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It's Official, I Have Celiac Disease

karinp

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karinp Rookie
karinp
Posted

I had an endoscopy yesterday. My doctor just called and all six biopsies were positive!! I'm nervous and kind of sad about having to go gluten free but am excited to see if i feel better. I'm sure i will have a ton of questions for all of you! I guess the next step is meeting with a dietician. Any advice would be appreciated. Thanks!

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gfcolorado Newbie
gfcolorado
Posted

I had an endoscopy yesterday. My doctor just called and all six biopsies were positive!! I'm nervous and kind of sad about having to go gluten free but am excited to see if i feel better. I'm sure i will have a ton of questions for all of you! I guess the next step is meeting with a dietician. Any advice would be appreciated. Thanks!

Congrats...Kind of!! Welcome to the world of Celiac. For me, the first 3 months to year were the hardest because I wanted everything I couldn't have. But then it got pretty easy and now whenever I find a new gluten-free product I get really excited. It's also a great way to discover new restaurants. There have been times when I have almost started to cry in the grocery store or when I went to a restaurant that I thought was gluten-free and when I asked ?'s realized it wasn't. But it gets easier and it's normal to have the occassional breakdown. Just remember to always ask questions before eating out. It's hard to do but worth it. Also, make sure to say you have Celiac otherwise because so many people are gluten-free now and cross contamination doesn't always matter to them.

Good luck and hope you feel great again soon!

nvsmom Community Regular
nvsmom
Posted

Sorry to hear of your diagnosis but I hope you are able to feel and see many improvements once you've been on the diet for some time.

Celiac support groups are a good way to meet people and find resources in your area.

The first few shopping trips are tricky and expensive as you replace foods that have gluten in them (like soy sauce, teriyaki, Worcestershire, BBQ) or have been made in places that have wheat so could be cross contaminated (like oatmeal) and baking goods like bags of sugar or baking powder that might have had a flour coated spoon dipped into them. I found myself mourning a few foods, but after 3 months, I don't feel that hard done by anymore. :)

You'll get there. After a few weeks it starts getting easy... And it's nice not to have pain we you eat! LOL

archaeo in FL Apprentice
archaeo in FL
Posted

Karinp, I'm glad your doctor was so fast with the response - that's great! (I had to wait two weeks for my biopsy results!)

I think mourning is totally appropriate for many people. This will be a big change. I had a few "meltdowns" at first, and still when I'm traveling get frustrated trying to find food (so I always pack lots of snacks now).

But the opportunity to live healthier is great - and so much better than a disease that cannot be controlled through diet.

This forum has been incredibly helpful for me, but I would also recommend reading some books (preferably by medical doctors - search Celiac in Amazon or another bookseller and find some with good reviews). There is quite a bit of information that I would say is questionable floating around too. Ultimately, it will be up to you to educate yourself and determine what to do and how to do it. (For instance, some folks have suggested that getting all new pots and pans is absolutely necessary; I did not, as I bought a very nice set that I intended to last me for life. I couldn't afford another investment of that kind, and would have had to buy a cheap set. Instead, I made sure I washed them thoroughly. My TTG IGA levels dropped from nearly 200 to 28 in just three months; as long as that trend continues and I can get it down to a normal level in a year or so I think I'll have proven - to myself, at least - that I needn't have thrown out my good pots! That said, different people have different levels of sensitivity. I do most of the cooking and it's just my husband and I, so other than a now-dedicated cookie sheet [because I never seem to be able to get them as clean as I'd like, unlike my hard-anodized pots] for frozen wheat-containing foods for him, I've pretty much removed CC issues at our house, since I don't cook him or guests special foods.)

Try to find good health care providers that you're comfortable with. My GP and GI didn't refer me to a dietician - I thought they would, but my GP wants to work with me. She follows a gluten-free diet (mostly whole foods), and I haven't asked why, but she's been really good at getting all of my vitamin deficiencies in check. I look forward to a day without - or at least with fewer - supplements.

The most important things in working with a dietician, I think, are to make sure s/he is knowledgable about Celiac, is knowledgable about what foods contain or may contain wheat (and other bad grains) and gluten, and is knowledgable about vitamin deficiencies and how to work with you to get everything balanced out, supplementing where necessary and then tapering that off as you heal.

And, after only four months, I can say that it really does get easier.

If there's anything you find yourself really missing (cookies, brownies, cupcakes, pasta), there are TONS of awesome gluten-free recipes out there. I like to cook, so I make these for myself when I want them, but there also lots of bakeries and some small dedicated gluten-free shops you can order from in addition to the "big guys" that distribute gluten-free foods to grocery stores.

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      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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