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3+ Months. Hope.
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3 posts in this topic

I'm a 50+ year old man. For more than 4 months I suffered severe nausea and diarrhea. After countless tests of various types, I scored >225 on both antibody tests. Before we did an endoscopy, I switched to a gluten free, dairy free diet.

The first 10 days were terrific. I felt a lot better immediately. But then for 2 months I had good and bad times. The nausea still sometimes chased me to my bed where I would spend 3-4 hours 5 days of the week. And certain fatty foods still made me sick, even gluten free.

Over the past month I've had more improvement. I have now had 12 days nausea free, and the diarrhea has stopped.

I'm getting used to the limited dietary choices - thank God for bacon and eggs! - and I feel better by miles from before I was diagnosed and in fact for years before.

My gastro tells me I've probably suffered stomach upset for years because I was undiagnosed. (More toast and crackers, I used to say when I was first sick, and of course that made me worse.)

It's a pain. Eating out is hard. Traveling can be nearly impossible. But Glutino nutrition bars and Mi-Del cookies have saved me on the road many times! Rice, ahhh, the most important meal of every day.

I don't wish this on anyone; it can be severely limiting. But feeling good is the best revenge on the damn gods of celiac.

Everyone, hang in there, especially those of you new to the diagnosis.

Good luck!

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Wonderful post ! Hope you continue to improve :)

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Best of health to you. A car oven is wonderful when one is on the go. I can cook porkchop, hamburger, or likewise with veges in mine!

Diana

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    • Consider using our forum private message feature to protect privacy....just in case you all did not know 😉 !
    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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