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

The Gluten Nightmare


FoxersArtist

Recommended Posts

FoxersArtist Contributor

My while family has been gluten free for 3 1/2 months after being shocked to learn that both hubby and I as well as at least one of our 2 kids has celiac. I could not feel more happy about being gluten free and can't imagine going back - though going into walmart where their Subway Restaurant is baking bread still makes me want to cry. (Why couldn't they have put a McDonald's or some other gross restaurant in there, why a SUBway?!)

Anyway, we have been really proud of our efforts to go gluten free and to keep it out of our house and wont even touch an item that we are unsure about. Unfortunately it seems like we are still suffering as casualties of the gluten nightmare. Something no one here has known about me until now is that my husband and I run a rescue for parrots. We care for between 20-30 parrots at any given time and work to improve their diets, overall health, and any behavioral issues before adopting them out to responsible homes. Unfortunately all of the food we use for our birds staple diets contain gluten. We feed mostly pellets and fresh foods but even most bird seed mixes have gluten in them! We have gotten really good about spraying down newspapers before changing bird cages (this keeps any of the food dust from becoming airborne) and have not seemed to have many problems, but my goodness - mixing the food every month has KILLED me. I have been sure to use protection such as a chemical grade respirator and have showered promptly after mixing food, but I still seem to get glutened every time. We also have several birds with special diets. These birds, called lories, eat a powdered nectar (all of which are just swimming with little gluten monsters) instead of solid foods. The birds like to spring out of their cages and onto my shoulder before I can react and on multiple occasions they have quickly leaned down to give me a kiss with their nectar covered beaks. Glutened! Ack! I have done as much research as I could find on switching these guys to an all fruit and veggie diet but finding a balanced diet for them is very complex and I'm afriad of not providing them with the balanced diet that their bodies need.

My husband, who has managed mostly to keep himself from being exposed to the birds food, seems to be running to the bathroom more frequently than I have ever seen. The gluten free diet has taken away so many of his other health issues but he has found himself to be extremely sensitive to most other foods now. He cut out dairy after going gluten free thinking this was probably the source of his troubles but still seems to get sick randomly with no clear pattern as to what the offending food was. Sometimes it's meat, sometimes it's a salad, sometimes from drinking a beverage. We are stumped. It's hard to watch him feeling so sick, especially since he didn't have too many symptoms before going gluten free. When I get glutened I seem to have an instant colitis flare up and lots of troubles breathing, symptoms that seem to be getting more intense each passing month, so I dred any possible exposure to gluten anywhere. Our birds are an irreplacable part of our lives so I am really just at a loss for what to do and feeling a little frustrated. Thoughts?

-Anna


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I am really wondering why in the world all the bird food has gluten in it. In the wild parrots absolutely do NOT eat gluten grains! They live in the jungle, where they live on fruits, nuts, seeds etc.

Here is a good website with ideas on how to feed your parrots without any of the gluten stuff you have been feeding them (which is probably not even good for them).

Open Original Shared Link

Here is another good site: Open Original Shared Link

I know they say to feed the parrots pellets. But I don't think that is necessary. When I was a kid we had an amazone, and I don't think we fed him pellets. He got seeds, nuts, fruits and vegetables, and he demanded to get a dish of our supper every night (which often included meat, and he loved it). He lived to be about 50 years old (we got him when he was 30), and eventually died of pneumonia because of a draft.

Natural Diet:

Their diet typical consists of seeds from eucalyptus and acacia, as well as nuts, fruits (including berries), nectar, flowers, and insects and larvae.

In order for you and your husband to be healthy, you really need to stop feeding that gluteny food to the parrots. Even that nectar should be replaced with gluten-free nectar (even if you have to make it yourself).

It sounds like you could end up with life threatening symptoms if you don't stop exposing yourself to airborne gluten, and being glutened by 'bird kisses'.

YoloGx Rookie

Seems like if you make your own gluten free bird feed others might want to buy it too.

Bea

Jestgar Rising Star

No advice. Just want to mention that you are AWESOME for rescuing parrots. I could never keep one myself as I don't have the time to give such an intelligent animal the attention it needs, but thank you for doing it.

Jestgar Rising Star

I was curious about what parrots eat so I did a quick google search and found Open Original Shared Link which seems awful pricey to me, but if you decide to make your own mix it might give you an idea of where to start.

