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Questions About Symptoms
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hello! i have been scanning all of the wonderful posts for the past few months or so. what supportive folks you all are! I decided since I'm going to deal with celiac disease for life, I will probably need some support along the way, so, I finally registered. I have many questions..... I was diagnosed a year ago/ kind of. negative blood test. but, my endoscopy results showed "enlarged lymphocytes- possible celiac sprue". my doc. told me that I more than likely had celiac disease. i asked what else would cause enlarged lymphocytes and he said "nothing". He told me to go gluten-free for 6 months and if my sickness abated, then it was Celiac. So, I guess that was my diagnosis. I was in denial for a few months, but, being sick all the time got really annoying. I thought I could just limit gluten. But, I have found out since, that is NOT the case. Now, if I accidentally get a few crumbs on something or accidentally eat a bite of something tainted, I get REALLY sick almost immediately. The reaction is much more severe now that I have eliminated the gluten. I am wondering if anyone relates.

I want to see if anyone's symptoms are similar to mine-- because celiac disease is such a vague diagnosis-- I feel like I need to remind myself that I truly have this disease. I used to be sick all the time- bloated constantly, D, really tired, and my stomach always just hurt and was in pain.

Since being gluten-free for about 7-8 months, when I get glutened, I throw up about 30 minutes after eating. And I also get severe gas on occasion. I also get extremely tired and depressed feeling. And- nauseas. Of course, all in all, I feel 500% better than I ever did. But- when it happens- it SUCKS!

Did anyone elses symptoms change after going gluten-free?

Also-- I'm just venting now because I don't personally know anyone who can relate. But- I have always been a huge food lover (which is why it devastated me to find out my limitations). And, lately, I am so bored with my food because I'm scared to eat anything different!! I am 25 and a single professional. So, I do not take the time to cook. And, I love eating out. But all i eat now is: French Fries, Mexican tortilla chips with lots of Queso, cheese enchiladas on corn tortillas, refried beans-- and LaraBars. That's it! Oh- and puffins cereal, which I am addicted to and made myself stop for a while. I just feel like it is so hard to even TRY to order safe at restaurants. I tried being adventurous yet safe last week and I ordered a Salmon Salad. turns out the salmon was blackened and must have had something bad in the seasoning. I spent the afternoon throwing up with the WORST fish taste in my mouth!! it was GROSS. sorry to share that- but, I just have to vent to someone who may feel my frustration. I know its not healthy to eat fries and cheese all day. but, everything else is so risky w/ contamination and added secret ingredients. I am fed up!

I guess this is adequate for my first post and its mostly venting. but, if anyone took the time to read it and can relate, that would be helpful. :)

thanks

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hello! i have been scanning all of the wonderful posts for the past few months or so. what supportive folks you all are! I decided since I'm going to deal with celiac disease for life, I will probably need some support along the way, so, I finally registered. I have many questions.....  I was diagnosed a year ago/ kind of.  negative blood test. but, my endoscopy results showed "enlarged lymphocytes- possible celiac sprue".  my doc. told me that I more than likely had celiac disease. i asked what else would cause enlarged lymphocytes and he said "nothing". He told me to go gluten-free for 6 months and if my sickness abated, then it was Celiac. So, I guess that was my diagnosis.  I was in denial for a few months, but, being sick all the time got really annoying. I thought I could just limit gluten. But, I have found out since, that is NOT the case.  Now, if I accidentally get a few crumbs on something or accidentally eat a bite of something tainted, I get REALLY sick almost immediately.  The reaction is much more severe now that I have eliminated the gluten.  I am wondering if anyone relates. 

I want to see if anyone's symptoms are similar to mine-- because celiac disease is such a vague diagnosis-- I feel like I need to remind myself that I truly have this disease.  I used to be sick all the time- bloated constantly, D, really tired, and my stomach always just hurt and was in pain.

Since being gluten-free for about 7-8 months, when I get glutened, I throw up about 30 minutes after eating.  And I also get severe gas on occasion. I also get extremely tired and depressed feeling.  And- nauseas.  Of course, all in all, I feel 500% better than I ever did.  But- when it happens- it SUCKS!

Did anyone elses symptoms change after going gluten-free?

