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Newly Diagnosed... Where Should I Start?


kstahl3

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kstahl3 Newbie

Hi all... Holy Cow, there is a lot of information out there about what to do and what not to do while trying to cope with this Celiac Disease... Celiac has just been added to my list of "stuff" after a recent biopsy, along with Ankylosing Spoldylitis, IBD, Fibromyalgia, CFS, and degenerative disk disease; it seems that if you name it, the doctors can tell you that I have it in some form or fashion; and I am only 26! I am drowning... I need help! I have zero support on the home front, neither in the form of family or friends because after so long of being simply miserable people find it easier to just walk away. I am sure someone out there has been through that and knows how I feel.

So, I guess, where I was going with all of that whining was, where should I start? What should I read? How should I educate myself to know how best to get healthy? I just want to be healthy and pain free, though I think the two may go hand and hand.

Thank you!

Kelly


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ang1e0251 Contributor

You are in the best place there is to learn about celiac disease and it's myriad secrets!! Welcome to the forum and simply start reading. There so much info here and so much to learn.

no-more-muffins Apprentice

I think you should get some books from your local library or bookstore.

Here are some I have read:

"Celiac Disease" by Peter Green

"Wheat Free Worry Free" by Danna Korn

"Healthier Without Wheat" by Stephen Wangen

"Gluten-Free Baking Classics" by Annalise Roberts

There are many more books out there. As far as the diet goes, start with the obvious sources of gluten (bread, pasta, pizza) and eliminate that. Then start reading labels of things with "hidden" gluten in them (salad dressings, spice mixes, etc.)

I'd also head over to your local health food store and stock up on some gluten free stuff to get you going. It is good to have things that you can grab and eat when you are too overwhelmed and busy to think about what to cook. I don't use a ton of that stuff, but it is nice to have at first when you are trying to figure out what to eat. If you like to cook and bake, I'd definitely suggest getting some flour. The Gluten-Free Baking Classics book gives some great advice regarding which kinds of flours to buy and how to make wonderful gluten-free breads and baked goods. It is a great book.

And like the pp said, spend some time around these boards because the people here have so much info. And try to relax. I know it is hard at first but realize, you can substitute almost anything you want with something gluten-free. And there are more and more gluten-free products available all the time so it really does get easier.

CeliacMom2008 Enthusiast

A huge help for me was to make a list of foods I already cooked and see how I could adapt them (if necessary, many were already gluten free just because they were). This helped me tremendously in planning meals and shopping. It was a great way for me to get organized and manage all the changes. It was wonderful for things like leftovers as well. I could plan out things like having white rice for dinner and then turning it into fried rice for the next day's lunch. Or pot roast on Sunday became Monday's stew. Ham become ham and beans...well you get the picture. I wasn't much of a cook, so I really needed this. As I've become a better cook and more used to gluten free live, I still keep it updated (I made it in Excel), prettied it up and keep it posted to our fridge.

The first couple of months are very overwhelming, but it really gets much easier. Just dig in like it's a new hobby and you'll be fine! And I think you'll probably be surprised how much better all of your aches and pains get on as your body heals.

Oh, some people have trouble with dairy products when they are first healing. One, I'd recommend waiting to remove dairy until you know it's a problem - you have enough to handle right now. Two, the problem with dairy is that Celiac disease can damage the small intestine so badly that you can't digest the milk. It usually is NOT necessary to remove all dairy/casein. Three, it's usually a temporary thing if you have to deal with it all. Once your gut heals you can digest the milk again. But again, this is just a precaution. You may not have any issues with milk at all.

Welcome to the forum and I hope you're feeling fabulous soon!!

Mskedi Newbie

I found Korn's Gluten-Free Living for Dummies to be helpful and positive. It might be a good start.

kstahl3 Newbie

Thank you all for your feedback! I am ready to just give up eating all together... ;) If only that would work! I have picked up some good tips just in the short period of time I have been browsing this site. Thank you again for the information and I will keep looking around. Hopefully I can get a grasp on things and it will come together well.

ranger Enthusiast

Welcome. This is the place to be. When I first discovered this forum, I lurked for a long time. Just read and read. You'll find the info you need. For now, stick to basics - fresh fruits, veges, lean meat. I'd lay off dairy for awhile, and proccessed food. Good Luck. Read on!


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LDJofDenver Apprentice

It can be a little overwhelming at first. We

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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