesions, my wife finally said, "I think you're celiac, too!"

She's always been a cheater as far as sticking to her gluten-free diet, but maybe together we can manage. We're going to try, anyway. We've been gluten-free for four days together so far.

Here's my question...

I felt great the first three days. Sores clearing up. No diarhea. Slept good and brain fog lifting. But this morning, I got up and felt awful. My left hand was so swollen I can barely type, and I have broken out in an itchy rash in my "sensitive area" and I have another sore up inside my nose. I feel energetic and clear-headed and my stomach is fine. I know I didn't accidentally ingest any gluten. Do you think this is some kind of "detoxification"? Maybe the gluten clearing out of my system? If so, it is awful. If you had a similar situation when you first went gluten free, please share your experience so that I can have some piece of mind. If it's not that, maybe I am having an allergic reaction to the dapsone. I am sensitive to sulfa products.

[Marilyn R]

Hi Hubby and Welcome to the forum! I'm glad you finally discovered the answer.

I've read quite a bit over the past 15 months, but I'm not an expert. For me, some symptoms improved immediately but others took longer to improve. I had good days and bad days at first, and I think that's normal.

Make it a priority to eliminate cross-contamination in the kitchen. You could be getting sources of gluten from old cutting boards, chipped non-stick pans and cooking utensils, silverware in your drawer (from the little crumbs from wheat bread). Hopefully other posters will fill in the details, or you can use the search engine on this forum to learn more.

The other thing that happens is new food intolerances. The proteins in soy, dairy and corn are very similar to wheat, as well as the "safe" gluten-free grains. Your antibodies are in attack mode and their warrior has completely disappeared. They might start attacking anything that appears like the warrior. Or if you're cc'd, they're going after the little bits with a vengence.

A third thing to look at is shampoos and lotions, lip balms. Anything that has gluten and enters your mucous membranes can set you back.

It will take time to get better. You went undiagnosed for a very long time. I hope you and your wife feel better on a totally gluten-free diet.

[hubby71]

I did have some soy sauce the day before on some gluten free noodles. Also, cross contamination is possible, as we haven't thrown out all the old food yet. We were going to do that Saturday, when we both had off. I made some Udi's gluten-free toast in the toaster, so that might have been it, too, as there might have been old particle of bread in there. This is so frustrating, because I don't know what set me off, but I am in extreme pain and just trying to deal with it. My symptoms were very mild until the last year or so, and now it seems like every little things sets off a major allergic reaction of some type. It's very hard not to get depressed about it. I was actually so excited to be diagnosed, because I had an answer finally to what was wrong with me, but going gluten-free is not as easy as I thought.

[RacerX35]

Soy sauce was one of the first things that my wife pointed out for me,, and I LOVE soy sauce with my asian food. I didn't believe her and read the ingredients, as I'm sure you already know, it has wheat! We found the gluten free soy sauce and I take it with us when we go to a sushi place or any other asian resaurant (Vietnamese is one of our favorites). We've worked very hard to clear the cook ware and all other things for me. I am not celiac, but gluten sensitive (I'm the only one between my wife and our two children) and will have siezures (I'm also epileptic lol) after consuming gluten. We have seperate toasters and my wife even brought seperate cookware for a family dinner at my brother's house just yesterday. It is hard, but we have worked to stay safe. I'm sure you will be able to beat this out soon, seeing as you are both confirmed celiac now. If your wife had seperate cookware and all that, just throw out the stuff you used to use.

Good luck!

Ray

[Bubba's Mom]

I thought I would also mention...get a new toothbrush. I hope you feel better soon!

[Marilyn R]

If you want to avoid soy, or discover that's a problem, coconut aminos (from health food store) are a reasonable substitute for soy sauce, not as salty, but you can always add salt.

It is very frustrating at first. Hang in there, good luck cleaning out the kitchen this weekend. Say good-bye to bad stuff! (And feel good about donating to the local food pantry and/or good cause thrift store.)

Good luck Hubby! You learn more as you go on with it.