Also--  I'm just venting now because I don't personally know anyone who can relate. But- I have always been a huge food lover (which is why it devastated me to find out my limitations).  And, lately, I am so bored with my food because I'm scared to eat anything different!!  I am 25 and a single professional. So, I do not take the time to cook. And, I love eating out.  But all i eat now is: French Fries, Mexican tortilla chips with lots of Queso, cheese enchiladas on corn tortillas, refried beans-- and LaraBars.  That's it! Oh- and puffins cereal, which I am addicted to and made myself stop for a while.  I just feel like it is so hard to even TRY to order safe at restaurants. I tried being adventurous yet safe last week and I ordered a Salmon Salad.  turns out the salmon was blackened and must have had something bad in the seasoning. I spent the afternoon throwing up with the WORST fish taste in my mouth!! it was GROSS. sorry to share that- but, I just have to vent to someone who may feel my frustration.  I know its not healthy to eat fries and cheese all day. but, everything else is so risky w/ contamination and added secret ingredients.  I am fed up!

I guess this is adequate for my first post and its mostly venting. but, if anyone took the time to read it and can relate, that would be helpful.  :)

thanks

<{POST_SNAPBACK}>

From what I understand, even french fries are safe, unless they are totally done in a separate fryer that has never had anything glutenous in it etc. I am not diagnosed celiac, yet. However, I have the pains in the stomach and abdomin and some other nasty things. I didn't know when I had the blood test that I had to not be gluten free until after I had the test. After this weekend I go gluten free. I myself wonder about how accurate the blood tests are and here no specialist with do the other tests unless you show positive in the test. So far I show gluten intolerance but I knew that one before. However, do check out the recipe section, you may start cooking and some of us have lots of recipes.

Now these great people here encouraged me to get into contact with the Celiac association in my city and I have. So now I give you the same good advice they gave me, find them.

It is amazing how alone you can feel with some of these things.

:)

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Now, if I accidentally get a few crumbs on something or accidentally eat a bite of something tainted, I get REALLY sick almost immediately.  The reaction is much more severe now that I have eliminated the gluten.  I am wondering if anyone relates. 

<{POST_SNAPBACK}>

My symptoms are much more noticeable now. I dont know if they are more severe because prior to the diet my symptoms were all a blur...I felt pretty crappy everyday and just stayed in bed...had no energy. I was on disability for 2 years. After going gluten-free I definately have my energy back (although not 100%) but now I get hit hard with symptoms when I am glutened. It takes a couple weeks for me to recover. I think after eliminating gluten our bodies become more sensitive to it...it really is toxic for us and the symptoms are definately a reminder of that.

My symptoms are different from yours...I don't really have many intestinal symptoms.

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I haven't been gluten free long enough to feel the affects of being "glutened", but I know about fearing secret ingredients. I find myself not even trusting ingredient labels! I also have DH (skin disease from gluten), and last night I broke out, which means I probably ingested some gluten. But I can't figure out where from. Maybe my husband at a corn dog, then wiped his hands on the dish rag, then I used it and got some residue on my hands? I am paranoid to even let my food touch the counter since it might not be clean enough. My mother-in-law is taking us out to dinner tonight and I'm so nervous! And I know I'm going to feel like a bother to the waitress!

Here are some ideas for meals:

Chilli & cornbread (Stagg chilli, Cambells Chunky chilli, or Dennison's and you will have to search for the cornbread mix-I did find one that was gluten-free after looking at every label)

Fish

Stir-fry (La Choy soy sauce or teriyaki)

Healthy Choice makes a frozen entree that is gluten-free. Chicken enchiladas.

Baked Potato with salad toppings

I'll try to think of some more.

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My husband also had negative blood work and a positve biopsy. He tested with Enterolabs later and had a positive IgA, Gene Test positive for DQ2 & DQ1, & Casein Intolerant.

His symptoms when glutened got worse after going gluten free also. I think that is very common.

His symptoms are nausea, bloating, belching, and extreme fatigue.

Hope you are feeling better soon.

Jennifer

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Hello,

Welcome! This is a great support group.

I have been on a gluten-free diet for approximately 20 months, and my symptons are much more severe now when I do ingest gluten. I start to feel nausea in 15 to 20 minutes and then the stomach pains begin. I can't vomit since I have had surgery for Gerd, so I just have dry heaves. I bloat until I look six or seven months pregnant, and I have extreme amounts of gas. The worst symptons last 4 to 6 hours, and then the diarrhea begins and can last for several days.

I had the same feelings about food as you do, but now I am beginning to experiment with cooking different gluten-free items. I have never been a good cook, so this is quite a challenge. I still do not like to eat in restaurants. Be carefull of the french fries. I have been glutened several times on french fries, even McDonald's. I didn't know for a long time to ask about a dedicated fryer.

