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mela14

I Am Offically Gutenized! And Going Off The Deep E

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OK.this is officially a venting session. I finally moved from Florida To NJ yesterday and arrived at my house with workers doing some kitchen work. The stove and frig were unplugged and moved out of the kitchen. i was starving and decided to get something to eat. I went to Wegman's and got a rostisserie chicken. I had it there 3 weeks ago and had no problem. Well....welcome to NJ! After speaking with the cook behind the counter, I was told it was absolutely plain...nothing added! on the label it said "whole chicken" ...no other ingredients! there was also BBQ, Garlic, and Lemon Pepper flavored chicken but of course did not even consider or look at them! I was able to microwave a sweet potatoe with it...as it was not unplugged. I thought I stuck gold and ravenously ate my food!

That was the beginning of the end! A half hour later it hit. I was sick as a dog and spent the entire evening crying in the bathroom. My gut was raw, swollen and in pain. I got a migraine as well and then spent the entire night moaning in bed "I feel sick" It actually turned into a sing song type chant. Sometime during the night the muscle pain kicked in and felt like I had been poisoned!

It took every ounce of strength to get out of bed. I couldn't move. I had a banana for breakfast which was ok. Around 11:30 I was hungry again....and decided that with nothing in the house and no stove I might as well eat the rest of the baked sweet potatoe. An hour later I started to feel that it didn't sit right and it got worse all day. I needed to eat so I finally got out to my sister's who made me a grilled chicken breast. It was fresh...no problem there. It was cooked with a little olive oil and salt and I had a slice of fresh tomatoe with it. An hour later the pain started to return.... and the bloating was acting up again. It's now 4 hours later and my gut is raw and swollen again and the migraine is back.

yesterday, i wanted to slit my wrists..today I am just disgusted. I feel sick and hopeless. maybe I should just never eat again. I don't know what to do anymore. It seems that the slightest thing sets me off and then I am ruined for days on end.

How do you guys get to the point that you can actually eat without pain?

this gluten is destroying my life! I don't intentionally eat it and have been avoiding it all together or so I thought. I feel awful. I feel like I swallowed poison....and my body feels toxic. All I want to do is lay down and sleep or rest. Of course with moving it's not the right time but I just can't do anything..I don't care if the boxes just sit all around me!

I think i am going to need to see the dr this week. I consulted with a new GI

3 weeks ago when I was in town. Somebody has to help me figure this out. I am overhwhelmed and can't seem to get it right! i dont want to live in this AGONY anymore! this morning I woke with tears and tonight I wll go to sleep the same way.

I feel sick! It's official. I have no sense of normality anymore. I think I crossed the line between hanging in there to just hitting bottom! I am non functional.

This week my husband and I are supposed to set up our office as we moved our business too. i will not be able to help with anything and it angers me. Friends and family want to see me but I am too sick to even talk with them on the phone.

What should I do! I know the GI dr is going to want to do a biopsy. Do you think it would show anything?...given the fact that I have been trying to be gluten-free for 3 months and have been having all these accidental ingestions? I really feel that everything is raw inside. I don't know what to think anymore. maybe the dr will put me on baby food for a while...gluten-free baby food....I don't know what to eat or what not to eat but I am sooooo hungry and don't feel satisfied or nourished.

My husband thinks that everything is so irritated that no matter what I eat now is causing me pain. Maybe there is too much stomach acid. I don't know what to think anymore.

I hate my life...........

I told you guys this was going to be a venting session.

I want to hide from the world.

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Mel,

Don't give up! We've all been there and we are here for you.

To be honest, when you ask how we do it I will tell you: I don't eat out. I buy my groceries at Whole Foods ( I have to drive 45 min there but I do it once a week), and I cook, cook, cook.

And this coming from someone who although I am good at it, hates to cook. I used to eat out 3-5 times a week. I NEVER buy prepared food anymore. If I am really in need of food quickly, I eat a frozen Amy's or a peanut butter and jelly sandwich (gluten-free of course).

It does get boring...for example, I had to work 4 16 hour days in a row this past week. I had to bring my lunch and dinner to work and I was sick of frozen meals. BUT the trade off is, I was able to work long hours and feel GREAT.

today my hubby and I had to go out (our house is for sale, and you need to leave for the open house.) I had to sit in a restaurant and watch him eat. It was torture, but after we left I certainly wasn't sick. I had eaten at home before we left.

