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ReneCox

So Sick Of This

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ok I just need to vent for a second...I am sick of feeling like crap 247! i have been on this diet for almost three months. I eat ONLY grilled chicken, grilled fish, bananas, avocado, carrots, black coffee, and very rarely nuts or apples or watermelon. I take gluten-free vitamins. I use garnier Fructis shampoo. All my cosmetics are gluten-free. i use paper plates and plastic silverware and have my own pots/pans. Do i feel better? NO!!! The only difference I have seen is the first normal looking bm for a few days straight in two years...but now its back to D and C and horrible bloating. I don't ever want to hang out with friends or do ANYTHING because I feel like crap. The only way that I could still potentially get getting glutened is from my job(waitress...flour always in the air, im always touching gluten). I just quit that job yesterday. Im just so tired of eating hardly anything and still feeling like CRAP! I just want to cry...or die. I don't think I'll ever feel better...sorry for rambling..im just so sick of being sick at 19

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I totally understand - maybe it was your job and always touching gluten (it's bound to find a way into your mouth), but have you tried giving up coffee, or switching to decaf? I found that coffee is one of the things that have been giving me D - I switched to decaf (only drink it about once every 2-3 weeks anyway) and no problem. I've heard a lot of people say coffee "gets things going" in the morning (the D). :)

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Rene,

I'm going through the same exact thing you are right now, so I completely understand. I'm only 22, and have no life whatsoever. I've been at this for 7 months now, and the results so far are less than desirable. I just try to remember that it is a very slow healing process. Some people just START to feel better after a year. You'll see in a lot of literature that symptoms will clear up after 2 weeks, but this is a complete load of bull, for most of us anyway. I thought that I could do this all on my own, but I have finally broken down and I'm going to see a nutritionist next week. I'm also going to make an appointment with a gastroenterologist next monday. Maybe it would help you out to do the same, if you haven't already. But I just wanted to let you know that you're not alone, if that helps at all. Hang in there.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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I agree with D. Coffee is a gut irritant and your gut is never going to heal and absorb if it has to evacuate every time the coffee is expelled from the stomach into the small intestine. Sorry but you can google it. It is true. :ph34r::unsure:

Flowergirl


Gluten intolerant - self diagnosed 2007 (not willing to do gluten challenge) and anemic

no dairy, soy, legumes, eggs, sugar, chocolate

no baked and processed foods (also gluten-free bakery) and high GI (due to hypoglycemia)

enjoy brown rice, buckwheat, quinoa and polenta instead

neurological symptoms flare up when glutened and in times of stress

following paleo diet, lots of raw fruit and veg, omega 3 oils, nuts

I feel heathy and able to function for the first time in my life. Thank God.

Organic food gives a great advantage.

Kefir rules!

On a mission to get rid of Candida overgrowth after a stressful event dropped my immune system. On a strict anti-candida diet using herbs and natural remedies. No meds or drugs to make it worse thanks.

http://www.gilbertssyndrome.com/candida.php

http://www.candidasupport.org/candida.html

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I'm just going to re-iterate whats already been mentioned.

Coffee = big time gut irritant.

I'm not saying this is gonna solve all your troubles but its definately a step in the right direction.


Rachel

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THE KEY IS TO STAY POSITIVE, I HAVE BEEN UNDER MY BLANKETS FOR A YEAR AND I AM NOT DEAD YET EVERYONE TELLS ME IT TAKE'S TIME I AM GLUTEN FREE FOR 6 WEEKS NOW.I'M IN THE TOILET 247 ALSO AND ACID REFLUX IS A PROBLEM FOR ME.TRY NOT TO GET DOWN YOUR NOT ALONE,MY WIFE AND DAUGHTER ARE IN CUBA AND I SIT HERE AT HOME SICK.A BIOPSY MIGHT SHED SOME LIGHT ON THE PROBLEM ALSO,I GO FOR MINE IN APRIL . STAY GLUTEN FREE AND KEEP SMILING

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thankyou everyone for the replies. Do any of you get D and gas from nuts? every time I eat peanut butter or any type of nuts I get these symptoms the next day. I guess I shouldn't eat them...but I've already narrowed down my options so much..im running out of food ideas

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There's a lot of fat in nuts, which can be problematic if you are having trouble digesting fats, as many recovering celiacs do. Another possibility is that you have an intolerance to peanuts, or other nuts. In that case, the problem won't go away even after you heal. You could try different types of nuts individually, and see if it is a certain kind, or if it's just all nuts. That might help you narrow down the problem.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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thankyou everyone for the replies. Do any of you get D and gas from nuts? every time I eat peanut butter or any type of nuts I get these symptoms the next day. I guess I shouldn't eat them...but I've already narrowed down my options so much..im running out of food ideas

I dont get D...I do get gas and a host of other very unpleasant symptoms including headache, reflux, bloating, joint pain, etc.

