Getting Glutened - Beyond Frustrated

[Janstpatrick]

I was diagnosed with Celiac Disease last year in December. Right before Christmas. — I am no longer in contact with a family member after cancelling on going to a cookie exchange. Instead of being understanding, I got attitude about how I just don’t seem to want to attend any family functions.

Anyway, fast forward…

After a self inflicted relapse earlier this year (I just had to see if I had been misdiagnosed, how far I could push things…), I have been extremely careful about anything I eat, drink and even prepare for my husband. We have completely stopped eating out. I went through my kitchen and gave away or threw out all of my plastic containers.

I am still getting sick, at least once every two weeks.

I broke down in tears earlier. I am so fed up with feeling so awful. My house is a mess most of the time. I am not getting outside chores done. I am exhausted.

I finally filed for intermittent FMLA because I am on the verge of being fired due to excessive absences. I suffer through many days at work as it is. I get home and don’t have the energy to do any chores. It’s all I can do to fix dinner. The weekend finally arrives and I have all of these tasks on my “To Do” list that need to be accomplished before bedtime on Sunday.

Today ended up being a typical Saturday — I have apparently been glutened. So, I am not venturing out of the house to go grocery shopping. I have felt absolutely wretched. So, I will have to cram all of my chores into one day tomorrow. That is, if I am feeling better.

I really don’t know what else to do. My Doctor has helped me as much as she can without sending me to see a GI doctor.

Help please!!

[GFinDC]

Hi Janst,

It might help to simplify your diet.  Eliminate possibilities of gluten sneaking into your diet.  It's pretty easy to make mistakes with your diet when transitioning to gluten-free eating.  I suggest eating only whole foods for a 6 month period until you get used to things.  Cross contamination is another thing to look out for.  Shared peanut butter, butter, or other condiments can spread gluten in small amounts and make us sick.  Sometimes medicines or vitamins can have gluten, even teas and spices are possibilities.  Kissing a person who has eaten gluten recently can cause problems too.

Keep trying because every time you make a mistake you learn something.

You might want to try stopping all dairy for a while to see if that helps also.

And welcome to the forum

[Zodi1993]

Hi Jan,

Have you had any allergy testing? Could be you are allergic to something else. My daughter is Celiac and was still getting ill & feeling awful after going gluten-free. Found out through several blood tests that she is allergic to shrimp, wheat, yeast & sesame seeds. Many GlutenFree foods contain the things she is allergic too so her food choices just had to change. But she was recently diagnosed with EoE from her lastest endoscopy after being  sick with horrible acid. 

Go have more testing with a GI doctor that is current with celiac disease and it's many different symptoms.

Knowledge is a powerful weapon and you need to try and stay positive. You have many people who you can turn to and a big Celiac family that is always ready to listen & help where they can!

Welcome to the forum ??

[Ennis-TX]

It really can be anywhere or any random source, Few tips, as mentioned eat whole foods only nothing processed, Use Freezer paper on your prep surfaces to fix your foods, perhaps gloves in case your touching something else (door to fridge, pantry, computer keyboard, etc) that might have trace gluten residue. Have dedicated gluten-free cooking utensils, pots, and pans. Check your soaps, shampoos, make up and other hygiene products, these might also contain gluten that could be cross contaminating.  I personally had this exact issue and broke down sold everything I had and started new in a new apartment, new appliances, new everything since I was getting sick at least twice a week and could not hold a job. I will link you to the list of gluten ingredients to look out for. Hopefully you can find the cause and not have to go as radical as I did to get relief. It might be something as simple as a spice, or a random product in you house.

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

[Janstpatrick]

I will cut dairy out immediately. I have eliminated most processed foods already. I do use a lot of spices. I read labels on everything. It is so overwhelming.

Is there a good list of ingredients to look for in cosmetics, soaps, supplements... ?

It has been recommended that I take a probiotic, calcium and vitamin D. Do you take supplements?

[Ennis-TX]

Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think.

Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here.

Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones.

I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.

[Janstpatrick]

Okay. I think I will start with an allergist and a dietitian. 

[Janstpatrick]

Thank you everyone. I appreciate all of the information and support. 

I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now.