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Drake71

8 Months Post Diagnosis Still Having Problems

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Hello, I’m 19 years old and I started getting symptoms back in March. I’m an athlete so I’ve already been used to tracking nutrients and calories and etc. so I know I’m not having cc issues because I’m extremely cautious. Haven’t had any dairy or anything either. If I eat any processed foods I have nausea and (d) the next day and still have stomach cramps. I’ve tried eating only Whole Foods for weeks and it doesn’t seem to help that much. I only had symptoms 2 months before being diagnosed but I barely feel better than when this started and I feel like I’ve tried eliminating everything and nothing helps, even digestive enzymes. Does anyone have any advice or similar experiences?

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Elimination diet and a food diary are our best tools. Have you read the newbie 101 thread?  Do you live in a shared house or is the whole house gluten free? Have you tossed out your scratched pots, cutting board, colander, wooden spoons, condiements, or anything else that might be contaminated? Or are you anywhere where flour is being used? And are you avoiding eating out?  It can take over 6 weeks for symptoms/damage to stop from a single exposure so if you keep getting exposed you will see little improvement.

Have you had any vitamin panels done? With the damaged intestines often can not absorb enough nutrients, and we can metabolically require more of some then normal people. Magnesium, Vitamin D, Iron, the Full spectrum of B-Vitamins are the more common ones

Heck it might not be gluten, I developed several other food intolerance issues and allergies after dia. Most celiacs will have a issue with dairy starting off as the villi produce the enzymes to break it down. Some react to oat the same way regardless of them being gluten free.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
It could be another Autoimmune issues on top of it. I ended up with Ulcerative Colitis which caused D, bloating, painful gas, and blood/mucus in stool. It flares to more then just gluten.

Celiacs have damaged intestines, which can make us more prone to SIBO (Small Intestine Bacterial Overgrowth) and Candida

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Hi Drake & welcome!

Have you discussed this with your doctor? Has he/she checked to see if your antibodies are coming down? Do you have copies of your endoscopy report? (You should always get & keep copies of medical records & labs) What was your Marsh score?

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I blended my food the first weeks after my gluten challenge. As my body had problems on many levels digesting foods. I liquified whole foods veggies into soups and fruits into smoothies adding nut butters or  as my proteins. Those without as many I tolerances as me can do protein powders .

I found I was damaged and in pain, yet still hungry. I focused on anti-inflammatory  whole foods in those early stages as my base.

As for supplements I had to try several before I found ones that were a fit. I try to do liquid supplements minimal additives whenever possible.

Best wishes on your path to healing.

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Do you know about cross-reactivity? The likely foods that mimic gluten are dairy, yeast, oats, corn, instant coffee, and rice. in that order I think. i heard soy too but I'm not sure. try finding an egg white protein for your training, thats what I used pre-diagnoses and it never gave me stomach problems at all

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26 minutes ago, MisterSeth said:

Do you know about cross-reactivity? The likely foods that mimic gluten are dairy, yeast, oats, corn, instant coffee, and rice. in that order I think. i heard soy too but I'm not sure. try finding an egg white protein for your training, thats what I used pre-diagnoses and it never gave me stomach problems at all

Cross reactivity is an old internet myth.  I consume things like corn, dairy and yeast.  I have healed per repeat intestinal biopsies.  

Now, some celiacs have additional food intolerances or allergies.   I do.  Mine happens to be garlic and onions.  I used to be lactose intolerant (dairy) but that resolved on a gluten free diet.  The villi grew back allowing them to release enzymes n Cesar’s to digest lactose (milk sugar/dairy).  

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1 hour ago, cyclinglady said:

Cross reactivity is an old internet myth.  I consume things like corn, dairy and yeast.  I have healed per repeat intestinal biopsies.  

Now, some celiacs have additional food intolerances or allergies.   I do.  Mine happens to be garlic and onions.  I used to be lactose intolerant (dairy) but that resolved on a gluten free diet.  The villi grew back allowing them to release enzymes n Cesar’s to digest lactose (milk sugar/dairy).  

only gluten can cause the auto-immune celiac response? that's good to know. i might be a lucky one, i knew i was allergic to sesame seeds before diagnoses

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4 hours ago, MisterSeth said:

only gluten can cause the auto-immune celiac response? that's good to know. i might be a lucky one, i knew i was allergic to sesame seeds before diagnoses

Yes, funny but that list is a bit on with something, those are common issues people can develop sensitivities or intolerance issues with. Heck the coffee can upset damaged intestines. I developed a corn allergy and whey allergy, lactose intolerance just comes with the disease as you need the villi to produce enzymes to break it down. Yeast can upset the microbiome in your intestines and even settle in and make a home there in damaged intestines causing bloat, gas, distention.
Oats.... now oats can be a issue as 10% of celiacs react the same way to it as a gluten, the immune systems really can throw it in the same catagory. There is also the fact it is very commonly contaminated and some gluten free oats are mechanically sorted (a machine picks out the gluten grains) and are grown in rotation with wheat or they use the same harvesting and/or hauling equipment.

OH PS Julian Bakery Egg White Powder is great and some of the lowest cost, same with their Beef Protein Isolate, vitacost offers 20% off sales sometimes for best pricing, second best is to buy multipacks on amazon. The bars they have are decent but the fiber in them can cause gas/bloating. ....their bread is nice, but you have to keep it frozen and order fresh for best results. >.< Only low carb bread I could find before I started making my own.

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4 hours ago, Ennis_TX said:

Yes, funny but that list is a bit on with something, those are common issues people can develop sensitivities or intolerance issues with. Heck the coffee can upset damaged intestines. I developed a corn allergy and whey allergy, lactose intolerance just comes with the disease as you need the villi to produce enzymes to break it down. Yeast can upset the microbiome in your intestines and even settle in and make a home there in damaged intestines causing bloat, gas, distention.
Oats.... now oats can be a issue as 10% of celiacs react the same way to it as a gluten, the immune systems really can throw it in the same catagory. There is also the fact it is very commonly contaminated and some gluten free oats are mechanically sorted (a machine picks out the gluten grains) and are grown in rotation with wheat or they use the same harvesting and/or hauling equipment.

OH PS Julian Bakery Egg White Powder is great and some of the lowest cost, same with their Beef Protein Isolate, vitacost offers 20% off sales sometimes for best pricing, second best is to buy multipacks on amazon. The bars they have are decent but the fiber in them can cause gas/bloating. ....their bread is nice, but you have to keep it frozen and order fresh for best results. >.< Only low carb bread I could find before I started making my own.

I didn't even like bread before diagnoses. I was getting glutened by bags of red twizzlers.. speaking of which where can i get some gluten free licorice?

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4 minutes ago, MisterSeth said:

I didn't even like bread before diagnoses. I was getting glutened by bags of red twizzlers.. speaking of which where can i get some gluten free licorice?

Right now Vitacost as 20% off here is a quick link to the selection looks to be Yum Eats and Candy Tree Brands

https://www.vitacost.com/productresults.aspx?N=4293081418&Ntt=licorice&ta=lic

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20 minutes ago, Ennis_TX said:

Right now Vitacost as 20% off here is a quick link to the selection looks to be Yum Eats and Candy Tree Brands

https://www.vitacost.com/productresults.aspx?N=4293081418&Ntt=licorice&ta=lic

same as that turtle cheesecake i got last week. tiny and expensive :(... im a small guy i need my calories

oh nvm some of them are only 3$ for a small-ish pack. still like 10x the price per weight but not as bad

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