Peanut butter is by far the worst....last time I had some peanut butter not only did I have the other symptoms but I burped non-stop for more than 12 hours. It was pretty gross. <_<

Anyways, in my case its an issue of mold. I have major problems with molds/fungus and nuts are full of them....especially peanuts.


Rachel

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I'm so sorry how frustrating this is! I hear you!

After being dairy and gluten-free for three months, I'm starting to drop out other things -- soy, corn, rice, potatoes, sugar, etc. The week after I went gluten-free everything was back to normal, but then the symptoms all came back.

I realize i've been eating a lot more nuts and chocolate since going gluten-free though and maybe the nuts are a problem.

And of course I've been eating a lot more eggs.

I mean, what's left after you take out all that other stuff? Meat and vegetables? I can't quite bring myself to have dinner for breakfast yet, but maybe I'll try that now!

Best of luck to you! Keep writing!

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ok I just need to vent for a second...I am sick of feeling like crap 247! i have been on this diet for almost three months. I eat ONLY grilled chicken, grilled fish, bananas, avocado, carrots, black coffee, and very rarely nuts or apples or watermelon. I take gluten-free vitamins. I use garnier Fructis shampoo. All my cosmetics are gluten-free. i use paper plates and plastic silverware and have my own pots/pans. Do i feel better? NO!!! The only difference I have seen is the first normal looking bm for a few days straight in two years...but now its back to D and C and horrible bloating. I don't ever want to hang out with friends or do ANYTHING because I feel like crap. The only way that I could still potentially get getting glutened is from my job(waitress...flour always in the air, im always touching gluten). I just quit that job yesterday. Im just so tired of eating hardly anything and still feeling like CRAP! I just want to cry...or die. I don't think I'll ever feel better...sorry for rambling..im just so sick of being sick at 19

Are you having grilled chicken and fish at your home or at restaurants? Are you using spices other than salt and whole peppercorns that you are grinding? You must only eat unsalted nuts. Salted nuts have gluten. Toothpaste?, powdered dental floss? Are you reading all labels, food and nonfood items, including hair sprays etc? Is the grill that you are using a designated "gluten free only" grill.

I am certain the gluten inhalation at work was a significant exposure for you. You may be getting too much exposure just walking down the bread isle or through the bakery at your grocery store.

Kissing or sexual contact with someone who is not gluten free, I am certain, is an underappreciated risk. If you have house pets, you have gluten exposure handling their food or being licked by them. What cosmetics do you use? Is your home gluten free?

You should be checked for autoimmune thyroiditis. Your thyroid functon may be normal, but you may have an immune reaction going on against your thyroid which is making you feel poorly. Have your doctor check your blood for thyroid peroxidase antibodies, thyroglobulin antibodies, TSH and T4.

Are you allergic? Watermelon and banana cross react with ragweed. So, if you are allergic to ragweed, you may be having symptoms from banana and watermelon. Ragweed grows predominantly in the midwest and east. It pollinates at the time children go back to school. If you have end of summer "hayfever" or colds, you probably are ragweed allergic (if you live in the right areas)


glutenggirl

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Rene,

I am so sorry to hear of the tough time you are going through. Its sad that so many of us can emphathize with you....but we most certainly can. My undx'ed Celiac started at age 22. It is so frustrating!

Couple things: you might want to have your doctor repeat your full Celiac panel, to see if you still have elevated levels. This can at least shed some light. I also think its good that you quit your job....rarey do I get glutened, but the last time I was, I had made a gluten filled treat for my hubby. I don't know how I was glutened, but I was.

If your bloodwork is normal, and your health doesn't improve after quitting your job, I think it would be worth it to see a doctor to examine other options.

Best of luck to you, and I hope you find some answers!

Laura

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Rene, it's a real bummer for you to be sick so much. I think Laura is correct, if, after checking for all gluten sources, you are still so sick, you need to explore other possibilities. The first thing that comes to my mind is other food allergies, especially dairy or lactose intolerance (a common problem for celiacs because of the damaged villi).

I don't know if this would be at all helpful for you, but one of the last things I've done that has resulted in completely eliminating D has been to take L-Glutamine. It is an amino acide that helps reduce intestinal inflammation.

Salted nuts have gluten.

I've not heard of this - maybe some specific brands, yes, - but ALL salted nuts? Can you expand on this a little?


Valda

Enterolab results: ...two genes for gluten intolerance ...casein intolerance

other sensitivities: corn, eggs, soy, potato, tapioca

Hypoglycemic

Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)

Living a healthier, happier life.

-------------------------------------------------------------------------------------------------------------------

If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

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Yeah I didn't know all salted nuts have gluten. I know dry roasted ones ususally do but what about sunkist pistachios in the shell..they are roasted and salted but it didn't say anything else about haveing gluten? Anyone know if they do??? also, again thankyou so much for hte replies. They are really encouraging and really mean alot to me :)

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You can't say that all salted nuts contain gluten--some may, but certainly not all.

