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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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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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