As for the biopsy, only you can decide to do it or not. I am supposed to do mine in March, but have decided I cannot glutenize myself on purpose. Whether I have celiac disease or not, my body is healthier and happier gluten-free, and this is where I should stay. I do still have IBS that flares up, but it's nowhere near as bad as the pain I had before going gluten-free. I am going to do food allergy tests but not the biospy. It could come out negative, anyway, so what's the point? I know gluten is not good for me. So I've decided to stay off of it regardless of what the doc suggests.

Try and hang in there. I know how bad the tummy pain is, you poor thing. It will get better. I feel for you; we all get glutenized on accident sometimes and this is what we're here for; to sympathize with you.

Keep writing if you need more support,

Jennifer

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Mel,

I too know what you are talking about. I spent 3 months,

the summer of 2003, curled up in a fetal position in

bed. my husband was remodeling our old/new home

and I wanted to help him, but I felt too sick. He told me

later that he thought I had cancer. My biopsy in the fall

was neg., no damage to villi, but I know in my heart

that I have Celiac. I don't have the Celiac gene. My

doctor said he can't prove I have it, can't prove I don't.

Please don't give up! You have to go back to basics

just eat foods that are made at home. I survived that

summer eating steamed chicken, rice and veggies,

bananas and applesauce. Kind of boring but I did start

to feel better. The biggest thing to help me was totally

giving up dairy. It took 14 months before I could eat

out without getting sick and even now I am leery about

it. Hope you start to feel better soon. I will keep you

in my prayers.

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Oh Mel...I feel your pain.

Last August I went out with some family members. That one meal sent me into a spiral that lasted several months. This week the last few spots on my face are clearing up. My stomach was so distressed that I was in the hospital multiple times. I went through phenergan prescriptions like they were candy trying to control it. All the old symptoms returned. It was miserable.

It does get better again. My best advice is to drop back to a liquid diet for a few days and let your system settle down again. Then add back gradually some bland and soft foods. Over a couple of weeks begin to add back simple foods that you know your system can handle. If at any point your system reacts again, drop back a level for 24 - 48 hours before trying again. If you need assistance with the vomiting and diarrhea, call the doctor and ask for it.

We feel for you. Vent some more if you need to. We'll "listen" (read, really, but you know what I mean.) Cry a lot. It may not fix the problem, but it is good for the stress of it all. Did you know that tears of joy and tears of pain or stress all contain different chemicals that the body is ridding itself of? Let them go.

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DON'T stop eating - i did - i got so depresed - it happens when you feel sick all the time - i did stop eating for the most part and my weight dropped to 115 i had to go into the hospital with heart problems and the doctor said if i don't gain weight i could have a heart attack - I AM 19! this was about 2 weeks ago so i'm trying to find joy in food again it's hard but don't stop eating b/c you could die

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Try not to get discouraged. Keep your head high :)

You're not alone. Personally, I know what it is like to feel sick ALL the time. I have been gluten-free for about 1 year now and I am still sick! I have to reserve about 30 minutes every morning for getting sick, most mornings I cannot leave the bathroom until my intestines are completely empty. Also, I feel tired and I have low energy ALL the time. I also get these "sick" episodes (sort of like you do) where I get super sick all at once with nausea, severe stomach pain, gagging, flu like symptoms and/or diarrehea. I blame it on gluten injestion but I am always soooo very careful that I find it hard to believe that I am getting glutened all the time! It's still a mystery with me.... I'm going to the GI doctor in a week.

Hope you are feeling better soon and don't have to wait much longer to feel great again.

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Carrie...it does take some of us longer than others, but for you to still be having that much difficulty after a year of being gluten-free sounds off base. Have you checked all your medications, your toiletries, and even your laundry detergent? Any chance you are really super sensitive like I am and need to replace some of your pots and pans? It would be worth a closer look to see if something is sneaking in. I can't tell how old you are from your information, but if you are married or dating someone have you considered that a glutened kiss could be the culprit if they are not also gluten-free? Tough thing to ask, but sometimes we have to here.

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Well, I have a question..without a doubt I feel better off gluten, but not I get nauseated a lot....what's the deal? I never had this nausea before....pain, yes, gas, yes, but no nausea.

