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Living Normally While Battling Celiac Is Like:
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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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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?

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

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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

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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

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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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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 

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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.

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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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    • So far I've had no problems with gluten-free Cherrios and I've been eating them since they started producing the gluten-free line. Generally I will have some reaction to gluten if there is contamination in the product I'm eating. But I'm sure someone has gotten a bad batch or is simply very sensitive to trace amounts of gluten. It's up to each individual to decide whether you want to chance trying them. The article mentioned by squirmingitch sheds light on the problem with anything listed as gluten-free. Contamination can occur at any point in the harvest or processing, and testing may miss it. I also eat Chex, Nature's Path cereals and have tried other brands w/o any problems. I do miss gluten-free Rice Krispies, they made for a nice addition to meat loaf, shame they discontinued the item.
    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
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