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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 Celiac.com's FREE weekly eNewsletter   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
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Dee777

Frustrated, I Give Up!

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Good (?) morning, everyone.

I am a newly diagnosed Celiac patient, diagnosed January 25 of this year. A little bit of my history:

I am 47 years old, married with 3 grown children. Most of my life I sailed through with what I termed as a "cast iron stomach", able to eat anything with no gastrointestinal issues. About 4 years ago while traveling to Las Vegas with my husband and one of my daughters I became ill. The Big D, and vomiting our first night in Vegas. We drove there and I assumed that the first day on the road I got a little food poisoning. Well, I left DH and DD to sightsee and retired to our room thinking I would be better in the morning. Fast forward 6 days, to me laying on the floor of the bathroom in our room, I hadn't left the room in 6 days. Fluids exploding out of my body no matter what I ingested. DH begged me to go to the hospital, but I was afraid to leave the room and the safety of my porcelain altar.

Finally I agreed to go to a clinic. The doctor there gave me some lovely pills to slow things down, and as a perk they made me feel all dream like and stopped everything in their tracks. After receiving IV fluids I was allowed to leave with enough meds to get me home. My doctor at home did the usual stool and standard blood tests and all were negative. Things settled down. Periodically I began to have recurring symptoms, but assumed that since my nasty trip experience that my guts were just "weakened" and I would have to suck it up. After all, I was no longer a young chick!

Well, this past fall beginning in September I became very ill. For the entire month of September I could not work, I was in my bathroom. I could not leave my house. Really. It was horrid. I drank water, it came out, Niagra Falls action. The doctor did stool samples, they did blood work, they had me on three different antibiotics and Flagyl which made me want to die. Nothing worked. I took enough Immodium to ensure the CEO of the company could add a new wing on his mansion and furnish it, too.

Nothing worked. The doctor and I had a huge go-around about a colonoscopy, as there was blood present in my stools. I dug in my heels and there were some words but he won. The test was inconclusive, inflammation but no polyps etc. In December for the entire month I began to lose a half pound a day. He suggested a gastroscopy. I told him to go... well. He finally did a Celiac panel. The values were all in the high hundreds. He diagnosed me with Celiac. OK. This diagnosis I was given in late January as mentioned above. I can deal with this I thought. Better than the Big C.

So, I go gluten free. By February I am feeling great. Fabulous! The weight loss slows, then stops. This was a little disappointing, but whatever. Then last week, it started again. Last Saturday, my husband "glutened" me. I am pretty sure it was unintentional as he has been SO supportive. We were in another city, he bought some cashews and said they were fine. His eyesight is not what it used to be and he didn't see the malt barley soy flavoring ingredient. By evening I was suffering horribly... cramps, terrible.

Next morning, Big D came to visit. And nothing has been right since then. It's been what, going on 9 days and I have been so careful of what I eat and nothing is working. I am so hungry and everything is going right through me. I give up. I am drinking lots of fluids, and G2 Gatorade. I take a chewable gluten free multivitamin. I drink water. I am sooo hungry. Any suggestions? Because if this keeps up, I am just going to go to my favorite bakery this afternoon and buy a loaf of bread and make sandwiches today :) I mean, if I'm going to eat gluten free and suffer with this diet and STILL be sick, I might as well have a reason to be. Right?

I am sorry this is so long and I am so whiney. Truly I am, and I thank you for sticking with this and reading thus far... if you made it! I just needed to vent, and maybe this will give me the strength to pull off another day of this hell. But the cramps, gas, bloating and diarrhea are really taking their toll. Oh I went to the Dr. last week and he sent me for blood tests. For a lot of things, just waiting for results. Will post when I hear anything. Thanks for being here, fellow Celiacs.

Dee

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DON'T... that's all I'll say..

You are probably more sensitive now that you have been gluten free and it will take even longer for you to feel better if you poison yourself with more gluten! :o

Don't do it... it's not worth it!