I think that all of us get depressed from time to time, so hang in there and vent here when you need to! :D

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Ive been gluten-free for around 5 months now and my symptoms are MUCH different than before- exactly as described, if i have a crumb of something i get sick and it comes on almost immediately (used to be a delayed rxn). Also, used to be sick all the time- now i never even think about it unless i mess up (which is more often than id like to admit, but certainly nowhere near what it was at the beginning)

as for the food, i TOTALLY relate! i am 24 and a law student in NYC, so i have no time to cook and am always eating on the go... Up until this year, food was one of my favorite things in life and this was a huge blow for me. its been very hard b/c i find myself living on certain (boring) foods b/c i have no time to be inventive- obviously law school and working part-time doesnt leave me too much time to play w/ different recipes. And i hate eating out (which i used to love) b/c it is so risky and difficult. But this is all starting to get much easier as i get more used to it. I've started to branch out now that i know the right questions to ask, and my friends and family have been amazing- my bday was last week and 3 of my friends baked me gluten-free desserts from scratch! its not easy to adjust, and its frustrating to make mistakes, but even w/ our busy lifestyles, this can be done. And im slowly starting to regain my love of food :)

Good luck!

-Stefi

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sam, below is some info on a few easy gluten-free meal ideas, and links to some gluten-free food lists. you will get the hang of it soon and come up with a new repetoire of gluten-free foods. there is a ton of room to be creative while being gluten-free. since you are into food, perhaps you should ck out some gluten-free recipes. there are a host on this website too you could start with: http://www.celiac.com/st_main.html?p_catid=20

did you know about the restaurants with gluten-free menus--those are safer bets for eating out. but since you are in the beginning stages, you should keep that to a minimum. you can always eat before, bring a snack or bring a gluten-free tv dinner to have the server heat up. i've done it before... another tip is to get gluten-free dining cards for restaurants. they help explain your needs and the seriousness of celiac. talk to a manager, ask questions and insist when eating out. anywho, pf changs, mitchell's fish market, ted's montana grill and outback are some of the few i go to with gluten-free menus.

some of my symtoms did change after going gluten-free. now when glutened i get major brain fog, which i didn't get so much before being gluten-free.

Thai Kitchen--lots of gluten-free thai type dishes...really good. You just add the meat you want, noodles, sauce etc are included. http://www.thaikitchen.com/infocenter.html

Amy's makes quite a few frozen dinners and a cheese pizza that are gluten-free. Amy's also makes quite a few gluten-free canned soups that are good too. You can see their products and get their gluten-free list here. http://www.amyskitchen.com/special_diets/celiac.php Amy's also makes some good gluten-free soups you can heat quickly.

Really yummy gluten-free rice dishes. You can serve as a side or add a meat/veggie and eat as a meal-- http://www.riceexpressions.com/expressions.php

If you have a Trader Joe's by you-they have several gluten-free frozen stirfries and dinners. Just ck the gluten-free list on the website--east or west coast. They also have chicken sausage that is awesome!

Gluten free pantry makes some good skillet meals. Just add meat or beans. We really like the stroganoff meal. http://www.gluten free.com/glu/showprod.cfm...jectGroup_ID=74

Have you tried Tinkyada's gluten-free pasta yet? It is great and you can make a ton of quick meals with it.

Dinty Moore beef and chicken stew are gluten-free--just throw them in a pot to heat up.

Other quick meal ideas--tacos and taco salads are made gluten-free easy, rice and beans (you can get micro rice and canned beans-just heat with spices), lasagna, pasta dishes, stirfries, hamburger/fries (love Alexia fries-gluten-free!), rice/quinoa pilafs (there are a lot of quick/precooked rices out now), chips/salsa, we eat "breakfast for dinner" sometimes--gluten-free pancakes (Pamela's mix is our favorite) w/ meat/veggie omelettes, frozen veggies are usually gluten-free and easy to prepare as a side, baked beans--(most of Bush's are gluten-free), sandwiches with gluten-free bread and miracle whip etc, Delmix has some gluten-free taquitos as well as costco beef taquitos, Dinty Moore microwave meals, Hormel Tamales, Lundberg Rice Sensations, Perdue Short Cuts, Sam's Club beef Taquitos...

http://www.saraleebakery.com.au/service/sr...aq.html&top=faq

http://www.yoplait.ca/en/questions.aspx?cat=11

http://www.leaperrins.com/contacts.php#qe

http://www.thelaughingcow.com/lc/lc.nsf/Cu...rServiceL2-FAQs

http://www.heinz.com/jsp/consumer_faq.jsp#...Free%20Products

http://www.annies.com/faqs/ingredients.html#free

http://www.worldpantry.com/cgi-bin/ncommer...faqs.d2w/report

http://www.amys.com/products/Amys_Gluten_Free.pdf

http://www.alexiafoods.com/faq_main.htm#q05

http://www.fantasticfoods.com/faq.php#3

http://www.frenchsfoodservice.com/frenchs/...sp?articleid=50

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Jenvan - Thanks for posting those sites. My husband loves hot sauce and I didn't realize all those as well as the French's mustard was ok. He'll be so excited maybe he'll forget about the tobacco issues he's having right now.

