Feeling overwhelmed and down. My life is not gluten free, I am failing.

[Lynne Marie]

2 hours ago, Raptorsgal said:

How about If you work in a kitchen how do you deal with not seeing gluten. It’s been 3 days I haven’t eaten gluten which is a good start life Changing  for sure 

Hey, I don't understand either: do you mean, how do you deal with it, if you can't actually see where there might be gluten?

Also, do you work in a kitchen? (that would be so hard, I imagine!)

[Raptorsgal]

Yes it will be hard. I just want to get better. I’m really trying. Not eating gluten difficult for sure it’s in so many things being a vegetarian properely make it more difficult . My trans gluten test very hot I have to 

[Lynne Marie]

1 minute ago, Raptorsgal said:

Yes it will be hard. I just want to get better. I’m really trying. Not eating gluten difficult for sure it’s in so many things being a vegetarian properely make it more difficult . My trans gluten test very hot I have to 

Ah, gotcha! 😀

I am also a vegetarian. I think it is maybe a little easier for meat eaters (who could technically fill up on one more food group if they wanted to) but I can't really say that for sure. Everybody struggles. 
Good for you for trying so hard and taking control of your health. 👍🏽

I haven't been gluten free for very long (only about 7 months) but seeing how much better I feel without gluten does make it easier with time. It's still a whole bunch of work (I am struggling currently) because , like you said: it's in so many things. 

This forum is currently such a support and I am so grateful. Things are already getting better.  Today was a little bit of a setback, but in general I feel so much more possible. 

Wishing you the best @Raptorsgal!

[Raptorsgal]

Thanks good for you . You are doing so well. Just had some soup my mom made for me with gluten free bread.  I find even some salad dressing have gluten in it. 
I have anxiety I hope I can calm down soon.  What do you eat as a vegetarian I’m very low in Iron isn’t a surprise . 

[Darren]

1 hour ago, Raptorsgal said:

Thanks good for you . You are doing so well. Just had some soup my mom made for me with gluten free bread.  I find even some salad dressing have gluten in it. 
I have anxiety I hope I can calm down soon.  What do you eat as a vegetarian I’m very low in Iron isn’t a surprise . 

The emotional toll when first dealing with celiac is very hard. That's normal, so just know that. It will get better.  You will always have your guard up to stay safe, but will get used to it. You will adjust, you will be ok.

Kraft is reliable brand even though doesnt say gluten-free on label. They are good at ensuring allergens are on the label. So stick with kraft for salad dressing. I've never had a problem with them.

Generally gluten-free bread sucks, but if you toast it it's much better. You're in Canada right? Glutino seeded was my favorite there. Udi's next best. 

[Raptorsgal]

Yes I’m from Canada where you from. I think fruit ok I do check just to make sure.  Thanks an suggestion on good you like would be great 

Vegetarian of course gluten free

[Lynne Marie]

1 minute ago, Raptorsgal said:

Yes I’m from Canada where you from. I think fruit ok I do check just to make sure.  Thanks an suggestion on good you like would be great 

Vegetarian of course gluten free

Now worries, all fruits and vegetables are naturally gluten free

You only have to worry about fruit PRODUCTS and vegetable PRODUCTS which means the food having been processed and made into something else with added ingredients or in facilities that process foods with gluten. Then you have to look at labels and such. 

If you buy any fruit  or vegetable whole and unprocessed no worries. 
 

[Raptorsgal]

Thanks Lynne do you have iron issues 

[Lynne Marie]

Just now, Raptorsgal said:

Thanks Lynne do you have iron issues 

yes I have for years. I currently don't know the status though. 

I do not do well with the iron tablets (omg crushing constipation) so I sometimes I drink (terribly expensive) little water sachets to help. But I need to have all of my bloodwork done soon in any case. 

[Darren]

17 minutes ago, Lynne Marie said:

yes I have for years. I currently don't know the status though. 

I do not do well with the iron tablets (omg crushing constipation) so I sometimes I drink (terribly expensive) little water sachets to help. But I need to have all of my bloodwork done soon in any case. 

I'm from Burlington so I'm GTA born, living in Minnesota.

As for iron that's actually how I first got diagnosed. My count was low, went on pills and never increased, leading to more questions and eventually realizing celiac was a suspect, got tested and there it was.  The low iron was from malabsorption due to damaged villi in the intestines. It was odd because I felt fine and was, still am a recreational endurance athlete with no issues. It took 2 full years for my intestines to heal and celiac blood panel to show negative. So be patient it takes a long time. Make sure you have a good dr. Get celiac panel done every 6 months to monitor progress as the levels should lower if you are gluten-free. Once all the way down do it once per year it helps to know if you are still on track. Again be patient it takes time.

[LCAnacortes]

On 2/5/2023 at 1:37 PM, Lynne Marie said:

oh no 😭 

I sure hope not.

How long did it take you to realise?

All three of my kids have autoimmune stuff: kid one has lactose stuff and had some histamine thing going on (I had 6 months of chronic Urticaria and she had one episode) , kid two is allergic to everything in the air and environment, and kid three has issues with her thyroid (still sorting that out) . Basically we are cursed. 😂😭

The lactose became a question once I had eliminated most gluten and cross contamination but still had issues. I had an egg the other day and experienced bloating later.  I will be watching to see if eggs are an issue for me. So far oats are OK but I'm going to watch the brands that I buy. 