For instance, Planters will list any gluten ingredients on the label. If you are in doubt about a particular product, it's always best to call the manufacturer.

I know that Fisher Roasted Salted Almonds are gluten-free. I confirmed that by phone. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Thank you, I was going to mention that not all salted nuts contain gluten. I also have always drank coffee, I went decaf after Thanksgiving for my neuropathy and have not noticed any change at all--neuropathy to celiac. I also have always used peanut butter, it is the one thing that has been a staple of mine for the 5 1/2 years of being gluten free--there is no gluten in Jif, Skippy, Peter Pan--for that matter, most peanut butter has no gluten--it could only be a problem if you can't have nuts.

Kissing or sexual contact with someone who is not gluten free, I am certain, is an underappreciated risk. If this were true, celiac's could only marry or live with celiac's. This should not be a problem as long as the person eating gluten and the gluten-free free person are careful. Kev always tells me if he has eaten gluten before kissing me, he is always very careful with me. Sexual contact is also safe, to the best of my knowledge, there is no gluten in sperm. I have never been glutened by kissing and I do not ever plan on giving up kissing or lovemaking nor will my sister who has been gluten-free for 6 years next month and is married to a man who eats gluten.

I think you must be getting gluten in some way, maybe it was job related. Or, maybe you have developed another intolerance along with gluten. I have several other intolerances. I wish you luck.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I eat ONLY grilled chicken, grilled fish, bananas, avocado, carrots, black coffee, and very rarely nuts or apples or watermelon.

I agree that nuts and coffee could both irritate your digestive tract - doesn't Starbucks have tea?

Have you tried other foods that tend to be easily tolerated? Things like lamb, kiwi fruit, sweet potatoes, cooked fruits like applesauce, and squash might help add some nutrition without upsetting your system more. Your diet isn't too well balanced, which might be adding to why you feel sick.

Are you intolerant to all grains and starches?


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Yeah I didn't know all salted nuts have gluten. I know dry roasted ones ususally do but what about sunkist pistachios in the shell..they are roasted and salted but it didn't say anything else about haveing gluten? Anyone know if they do??? also, again thankyou so much for hte replies. They are really encouraging and really mean alot to me :)

My husband and I callthe 800 #'s on the packages of food. The only time I had a gluten accident was when I was craving pesto sauce really bad. I read the ingredients and all it said was basil, pine nut, olive oil and garlic. It was a FRi. afternoon and I left a mesg. The company didn't call back, so I ate it anyway...Ended up in bed for 4 days not knowing which end something was going to come out. Mon. the com. called and told me not to eat it. Too late... They also didn't have any allergies listed-that should have caught my eye, but I was on a mission to have pesto pizza (w/ gluten-free crust). Never again.

I am also very sorry you are so down-please don't say die though. I know how you feel. I have been sick for years and then 18 months ago I woke up walking like a drunk, slept for more than 20hrs. a day, had no memory (still don't), headaches 24/7 for ~3 months and I am forgetting a crap load of other symptoms. My doc's told me to exercise, eat better, mediatate, your getting older, stop caffeinne, increase fiber (so I bought all 100% wheat of whatever I could)... 9 months later after an ER vist and a reluctant GI (who said he wouldn't find anything if he did a scope)-gastritis, duodenitis and celiac disease was what was found.

Iv'e been gluten-free for 10months and I have barely improved. My Celiac specialist said it could take up to 2 years to heal. My #'s are normal except for tTG is still elevated. My daughter was dx'd after me and she has stunted growth(6 y/o 33 lbs. and ~38" tall, bone growth under 5 y/o). She hasn't really shown any improvement and has been gluten-free since July.

It takes a while...It really su---!!!!!

Take care,

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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If roasted and/or salted nuts had gluten in them, wouldn't the ingredients have to say that in some way? Or is it cross-contamination in the factory where they are roasted and salted?

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If roasted and/or salted nuts had gluten in them, wouldn't the ingredients have to say that in some way? Or is it cross-contamination in the factory where they are roasted and salted?

Not all the companies do unfortunately, that is why it is best to call the company. I think I wrote about my pesto experience - the jar did not mention any allergies whatsoever, so I ate it and was sick for ~4 days. The company called back and said quality control said I should not eat it - too late

We have had a lot of luck with calling. All the big companies are aware.Sometimes when I call a company they will say their product is gluten free BUT they can't guarantee the flavorings are gluten free or if there is cross contamination. If this happens I just don't eat it.

Also the law says as of 2006 they have to add wheat as an allergy but it does not tell them they have to remove the products that are already on the shelves. By 2008 they are supposed to label Gluten free on whatever is.

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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