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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.