[knitty kitty]

On 2/5/2023 at 3:37 PM, Lynne Marie said:

oh no 😭 

I sure hope not.

How long did it take you to realise?

All three of my kids have autoimmune stuff: kid one has lactose stuff and had some histamine thing going on (I had 6 months of chronic Urticaria and she had one episode) , kid two is allergic to everything in the air and environment, and kid three has issues with her thyroid (still sorting that out) . Basically we are cursed. 😂😭

Do be aware that Celiac Disease is hereditary.  Lactose intolerance, urticaria, thyroid problems and increase in allergies can be symptoms of underlying Celiac Disease.  

Your children should be checked for Celiac Disease.

Your husband should be glad your "illness" is improved by a change in diet.  He should be thankful you don't need expensive medications or operations.  A gluten free diet wouldn't hurt him either.

[RecoveredCeliac]

On 2/4/2023 at 9:49 AM, Lynne Marie said:

I am still LOADS better than before when I ate gluten but I should be totally free of symptoms at this point. 

 

says who?  I'm 2 years off gluten and much stricter than you and still not 100%

[DebJ14]

• You won't be totally free of symptoms if gluten is not your only problem.  Once your immune system gets a break from spending all its time attacking gluten it goes after the other substances that you are either allergic or sensitive to.  Many with gluten issues also have problems with dairy and yeast too.  After nearly a year of being gluten-free after that first gluten free Thanksgiving I was just as miserable as I was before I got rid of the gluten.  It turned out that I am off the charts reactive to yeast, so the gluten-free stuffing did me in along with the cinnamon and evaporated milk in the pumpkin pie and the cranberry sauce.  The doctor called me just before Christmas and asked what we were having for Christmas dinner.  I said Prime Rib.  He laughed and said, " No you're not."  Beef was also on the list of 23 foods I can't have.  Once I cut all those foods out of my diet I really felt great.  I stayed off of them for 2 years and tried adding them back one at a time.  No dice on most of them.  The test was correct.  I was shocked that oysters were on the list because I never ate an oyster in my life.  Turns out it was all those calcium supplements made from oyster shells!  You need to do a deep (and expensive) dive into what else you react to, and if still having problems after that, have genetic testing done.  It took more than 2 years after going gluten-free to fully regain my health.
•  

[LisaGayle]

On 2/4/2023 at 11:49 AM, Lynne Marie said:

I stopped eating gluten late last June and enjoyed the most wonderful, symptom free summer and my body felt so so good. Six months later, I started feeling like I was messing up somewhere and had some accidental glutening. I got stricter about labels (I moved to only eat processed food certified gluten free instead of things that were usually gluten free like rice cakes and oatmeal, no more assuming, only eating certified gluten-free )

But the symptoms of low level gluten contamination continued. Its now almost every day at this point.  I feel my stomach go a little nuts every day now, I see in my "bathroom time" that things are not 100% okay. 

I am still LOADS better than before when I ate gluten but I should be totally free of symptoms at this point. 
I use toaster bags for the toaster (still considering buying my own) I have stopped using the communal convection oven (considering getting a designated air fryer) I keep all the counters and the table wiped down. I haven't bought new pots, pans and everything yet, because it just seemed ab bit insane to have complete separate kitchen stuff (and also: money) Is that where this is going!?!?

My gluten eating family LIVES HERE. There is gluten here. I can't change this. I am totally stressed out about where it's coming from. Constantly checking everything. 

I was out for the day yesterday and I didn't prepare any food in my home for me to eat, and also didn't feed or take care of my two dogs (so they didn't get training treats or food from me) I  ate gluten-free food /snacks straight from the original packaging (cheese, fresh veggies, gluten-free rice cakes etc) Guess what happened? Nothing. I had no symptoms that day. Just a tiny bit of the gurgles somewhere in the evening (mind you, after being back home)

Today I was keeping an eye out for contamination. Feels like gluten is everywhere. I noticed that when I fed the dogs 20 minutes later, my stomach is protesting. I literally only opened the food bin, scooped the food into the bowls and then washed my hands.
I have long been suspicious that dog food and dog treats could be an issue ( I train the dogs a lot, because one is also a puppy and my jacket is full of kibble and snacks. The food is on everything, including my gloves and all my gear) 

I am so bummed. I feel like I will never things under control. I just want to cry. Cutting out gluten from my diet is doable and fine. But cutting it out of my life seems impossible. I can't even believe such small amounts of gluten could even do this (how!?!?) 

I would appreciate any words of encouragement, commiseration or tips. I am at my breaking point. 

I feel for you, sis! I'm gluten-free, dairy free, corn free, soy free. It's horribly frustrating; I mostly cook everything from scratch. I'm trying to get away from processed food altogether; some places tell you their stuff is "made on shared equipment"; others don't. It's trial and error.

[RecoveredCeliac]

certified gluten free packaged food is perfectly fine

it could be other allergies making you feel sick especially if your antibody levels are normal