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Help! Six months gluten free and sick again

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Hi there!  I hope this helps you.

I have Celiac disease and DH for 15 years now.  I am 65.

I was on a very strict "gluten free" diet for years and kept having setbacks.  (That's what I call them).  I had daily migraine headaches, terrible rash, muscular pain, joint pain, loss of balance, hair falling out, and the list goes on.  Oh yes, and may I add to that...weight gain.  I was really swollen.

I was a nurse years ago, and I knew the doctors weren't really well informed about this disease.  All they say:  "stay away from gluten"...and I was, however, continued to be sick!

I had to figure this out.  Celiac disease is an autoimmune disease.  I researched until I found what the problem was.

Gluten is just ONE TYPE of LECTIN.  Many other foods have LECTINS!!!  So, I went on a Lectin free diet and within weeks...yes...weeks...my inflammatory symptoms disappeared!!!!  Lectins are POISON to those of us with ANY type of autoimmune disease.  Why don't most doctors know this???  Because they treat patients with medications and don't really study nutrition.  This is sad but true.

I have been on a lectin free diet for 4 months now and feel like a new human being!  I have lost 25 lbs...all of that was swelling due to inflammation.  I no longer have migraines, all of my joint pain, muscular pain...all the rash...gone!!!!!!!!

My favorite source is Dr. Steven Gundry...he is a well know cardiologist and the only one I know of, that stepped out of the box to research lectins and how bad they are and why.

I hope this helps you.  If you have a thyroid issue, this may be another autoimmune issue for you, so you really want to look into staying lectin free.  I realize this is hard...I have to cook all of my own foods and bake my own bread, etc., but I am feeling healthy and like a new human being.  Dr. Gundry is on youtube…I hope you at least give this a try...the results will be worth it!  

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This is the first time I've ever posted here but I learned I had celiac about a decade ago, back when the one brand of gluten-free bread available at the store had the flavor and texture of sawdust. And I'm not exaggerating. I majored in Dietetics and a group of us tested it in a lab. It. Was. Awful. Anyway, I've been a baker for over half my life. In recent years I've used Bob's Red Mill, which was okay for a long time but recently has been making my partner and me very thirsty, plus it has an odd aftertaste and is SO dense. Like my biscuits and cakes kept coming out depressingly flat, even after I'd reduce and sift flour, add extra egg white and baking powder, reduce oil, etc. Nothing was working. A couple months ago, at my wits' end, I was like wait, I remember loving King Arthur Flour once upon a time. Lo and behold, they have gluten-free flour and it. is. AMAZING. I've so far made fluffy biscuits and two batches of fluffy dinner rolls, as well as piggies in a blanket in these past couple weeks. Oh, how I've missed fluffy, flaky bread! It kneads really well. I usually do about a teaspoon of yeast in some warm water with a tablespoon of honey. Once that's bubbly I throw it in a bowl with the flour and an egg and other ingredients. Recipes that measure weight are more reliable than those that measure cups. I haven't even needed to add arrowroot or psyllium for better binding. I just follow recipes to the letter (plus the honey trick). I like to knead for a few mins, let proof for half an hour to an hour, knead again, shape, then let proof for half an hour to an hour again, then bake.
Back when I was really, really, really sick, I couldn't process gluten or dairy or... even regular grains. Rice was going straight through me. I was losing 5 lbs a week and already underweight. Couldn't handle fruit either. So I basically lived off of meat, beans, nuts, and veggies for a few months until my digestive tract stabilized. Then I slowly reintroduced rice, then dairy, etc. It's not uncommon for people with Celiac to also have issues with corn or soy. I'd try going completely grain free for a little bit. Good luck with all your tests and everything! Lots of hugs.

Edited by twilightsparkle

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Cyclinglady has good advice. I have taken up a paleo-keto(ish)-clean food diet to help heal my intestines. I feel better for it. But I do eat sweet potato. All my food comes from nature's packaging and have one single ingredient. Helps me isolate what might cause me GI distress. 

Plus, I have no desire to pay through the nose for processed gluten-free foods, nor attract more medical issues. 

I sincerely hope you find answers because it is horrid to have to live as some of us have/still do.

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