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Living Normally While Battling Celiac Is Like:


1desperateladysaved

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GFinDC Veteran

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise. :)

Gorilla Munch cereal is gluten-free also, and Pebbles too.


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kareng Grand Master

 

I have turned into some what of a Super hero.  A secret identity :ph34r: (here on the forum), an arch enemy :rolleyes: (gluten), doing good deeds :) , and other super human feats :wub: disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!? <_< Note to self~ get some James Bond gadgets.  Those could come in handy. :P

How about a fork that detects and destroys gluten on your plate? A watch that tells you the wait time at PF Chang's and the closest gluten-free cupcake?

gatita Enthusiast

Oh, I want that fork!!

mommida Enthusiast

Those are the gadgets I'm talking about! ;)

Luv2teach Rookie

Thanks for the support, feedback, an positive words. I think it is extra frustrating because 1) I am also a vegetarian so my food is already limite and now many of my fav go to soy products are off the table and 2) I had NO symptoms prior to diagnosis so its not like I have the motivation o feeling better and, on fact, I am now having severe gastrointestinal issues ever since I stopped gluten so I feel worse than ever. Grrrr...I'll be ok though...just super frustated

mushroom Proficient

Sure sounds like a truckload of bird$#*@ just landed in your nest :unsure:   I hope a good spring cleaning soon has you feeling chirpier :D

designerstubble Enthusiast

Thanks for the support, feedback, an positive words. I think it is extra frustrating because 1) I am also a vegetarian so my food is already limite and now many of my fav go to soy products are off the table and 2) I had NO symptoms prior to diagnosis so its not like I have the motivation o feeling better and, on fact, I am now having severe gastrointestinal issues ever since I stopped gluten so I feel worse than ever. Grrrr...I'll be ok though...just super frustated

I'm veggie too :)

Recently: (ie. since gluten free)

Allergic to eggs

Allergic to citrus

Allergic to pumpkin seeds

React to quinoa

Intolerant to dairy

Super intolerant to corn

Intolerant to soy

Sugar free

Caffeine free

Cigarette free!!

My food probs are incredible since diagnosis, corn reactions almost worse that gluten?!

I only eat fruit and veg. And rice. I manage to tolerate a very little butter. I dream of food.

Last night I dreamt that I drank a lovely latte coffee, sweet and frothy. It was luscious.

I awoke in a panic thinking I'd actually had it as it was so vivid.

I drink red wine now... probably not a good idea really, but can't help it as I feel so deprived. Or should that say depraved??!!! Might try and cut down soon as I started getting gut pain again.

Am considering fish (am veggie of 26 years) but thought of it makes me wanna vom, and I worry about introducing something my body no doubt will freak out over, something else to get allergic too?

It's not easy. But I must admit, food I thought boring and plain have now become delicious! And full of flavour? It's so strange. My taste buds are overwhelmed by things like a homemade veggie soup! Mmmm!

It honestly truly does get easier!! :)


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Welda Johnson Newbie

I can understand how desperate you might have felt during your times of transitioning to a gluten free diet.  I've been gluten free since 2000 and also had to eliminate all milk & dairy products, meats, etc., so am now vegan.  It used to really bother me when people were not accepting of my sometimes futile efforts to get this disease (and I also have asthma, gout & rheumatoid arthritis) under control.  I would get so angry at times that I would stay home rather than go out to social events.

 

Now, 13 years later, I have learned that it is usually because most people have no idea about what celiac disease is, or food intolerances, or diseases that you can't readily see, so they simply respond without having any knowledge of what we are going through.  I used to think that if I went to a family gathering or a social event, the person putting together the party would remember that I could only eat limited items.  That didn't work!  Finally I began taking along foods I liked and could eat, even to restaurants, and that solved all those problems, and allowed me to have fun, rather than being angry.  Sometimes my food was better than what I was seeing being served. 

 

I also bought tests from Enterolab for my immediate family members, since celiac is a genetic condition.  The one person who proved to have celiac hasn't made any dietary changes, and has experienced thyroid cancer and colon polyps which were thought to be cancerous, conditions which I've read can be a result of celiac disease.  Thank God it wasn't colon cancer.  BUT, now, nine years after those tests, some family members are getting tired of stomach aches, rashes, serious illnesses, and are beginning to change their diets.  Sometimes progress takes longer than we would hope for, but I am gratified to have been doing the best I could to help others.

 

This disease makes one less of a "people pleaser," and a stronger, more vocal individual.  As you're sitting eating the delectable meal you brought along, in a group, someone always notices and makes a comment.  Now I can smile and be happy with what I've brought.  One of my challenges for myself is to find as many new products as possible, each and every day.  I read every ingredient on every label that I think might be a "new find."  I float on air as I'm leaving the store, satisfied that my search has been fruitful and successful. 

 

Be kind to yourself.  Experts say that one out of every 133 Americans has gluten intolerance, and, believe me, there are tons more gluten free products on the market now than in 2000.  We ARE making progress.  Watch for the changes and you will certainly see, and most likely, you "went the extra mile" to make those changes happen.  Best wishes.  Welda 

cavernio Enthusiast

Designerstubble, I'm not vegetarian, but I think that healthy people who are vegetarian/vegan are doing the right thing. But the more restricted diet becomes, the more worried I would be about restricting my diet so much.

If you're considering trying meats, but the thought of eating fish disgusts you for ethical reasons, you could try things that are well, much dumber on the scale of animals, like clams, oysters, scallops or snails.

designerstubble Enthusiast

Designerstubble, I'm not vegetarian, but I think that healthy people who are vegetarian/vegan are doing the right thing. But the more restricted diet becomes, the more worried I would be about restricting my diet so much.

If you're considering trying meats, but the thought of eating fish disgusts you for ethical reasons, you could try things that are well, much dumber on the scale of animals, like clams, oysters, scallops or snails.

Thanks Cavernio... To be honest, although I very much prefer to not eat any flesh, I would consider eating anything to make me better. The worry I have is that I have SO many NEW allergies and intolerances since being gluten free that I am petrified of introducing a new food at this stage. I don't know at this stage if my allergies are real allergies (Ige) or if they are intolerances because of perhaps the state of my immune system or perhaps I have leaky gut?? So I stress out just eating my normal food as it seems every 2-3 weeks something else gets knocked off. It's a tricky time and to be honest the truth of the matter is I actually don't know what to do anymore so have decided to give my poor brain a rest and just chill for a few weeks!

It's exhausting! :) I am very much hoping to get some foods back one day... Especially cheese. And seeds. And and and! :)

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    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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