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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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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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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?


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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).  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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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.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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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


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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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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22 hours ago, MisterSeth said:

"modified FOOD starch" i'll pass

675100890_ScreenShot2020-01-18at7_04_27PM.png.0720d81822ca5cc12d6f1408e8affb37.png236747841_ScreenShot2020-01-18at7_08_04PM.png.4fb4e27dd1116dde7e0368fc02308f1a.png

236747841_ScreenShot2020-01-18at7_08_04PM.png.4fb4e27dd1116dde7e0368fc02308f1a.png

OK, those screen shots turned out so tiny. Anyway, if you go to the Amazon link in my previous post; they have a photo of the back of the package where it states that it is gluten free, kosher, peanut free, dairy free, tree nut free, soy free, egg free.

You need not worry about modified food starch in an ingredients list in the US especially when it's an item labeled gluten free. If the modified food starch began with wheat, it would not be allowed to be labeled gluten free. Also, because of allergen labeling laws, it would have to state wheat as an ingredient. 

Unless modified food starch has the word “wheat” next to it, then it’s derived from corn, therefore free of gluten. July, 2012

https://www.cureceliacdisease.org/faq/does-modified-food-starch-contain-gluten/

 

 

Modified food starch is gluten-free unless it is made with wheat. However, in the United States, any product that is made with modified food starch that comes from wheat must somehow list that wheat is the base for the modified food starch.

https://www.findmeglutenfree.com/ingredients/modified-food-starch

 

  • Gluten-free ingredients you don’t need to avoid: caramel color, maltodextrin, and maltose (these are all made from corn), dextrose, glucose syrup (these are gluten-free even if made from wheat due to their extensive processing), distilled vinegar (this is gluten-free even if made from wheat because the distillation process removes gluten), artificial flavor, food starch/modified food starch (unless the ingredients list or allergen warning states “contains wheat” and the product is not labeled gluten-free).
  • https://celiac.org/about-the-foundation/featured-news/2016/01/gluten-free-101-need-know/
  •  

 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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40 minutes ago, MisterSeth said:

since they just say "food starch" they could have made it from a cows arse for all i know. they need to just say what it comes from every time lol

Dear god yes lol, I have a corn allergy and the starch is hit miss if it triggers a reaction, but they could also be from rice, or tapioca....seriously they need to go the route of many shampoos/body washes that list the chemical/ingredient then in parenthesis have the source


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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4 hours ago, MisterSeth said:

since they just say "food starch" they could have made it from a cows arse for all i know. they need to just say what it comes from every time lol

I agree, but in terms of celiac disease, wheat must be disclosed on the label because the allergy labeling laws.  So, if wheat is not listed, it is safe.   Take the time to read the FDA recommendations for gluten labeling.  It could use some re-work or be expanded for those who have additional intolerances or allegories.  Get involved!  Contact your congressman. 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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exactly. anything can be an allergen so for them to not be specific is eventually going to hurt someone. im personally working a theory that im allergic to citrus, its hard to tell because im not sure if citric acid or malic acid are chemically synthesized from something or if they're extracted from citrus peels

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