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A lot of good advice here, as usual, but I want to add that when you take advice from someone about what has gluten and what doesn't, think about who you are taking it from... a worker in the grocery store is NOT someone I'd trust with my gut.

Purdue rotisserie chickens are gluten-free and I spoke to the grocery store manager and the Deli manager to be sure they don't add anything to them at my store... they don't, they just roast them.

I would never eat the sweet potatos or mashed potatos at the Deli counter, they have a huge ingredient list and even if they are gluten-free I don't want all that other stuff in them. It doesn't take that long to chop up a potato and boil it, since you didn't have a stove, nuke a baked potato.

As far as eating out.... I am forced to do it, I travel a lot and there is just no way I can carry food with me. I just got back from 5 days in Houston, I ate out every meal and was not glutened once. For dinner I eat at a restaurant with a chef not a cook, there is a huge difference and if one can't afford that there are some chain and fast food places that have gluten free menu's. But I almost never have problems at a good restaurant.

I know its not easy and you really have to think differently when you first start this..... but once you get the hang of it, its not so bad. keep trying!

susan

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Guest gillian502

Mel,

so sorry to hear you are so ill. I've been there, we all have. I would go ahead with a biopsy and endoscopy anyway because you need to be examined, whether the biopsy is positive or tainted by your gluten-free diet or not, it doesn't matter at this point. The bottom line is you are not well and could have other things going on, such as gastritis that can be easily treated with a PPI drug. Either way, you need an examination.

Judy,

I'm a little confused by your comment that you "don't have the celiac gene." Did you mean to say you DO have the celiac gene? You can't have celiac disease without the gene, or at least that's how I understand it. But by all means, if the diet makes you well, stay on it, don't get me wrong! I was just curious about that.

Be well,

Gillian

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Science has not isolated every gene, therefore, we do not know all the genes associated with Celiac. It is possible a person has Celiac with a false negative test, or possibly a different subset.

My genetic test came back negative(Prometheus Labs). MY daughter's positive for DQ2 and DQ8. How exactly can a biological mother and daughter have the same physical reaction to gluten, and not match genetically? When I questioned the results the lab won't run the test over again, because, Every test can have a 30% chance of a false negative or a false positive, and my daughter's Celiac genes could be mutations from my genes. The doctor's office said sorry you must be the patient that falls into the 2% range of non-effectiveness of the test. Stay on the gluten free diet.

Does that sound like B.S. to anyone else?

Judy, I'm not bothering with any more tests. If you look at my medical history all the asymptomatic Celiac signs are there. The genetic testing is still not where it needs to be. Don't let anyone make you think you don't need to be on a gluten free diet, especially since it helped you so much.

Laura

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Hey Mel, if you can't prepare meals at home yet, do you have a microwave maybe? Well, there's something fast, I always eat and it only takes you about 5 minutes to make. Put 2 paper towels on a plate, take a couple of potatoes and prick them all over and deep a lot of times with a fork. Then place the potatoes on the plate onto the paper towels. Put them in the microwave (papertowel still on the plate as well) and put the setting on 3 or 4 minutes. Depends on your microwave I guess. If you put them in longer, they get real mashy inside, almost like mashed potatoes. Myam, yam! And then take them out and eat them with whatever you like. Things I use with them are: Butter and salt, Kraft bbc sauce or sour cream. Real delicious and fast!

I really hope, you do get better!

Hugs, Stef

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Have you checked all your medications, your toiletries, and even your laundry detergent? Any chance you are really super sensitive like I am and need to replace some of your pots and pans?

I have a lot of my own cooking utenstils and the utensils that I share, I re-wash until they are absolutely spotless. I have also checked all my meds and they are fine. For toiletries, I read ingredients for shampoo, conditioner, face wash, and sunscreen (I hardley ever wear make-up). I never thought of laundry detergent... can it really cause a reaction?

I think there is something else going on with me, I am very careful and paranoid about gluten and cross-contamination so i don't think it is that. I have done some research and I found that I have a lot of the symtoms of pancreatitis, which has been found to be linked or related to celiac disease. I'm going to ask my GI doc next time I see him.

Thanks for your help

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:angry: I was fooled by a label today! Being newly aware of my allergy, I was cleaning out my freezer of gluten. It was around lunch time and I was looking for food as well. I figured all of the Banguet dinners were infected, but I read the labels anyway. I found one that looked to be gluten-free. The brocoli, cheese and rice one....so I popped it in the oven. While it was cooking I had a non diarrhea trip to the bathroom and congratulated myself on my steady progress.