Jennifer

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sam, below is some info on a few easy gluten-free meal ideas, and links to some gluten-free food lists.  you will get the hang of it soon and come up with a new repetoire of gluten-free foods.  there is a ton of room to be creative while being gluten-free.  since you are into food, perhaps you should ck out some gluten-free recipes.  there are a host on this website too you could start with:  http://www.celiac.com/st_main.html?p_catid=20

did you know about the restaurants with gluten-free menus--those are safer bets for eating out.  but since you are in the beginning stages, you should keep that to a minimum.  you can always eat before, bring a snack or bring a gluten-free tv dinner to have the server heat up.  i've done it before...  another tip is to get gluten-free dining cards for restaurants.  they help explain your needs and the seriousness of celiac.  talk to a manager, ask questions and insist when eating out.  anywho, pf changs, mitchell's fish market, ted's montana grill and outback are some of the few i go to with gluten-free menus.

some of my symtoms did change after going gluten-free.  now when glutened i get major brain fog, which i didn't get so much before being gluten-free. 

Thai Kitchen--lots of gluten-free thai type dishes...really good. You just add the meat you want, noodles, sauce etc are included. http://www.thaikitchen.com/infocenter.html

Amy's makes quite a few frozen dinners and a cheese pizza that are gluten-free. Amy's also makes quite a few gluten-free canned soups that are good too. You can see their products and get their gluten-free list here. http://www.amyskitchen.com/special_diets/celiac.php Amy's also makes some good gluten-free soups you can heat quickly.

Really yummy gluten-free rice dishes. You can serve as a side or add a meat/veggie and eat as a meal-- http://www.riceexpressions.com/expressions.php

If you have a Trader Joe's by you-they have several gluten-free frozen stirfries and dinners. Just ck the gluten-free list on the website--east or west coast. They also have chicken sausage that is awesome!

Gluten free pantry makes some good skillet meals. Just add meat or beans. We really like the stroganoff meal. http://www.gluten free.com/glu/showprod.cfm...jectGroup_ID=74

Have you tried Tinkyada's gluten-free pasta yet? It is great and you can make a ton of quick meals with it.

Dinty Moore beef and chicken stew are gluten-free--just throw them in a pot to heat up.

Other quick meal ideas--tacos and taco salads are made gluten-free easy, rice and beans (you can get micro rice and canned beans-just heat with spices), lasagna, pasta dishes, stirfries, hamburger/fries (love Alexia fries-gluten-free!), rice/quinoa pilafs (there are a lot of quick/precooked rices out now), chips/salsa, we eat "breakfast for dinner" sometimes--gluten-free pancakes (Pamela's mix is our favorite) w/ meat/veggie omelettes, frozen veggies are usually gluten-free and easy to prepare as a side, baked beans--(most of Bush's are gluten-free), sandwiches with gluten-free bread and miracle whip etc, Delmix has some gluten-free taquitos as well as costco beef taquitos, Dinty Moore microwave meals, Hormel Tamales, Lundberg Rice Sensations, Perdue Short Cuts, Sam's Club beef Taquitos...

http://www.saraleebakery.com.au/service/sr...aq.html&top=faq

http://www.yoplait.ca/en/questions.aspx?cat=11

http://www.leaperrins.com/contacts.php#qe

http://www.thelaughingcow.com/lc/lc.nsf/Cu...rServiceL2-FAQs

http://www.heinz.com/jsp/consumer_faq.jsp#...Free%20Products

http://www.annies.com/faqs/ingredients.html#free

http://www.worldpantry.com/cgi-bin/ncommer...faqs.d2w/report

http://www.amys.com/products/Amys_Gluten_Free.pdf

http://www.alexiafoods.com/faq_main.htm#q05

http://www.fantasticfoods.com/faq.php#3

http://www.frenchsfoodservice.com/frenchs/...sp?articleid=50

<{POST_SNAPBACK}>

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<{POST_SNAPBACK}>

thank you Jen for taking the time to put together that very thoughtful list! And, thank you everyone else for the awesome support and suggestions. I feel more equipped and positive now! It is great to have this type of support. thanks :) happy friday.

sam

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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