That was my 2 cents worth. :)

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I know EXACTLY how you feel and must confess, after two weeks of feeling the same way, everything going right through me, and months of being diligent and still feeling crappy, I just went to my favorite restaurant this morning and had the pancakes that I gave up 8 months ago. I know it was a HUGE mistake and stupid, stupid, stupid, but I'm so over this as well. (and it was ten minutes of eating blissssssss)

HOWEVER. I'm pretty sure this is not the right choice. ;)

and I'll be paying for it for a week.

I have to say, hang in there. I found that I was only able to stomach baby food bananas. Yes, weird, but that was it for about a month. the Gerber bananas for infants. And water. then I gradually added some rice; just plain.

This diet is super frustrating....and the hunger is almost torture sometimes. because even though you're so hungry you're afraid to eat. and that's the worst part--the fear that any thing you eat is going to back fire. food is no longer your friend. and it is so hard to "get over" that.

I understand. and your story was similar to what I went through, I feel for you.

hang in there.

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Good (?) morning, everyone.

I am a newly diagnosed Celiac patient, diagnosed January 25 of this year. A little bit of my history:

I am 47 years old, married with 3 grown children. Most of my life I sailed through with what I termed as a "cast iron stomach", able to eat anything with no gastrointestinal issues. About 4 years ago while traveling to Las Vegas with my husband and one of my daughters I became ill. The Big D, and vomiting our first night in Vegas. We drove there and I assumed that the first day on the road I got a little food poisoning. Well, I left DH and DD to sightsee and retired to our room thinking I would be better in the morning. Fast forward 6 days, to me laying on the floor of the bathroom in our room, I hadn't left the room in 6 days. Fluids exploding out of my body no matter what I ingested. DH begged me to go to the hospital, but I was afraid to leave the room and the safety of my porcelain altar.

Finally I agreed to go to a clinic. The doctor there gave me some lovely pills to slow things down, and as a perk they made me feel all dream like and stopped everything in their tracks. After receiving IV fluids I was allowed to leave with enough meds to get me home. My doctor at home did the usual stool and standard blood tests and all were negative. Things settled down. Periodically I began to have recurring symptoms, but assumed that since my nasty trip experience that my guts were just "weakened" and I would have to suck it up. After all, I was no longer a young chick!

Well, this past fall beginning in September I became very ill. For the entire month of September I could not work, I was in my bathroom. I could not leave my house. Really. It was horrid. I drank water, it came out, Niagra Falls action. The doctor did stool samples, they did blood work, they had me on three different antibiotics and Flagyl which made me want to die. Nothing worked. I took enough Immodium to ensure the CEO of the company could add a new wing on his mansion and furnish it, too.

Nothing worked. The doctor and I had a huge go-around about a colonoscopy, as there was blood present in my stools. I dug in my heels and there were some words but he won. The test was inconclusive, inflammation but no polyps etc. In December for the entire month I began to lose a half pound a day. He suggested a gastroscopy. I told him to go... well. He finally did a Celiac panel. The values were all in the high hundreds. He diagnosed me with Celiac. OK. This diagnosis I was given in late January as mentioned above. I can deal with this I thought. Better than the Big C.

So, I go gluten free. By February I am feeling great. Fabulous! The weight loss slows, then stops. This was a little disappointing, but whatever. Then last week, it started again. Last Saturday, my husband "glutened" me. I am pretty sure it was unintentional as he has been SO supportive. We were in another city, he bought some cashews and said they were fine. His eyesight is not what it used to be and he didn't see the malt barley soy flavoring ingredient. By evening I was suffering horribly... cramps, terrible.

Next morning, Big D came to visit. And nothing has been right since then. It's been what, going on 9 days and I have been so careful of what I eat and nothing is working. I am so hungry and everything is going right through me. I give up. I am drinking lots of fluids, and G2 Gatorade. I take a chewable gluten free multivitamin. I drink water. I am sooo hungry. Any suggestions? Because if this keeps up, I am just going to go to my favorite bakery this afternoon and buy a loaf of bread and make sandwiches today :) I mean, if I'm going to eat gluten free and suffer with this diet and STILL be sick, I might as well have a reason to be. Right?