Needless to say - within 10 minutes of eating the damn food...it was the same old run to the bathroom, but it has not lasted all afternoon. Maybe I am slowly detoxing my body and the reaction was over fairly quickly.

Is the work "gluten" hidden in other ingredients? Please advise.

Thanks,

linda

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Just want to clarify. I don't have an official diagnosis of Celiac,

my doctor won't give it to me because I don't have the "gene"

for it. He also thinks that I don't have lactose/casein intolerance.

He refused to do the York test said he doesn't believe in them.

I am in the process of doing the test myself. At my last visit

he told me to eat gluten and see what happens. Like a fool

I did and got terribly sick again, same with dairy. I was sick

for 2 weeks and I'll never do that again. I read somewhere

that 2% of Celiacs don't have the gene and I think I fit in there

and I will be gluten-free and DF for the rest of my life.

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Judy05-You can have celiac without the gene. Also 30% of people have the gene but not celiac at least yet. Does your doctor know alot about celiac or not? It sounds like my first doctor who kept telling me it was in my head. Had all the classic symptoms of celiac (which I didn't know about celiac at the time) and I was told I was healthy and normal so I changed doctors..and first time I walked in to see this guy he said I suspect you have celiac. It just shows that alot of doctors aren't very knowledgeable or concerned about celiac disease.

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Linda.... I hate to say this but I don't think you can go around eating things like frozen dinners unless you have checked the company websites to see if they are gluten free. Amy's makes frozen meals and some are gluten free but they label it right on the front of the package. There are a few companies I think that make Thai and Indian frozen foods that are gluten free and say so on their web sites.

But in my estimation, very few "mainstream" frozen foods will be gluten free and even if its not on the label the issue of cross contamination is there.

Once you get the hang of this its not hard but I'd never eat a prepared or packaged food unless I checked it with the company first. Sadly reading the label isn't enough.

Susan

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Thanks Kaiti,

Yes, my Dr. knows a lot about celiac disease, he is a professor at the

University of Pittsburgh. He prides himself on having

diagnosed 200 celiacs in the past 2 years. That's why I

don't understand why he won't give me an official diagnosis.

I will always be grateful to him for testing me after being

shuffled around from different doctors. I really don't need to

keep seeing him except for the yearly scopes to check on

my esophagitis. I had so many of the symptoms and

have responded well to the gluten-free diet. All I lack is the gene,

there must be other genes out there that they don't know

about.

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Two weeks ago I had agonizing pain I could only trace to plain chicken breast. I'm convinced they inject it with broth (which can have wheat) to increase the weight and/or the juiciness. I now only buy organic chicken even though it is expensive.

I've decided the next time I have a gluten reaction that includes severe pain (as opposed to less terrible episodes of "just" diarrhea and extreme fatigue) I'm going to fast (maybe juice fast) for 24 hours. My theory is the intestines need to rest from the assault; they need time to heal. Not eating for a day won't kill me as long as I have water/other fluids. When this happens again, I'll report here how it went.

I'm also concluding that my intestines don't like amaranth either. I think it gives me the same bowel abnormalities and tiredness as a lesser gluten reaction. I also suspect sorghum which rules out Bob's Red Mill gluten-free Cereal which I like.

So far buckwheat, corn, teff, and quinoa seem OK. Even so, I'm seriously considering following the advice in "Dangerous Grains" and eliminating virtually all grains. It's a difficult step!

Processed food on the whole--I'm getting more and more away from it. I'm going to work on ways to make eating whole foods simple for myself. I have a dehydrator I should learn to use more effectively to carry food when travelling etc.

All of this is to share experience on difficult gluten reactions and my own plan for coping!

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Yes, some of us react even to laundry detergent. In our family, we are DH as well so that may be the reason. At any rate, not just any detergent can be used here.

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I have read from scholar.google.com research that 5% gene negative people with symptoms have Celiac Disease. Trust your GUT.

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Also,

Keep a journal of what you eat.

Make a note of when you feel good and when you feel bad.

You will be able to look back and determine which foods are ok for you.

Just some friendly advice...