Ginsou Explorer

I'm also a Subway fan. I've solved the problem.....I buy a Subway sub and put the "fixings" between 2 corn tortillas. Usually bring the sub home, so I can warm the tortillas and use my special mayonnaise. Another time I purchased some corn tortillas in Walmart and went into the Subway area of the store and simply sat there and transferred the fixings to cold tortillas. It was heaven.

I've recently discovered via blood tests, that I'm also allergic to corn, potatoes,yeast,eggs,peanuts,soy,carrots,peas,and much more. All of this in addition to being lactose and gluten intolerant. Don't quite believe the blood tests....food scratch tests will be next.

Adelle Enthusiast

Ginsou, do you mean that you buy the fixings FROM subway? If so you are definitely getting cross contaminated!! Those places NEVER keep things even close to safe!!


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



Celiac.com Sponsor (A8-M):



dally099 Contributor
Ginsou, do you mean that you buy the fixings FROM subway? If so you are definitely getting cross contaminated!! Those places NEVER keep things even close to safe!!

holy cow i dont even get a salad there, as it is one big crumb factory there and crumbs are the enemy!

Ursa Major Collaborator
I'm also a Subway fan. I've solved the problem.....I buy a Subway sub and put the "fixings" between 2 corn tortillas. Usually bring the sub home, so I can warm the tortillas and use my special mayonnaise. Another time I purchased some corn tortillas in Walmart and went into the Subway area of the store and simply sat there and transferred the fixings to cold tortillas. It was heaven.

I've recently discovered via blood tests, that I'm also allergic to corn, potatoes,yeast,eggs,peanuts,soy,carrots,peas,and much more. All of this in addition to being lactose and gluten intolerant. Don't quite believe the blood tests....food scratch tests will be next.

Oh, goodness, you should NEVER take the fixings off any sandwich or pizza (or the croutons off a salad), and then eat them! They are cross-contaminated and NOT safe at all.

You have too many intolerances, meaning that there must be another underlying problem besides gluten intolerance. I am in the same boat, and I am working on finding out what is causing me to have leaky gut.

I do believe I am truly gluten intolerant, but there is something else wrong. It could be heavy metal toxicity or Lyme Disease for instance.

FoxersArtist Contributor

Jestgar,

Thank you SOO much for the help. The unfortunate problem is that each species of parrot requires a different diet...something that a lot of people don't understand and something I had perfected with their old diet, but I am now exploring the option of making my own mixes using quinoa or buckwheat, which would be better for them anyway. We'll see how it goes...oh and I did find a nectar that was safe for my lories, though it's extremely pricey. Did you know that wheat grass is actually gluten free unless it contains some of the "berry" or wheat grain (which is the part that contains gluten). I had no idea until I started doing research on wheat grass because it's listed in some of these bird foods.

As far as the Subway goes - I have dreamed many times about going to subway and just asking for their meat and cheese...heck, I would be in heaven just to have some of their mayo again BUT I know better and won't go anywhere near there. If you have ever seen what happens to the bread when they cut it open (crumbs pouring out everywhere) and then they touch the meat and cheese and lettuce and everything with the same gloves. Nooooo way! No thanks! I'll just keep on suffering those baked bread smells.

-Anna

FoxersArtist Contributor

Parrots are sooooo hard! In my opinion second only to adopting or having a human child. Very, very smart, very loud, very messy, frequently bite and command a lot of respect and attention from their people. They are not the right pet for the majority of the population and yet they are the 3rd most popular companion animal in the USA. Very sad. Amazingly, we have large parrots like macaws surrendered to us every few weeks and usually have about 30 at a time. I must say though, there is nothing like watching a malnourished, depressed, fearful parrot do a total 180 in your care! Sorry for the OT...just had to share. :D

-Anna

No advice. Just want to mention that you are AWESOME for rescuing parrots. I could never keep one myself as I don't have the time to give such an intelligent animal the attention it needs, but thank you for doing it.
ShayFL Enthusiast

We rescue Great Danes. Rescue work is very rewarding once you get past the anger and sadness. Great Danes are the worlds cutest puppies and people buy them because of this. Then that cute "little" puppy weighs 100 pounds in 6 months and has completely destroyed your hardwood floors, broken grandmas 100 year old vase and knocked the baby over too many times. Off to the pound/rescue they go. It is so sad. If you want a Great Dane, please consider rescue. You can get an older puppy that has been pre-screened.

PEOPLE SHOULD DO A LOT OF RESEARCH BEFORE THEY BUY A PET!!!

This is our Bacchus at 6 months:

http://www.terracegallery.com/bacchus2.webp

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.