I am sorry this is so long and I am so whiney. Truly I am, and I thank you for sticking with this and reading thus far... if you made it! I just needed to vent, and maybe this will give me the strength to pull off another day of this hell. But the cramps, gas, bloating and diarrhea are really taking their toll. Oh I went to the Dr. last week and he sent me for blood tests. For a lot of things, just waiting for results. Will post when I hear anything. Thanks for being here, fellow Celiacs.

Dee

Hi Dee,

I so understand what you're going through. This disease is hard to deal with sometimes and we often have set backs, but that's all it is is a set back and it will be over soon. As we remove gluten from our diets, most of us become more sensitive to it and since your pretty new to the diet, I'm guessing that your intestines aren't healed yet. Hopefully after a year or two of being gluten free you might not have reactions this bad when you get accidentally glutened. But, what ever you do don't go to the bakery, it'll just make things worse for you and it will take you longer to heal. Maybe treat yourself to something else like a gluten free Betty Crocker cake (it you can tolerate it) or maybe treat yourself to it when you feel better. And the Banana Baby food sounds like a great idea! Things will get better! Hang in there! We all understand what you're going through...

Hugs! :)

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OMG...First, I am So sorry you are going through this!!! And second, I am a celiac with cast iron stomach. I NEVER had GI issues except weight loss before diagnosis. I'm what they call a neurological celiac, all my sypmtoms were nerve related...Last Wednesday I stupidly licked a spoon that I used to spread almond butter on my husbands english muffin. I have been sick ever since and it has been 6 days. Nothing is staying in, pain, nausea, I am so dehyrated...It started Wed with nerve pain in my hands, feet,tongue bone pain and now I have the added joy of nothing staying in (if you know what I mean)

This sucks SO badly...I really hope you feel better soon

hugs

ada

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Good (?) morning, everyone.

...

So, I go gluten free. By February I am feeling great. Fabulous! The weight loss slows, then stops. This was a little disappointing, but whatever. Then last week, it started again. Last Saturday, my husband "glutened" me. I am pretty sure it was unintentional as he has been SO supportive. We were in another city, he bought some cashews and said they were fine. His eyesight is not what it used to be and he didn't see the malt barley soy flavoring ingredient. By evening I was suffering horribly... cramps, terrible.

....

Dee

It is really kind of hard to avoid gluten when you are starting out on the gluten-free diet, especially if you eat many packaged/processed foods. You really need to get used to checking everything you eat. That won't always keep you out of trouble but it is a start.

If you stick to a whole foods diet for a few months you may do better. It's pretty easy to read the ingredients on a head of cabbage, a sweet potato, a package of hamburger, or a package of frozen veggies. Sticking to foods with 3 ingredients or less is a good goal. Frozen veggies with salt and water in the ingredients list for example. You shouldn't need any weird sounding chemical preservatives in frozen foods either, that's why they freeze them.

I suggest you stop all your vitamins for a week or so also. Lots of multivitamins have things like soy or casein or wheat grass etc that are not nessecarilly good for us.

Don't forget to check your tea and coffee etc for gluten.

Don't share a toaster with a gluten and gluten-free bread. or a jar of peanut butter etc.

Minor amounts of gluten are enough to keep the immune system active.

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Oh, wow......

Thank you all, for your sympathy, your caring, and sharing your stories and advice with me. I am in tears right now, this means so much! Nobody I know seems to know what I am going through. My husband just looks at me when I am curled into the fetal position with cramps and tells me it will eventually end but I see th ehelpless look in his eyes as he really doesn't know what to say or do. Truth is, there is nothing he CAN say or do, which does indeed make him helpless to help LOL

I am so lucky to have found this place, indeed I am blessed. Thank you SO much everyone. This gives me the strength to make it another day. No, I didn't go to the bakery... I was afraid to leave the house :)

I will be making my way to the store tomorrow morning though, and stocking up on the jars of baby bananas! I am SO HUNGRY! Hugs to each of you, and I hope you ALL feel better soon!!!!!

Dee

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At nine days since being glutened, the autoimmune reaction is still occuring in your intestines. It can self sustain for about two weeks. Stay gluten free. It may takea a while to heal, but give it that time.

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