Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Getting Glutened - Beyond Frustrated

Janstpatrick

By Janstpatrick
in Coping with Celiac Disease

Recommended Posts

Janstpatrick Newbie
Janstpatrick
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

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 Apprentice
Zodi1993
Posted

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 Grand Master
Ennis-TX
Posted

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 Newbie
Janstpatrick
Posted
  • Author

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 Grand Master
Ennis-TX
Posted

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 Newbie
Janstpatrick
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Janstpatrick Newbie
Janstpatrick
Posted
  • Author

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. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    klmgarland
    Newest Member
    klmgarland
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.