Bronco

p.s. Don't ever trust ingredients on a package. If you have to know, bring your cell phone with you to the grocery store and call the companies when you are holding the package in the store. Either that, or write down the company's website while you are at the store and check on gluten-free content later online.

p.p.s. Whole Foods Market, Wild Oats and Trader Joe's ALL have gluten free lists on their websites for their grocery store. These are "MUST-HAVES" for all Celiacs!!!!!!!!! They make your life much easier.

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Hey guys,

thanks for all the responses. I've been checking my email every day and didn't get any reponses so I didn't bother to come to the website to see if there wre any. For some reason the responses did not come through on my PC and I haven't been using my laptop where they DID come through. I guess I have to check the Internet OPtions to make sure that it's allowing emails form this website.

Anway, thanks for all the well wishes. I have been watching my diet and actually had baby food for a few days. I still continue with some of them. I have been able to add a few things.

I HAD been eating baked potatoes .....as the micorwave was working... but I think that after being glutenized my gut was so raw that any little thing set it off. That's probably why the nuked sweet potatoe did me in too. anything I ate did me in. Slowly my gut is starting to feel a little better. I have to be very careful. The thing is that I feel totally weak and malnourished....no matter what I eat. Yesterday I spent the day eating. I was soooooooooo hungry. I ate every 2-3 hours and still DID NOT feel nourished. My heart is still racing and I am so lightheaded. My muscles hurt and feel very stiff. Especially in the morning. I can't seem to muster up the strength to do anything. I've also been having a lot of migraines.

After speaking with the pres of celiac.org......she was on the phone with me for 64 minutes last week when I had that crisis I had a little more direction. Today I am seeing a dr that she referred me to for a 2 hour consult. She is an MD, Naturopath and Homeopath. Maybe she can help me to feel more noursihed.

AS for eating gluten for a biopsy...that's not going to happen here. I know how sick I get from eating gluten...I won't do it for the biopsy. i will have to discuss that with the GI dr. I may do it just to rule anything else out....but I won't eat gluten!

Yesterday, at the recommendation of the celiac.org pres I had Pacific Rice milk. It does not have Barley enzymes so I thought it would be safe. I had a few ounces of it as a drink last night. Big mistake! Within 20 minutes I felt sick. My gut was rumbling and in such pain for hours. It still is this morning. I know many of you have commented that carrageen, an ingredient may cause problems. it's also in soy. I'm thinking that it's just the whole grain brown rice....as it has done it to me before. I cannot eat brown rice so perhaps the beverage is doing me in to. any thoughts? I've been having Beechnut Baby rice cereal and there has been no problem with that all week, I think that the cereal is not made for the whole grain. It just says rice flour.

So, that's it for now. It was so encouraging to see all your responses. I wish I would have checked the website sooner. I thought that I might have gone overboard with my venting and that no one answered. I don't want to be a problem or a cry baby.....so I just withdraw into myself. It's good to know that you guys were here.

This is really hard but I am trying to stay more focused. I hope this dr can help today. I feel ready to collapse. something is not right. Maybe I am not absorbing nutrients. That's surely how it feels. I'm going to try to keep eating more too.

Hope all of you are doing ok and .....THANKS!!!!

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Hi,

Just wanted to say that I also know how you feel. I was sick for 4 months not knowing what to eat. I went to baby food for a little while. I had so much pain when I ate, that I just stopped eating for a week. Doctors didn't help much. I lost 20 lbs. in that time. Every time I added wheat back to my diet, I would get worse again. I can't eat potatoes, sugar, fruit, soy, diary and others without pain even now. I started looking for the answers, and found a book at the library about the PH of foods. That helped me to learn which foods caused acid and problems in my stomach. The only foods I could eat that didn't give me trouble were raw veggies - so I eat lots of salads. Cucumbers and carrots helped. I drink almond milk. I eat lentils, garbanzo beans and nuts. If I eat proteins or starches I feel like I am so full that I can't put any more in there. Sugars and starches (especially potatoes) cause me to have serious acid reflux. I still have problems with constipation. I've been gluten free for 4 weeks now, and I can tell that I'm getting better. I am starting to add things back to my diet - like rice and corn. I can eat cooked veggies now, and even had some seafood this week-end. I think I'm getting better because I can tolorate a little bit more. Finding this web-site has saved my life. I am finding all of the hidden gluten in my diet. Thanks to everyone on this web-site.

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