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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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KrazyKick

2 1/2 Years Later Still Not Absorbing?

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Hello,

I hope everyone had a safe and pain free holiday. I am just looking for suggestions on how to move forward in the goal of health. I am an avid reader here but rarely post. Now I need to.

I learned 2.5 years ago that I had celiac plus food allergies to: eggs, casein, tree nuts, peanuts, and, avocado. Although I have been glutened in the past my diet is the cleanest I know how to get it. I buy all my produce from a CSA (direct from the farm) that is organic so I also eat seasonally. I get all my organic, 100% grass fed meats directly from farms. I eat rice pasta and wraps and a very few safe products from the grocery stores. I workout and have a balanced stress free (almost, lol) life. The one thing I don't do that I want to is take a probiotic. I don't know which one to take because I seem to not even absorb my multi vitamin even though it is gluten-free. I can't find a good doctor to save my life (literally).

I am NOT getting better. My outrageous symptoms did get better within the first year but I have been unable to move past that point. I spend all that time and $ on good food I'm afraid is being wasted. Is this my life forever? Is there something I am not doing that I could be doing? What harm can come of STILL not processing my food in my body correctly?

Just a touch sad today and looking for ideas...

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your may need a digestive enzyme more than probiotic..Also, what are those "few, safe, products"? Around here i see it recommended to stay totally unprocessed at first, quite a few don't do so well with "gluten free" processed foods. Also, what about dairy? good luck.

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I'm sorry you're not well yet. :(

It is possible that there is something else wrong. I personally have hypothyroidism and many of the symptoms overlap that of celiac disease. My thyroid meds aren't ideal at the moment so I have a lot of symptoms that I would have mistaken for celiac if I didn't know better. Making a list of symptoms and googling them (and seeing a doctor too i guess LOL) might turn up something else that can be treated.

Best wishes to you.

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your may need a digestive enzyme more than probiotic..Also, what are those "few, safe, products"? Around here i see it recommended to stay totally unprocessed at first, quite a few don't do so well with "gluten free" processed foods. Also, what about dairy? good luck.

I can't have any dairy, casein is the protein of all dairy :( The few safe products I have are usually canned/dried beans, lentils, quinoa, gluten-free soy sauce, and sardines/tuna. Are there more than one kind of digestive enzymes? Is there a brand everyone seems to tolerate best?

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Thank you. I am thinking something else might be wrong too. I have had my thyroid checked-came back fine. I have a few over use injuries (from working out) or that's what my doc thinks. My PT (phycial therapist) thinks it might be something more like RA because I am not responding to thepary. But that has nothing to do with digestion right? My head is spinning.

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Hi KrazyKick-

I know the last thing you want to do is remove more foods. I had improvement with digestive symptoms my first year gluten-free, but other symptoms worsened until I removed all high lectin foods at once. When we remove gluten we often replace with others that can be equally harsh on a leaky gut.

Given your problems with some other proteins that fall into the groups of food with high lectin count - you may want to look into them.

Let me know if you have questions - there are two of us at least on the forum that have found a connection between lectins and healing.

Hang in there - keep asking questions and pushing your doctors to run all possible tests - it is possible to solve our individual puzzles, unfortunately it takes time.

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Wow I sure do have questions. I was a little alarmed to see so many of my current issues associated with high lectin foods and how many foods I can't eat already on that list! One list of high lectin foods say no mushrooms other ones say you can eat mushrooms. I would love to try this but I am having trouble finding a reliable list of foods to avoid. I did read up and I understand how there is a level of lectins in almost all food so the varied list I get but I do need somewhere to start. So far I have this: no eggs, sweet n hot peppers, tomato, potato, eggplant, beans including soy, nuts, gluten, dairy, processed foods.

Rice is a grain but is it a high lectin grain?

I also bought some digestive enzymes. I am feeling hopeful again :)

Thank you everybody :rolleyes:

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I went the strict route myself. I am not suggesting you do this strict of an elimination -- just letting you know what I did - there is a lot of info online about elimination diets - it is best to read as much as you can and then make your plan. I think it took almost a month for me to map out what I was going to do. For me this was the best route as I had tried for over a year to remove one food or food group at a time with food/symptom log that never produced strong conclusions. With hindsight it made sense that I couldn't figure it out because my meals had several items I was intolerant of so removing one at a time didn't make much difference.

No Grains - including rice -- white rice has a lower lectin content than brown

No Dairy

No Legumes - including soy, beans, peanuts, peas

No Nuts

No Seeds -- Quinoa is a seed that has similar protein structure to grain with high lectin count

No Eggs

No Nightshades - including potato (sweet potato/yams ok), tomato, eggplant and peppers (all except black pepper corn), paprika and spices mixes with chili peppers

I removed them all for about a month then trialed each individual food (not group) with at least three days between to log reactions. Soon I had to only trial foods on Fridays so I didn't miss work as I was having strong and varied reactions to almost all high lectin foods.

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I'm sorry to have to say this, but I have to agree with the person who thinks that it might be the few safe products. I am a super sensitive celiac, and I have problems with some of those products. I also have problems with some farmers. I need to check with them about their farming practices. I think that the use of wheat containing slug and cricket bait have caused problems for me as well as wheat straw mulch.

The thing that helps me the most is to keep a food/symptom journal. I vary my diet by only one new item per week to make it easier to figure out what might bother me. If I am having symptoms currently I eliminate and re-add on the same schedule to figure out what is going wrong.

I hope you feel better soon.

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Thank you. I have kept a food journal for 2.5 years :) Didn't tell me anything since I have that issue every time. I won't "really" know what the cause is but I don't see any difference between lectin avoidance and elimination diet.

I do have good news! After one day of lectin diet I had a normal digestion this morning!!! Been a LONG time since that happened. Why exactly...not sure. I know things are looking up and that makes me happy. My digestive enzymes came today so I began those today too. Probiotics are on the way also.

So in a way, I won't know if it was corn or soy or what until I begin to work them back into my diet after 30 days. I know it's not the veggies though, at least not the ones I had yesterday from my farmer. Good to know even those can come into contact with wheat. For crying out loud, what doesn't?? :)

Now I'm just hopeful tomorrow morning goes as well.

Thanks again!

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I do have good news! After one day of lectin diet I had a normal digestion this morning!!! Been a LONG time since that happened.

!!

Sounds like you are on your way. I hope things continue to go well.

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