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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Living Normally While Battling Celiac Is Like:
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GFinDC    609

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    1,992

 

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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Luv2teach    0

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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mushroom    1,205

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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cavernio    9

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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    • This - I agree with all of this. I have also twigged that if oats are a problem then certified processed gluten free food is out. And I got really sick from drywall. It's such a relief to hear this as there was a time when I was feeling like an alien for thinking these things. Well I agree 99.9%. I had a skin problem, possibly DH, which got better when I gave up gluten, improved further when I gave up processed foods but it wasn't until I stopped eating dry beans that I stopped getting any flares. I am also sensitive to egg though (although that does something different to my skin) so I'm a bit a skin-reactive person. Could be worth cutting it out just to see if that helps?
    • Hi Celiac4762, The carbs I eat are sweet potato, parsnip and squash plus loads of fruit. With rice I'm ok if it's from a reputable source. Once I get glutened I steer clear of it for a month to give myself an extra break and then go back to it in smallish quantities. I have carbs once a day rather than every meal to save time. I can hear in your tone this tired, fed up tone that I recognise so well from when I get glutened. I know what it's like to dream of living in a far away gluten free bubble. I felt like that but after a couple of months (which were a hard adjustment) I got to a stage of knowing what I needed to do. Your medical background will help you methodically work out what you need to cut out and what is safe and you will get there. Stick with college. Don't let this crappy stage take that away.   The thing that saved me though over everything was finding this article: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40
    • Thanks to both of you. Ok, so I was feeling not great and went grain free for 5 weeks. Then slowly started to introduce grains. All seemed ok, then I had an issue after 3 weeks, with blood in my stool. Celiac wasn't on my radar. In fact, rice and oats are what seem to bother me most. But the Dr added on the celiac test and it was indeterminate. So I was sent for endoscopy and colonoscopy. I consumed gluten for just over two weeks, then went back to my grain free, dairy free diet. I saw my Dr this am and she said my bowels were healthy, that the Dr had taken 'several' samples and that all is well on both ends.  (No celiac, but also not H Pylori, crohn's, etc). She is running all kinds of other bloodwork, because I am still feeling terrible, and obviously the assumption I had made was that it was celiac. I'm going to stay off gluten for now, in hopes that I'll start to feel better. My GI symptoms are worse this week than they have been in ages...so something is up, but apparently I'm healthy??! I am pretty sure my Dr. would not refer me to another GI. She's not the best, but it's very hard to find another Dr. here, especially if you already have a Dr. (Canada) I am going to ask her for a copy of the report though, as well as the rest of the bloodwork she's sending me for. 
    • This is exactly what I'm wondering also.
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