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ptkds

Just So Sick Of This Disease.

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I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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i hear you!!! i have some of the same issues so dont think you are alone in this.although i feel better i still have days of extreme gas and big d and i have no idea where i got glutened.also ive gained at least 10 pounds in the last 2 months since going gluten free. im already over weight at 250lbs know im hovering around 257. it makes no sense. i cut out fast food for the most part and im eating more veggies now than i have in my whole life. sorry i cant help you , but at least know your not alone


diagnosed  Celiac in Feb 2007... having a real hard time commiting to the diet

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I don't have anything useful other than a

{{{hug}}}

I hope that helps.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds

I so know what you are goign threw, Last night i told hubby i just want to be normal. We were at the park and either people were having dominoes or sub sandwhiches from subway as family picnic. I was so depressed. Now that we know for sure what is going on with my ss, it is even more depressing.

I am with you on the weight thing, I gained weight when i first went gluten free, now im afraid to even get on the scale to see if i gained or lost, but i think i have gained, my stomach is still big. I am actually thinking of going back on the 6wbm diet, when i lost lots of weight and felt the best i have ever, and since its mostly just fruits, veggies, meats and rice and potatoes, i know ill be eating gluten free lol

paula


gluten, casein and soy free

on low carb/low sugar diet

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You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad. Before I got sick I actually found the strength to stick with a healthy diet and was losing weight. Then i got sick during the holidays and could eat veggie anymore. Then when I went gluten free I started gaining weight. tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight. I'm hoping that by the time I'm sick og the diet I can eat veggie again.

Hang in there! You are not alone.


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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Ptkds...I think you have hit a nerve here with many of us! I'm sorry you've been having such a rough time. Have you checked all of your cosmetics, shampoos, lotions, pet food, soaps, condiments, etc? Those things can all be hidden sources of gluten and even though you are not ingesting them directly, you could inadvertantly be digesting them. I also get the canker sores--they are the pits!

I have been gluten free for only a couple of months, and I find that some days are easy and some just plain aren't (like at midnight when I wanted a bowl of Honey Bunches of Oats but knew that would be a very bad thing for me to eat. But that's what I really wanted!). I lost 45 lbs doing the South Beach diet last fall and have managed to put back on at least 10 lbs since I went gluten free! It's very frustrating. I think it's happening because I am trying to replace the gluten filled carbs with the gluten free carbs, which is fine, except that the carbs are what got me into trouble in the first place! South Beach is actually very easy to follow, and because it has few carbs in it, it's very easy for us celiacs to do.

I also have been thinking about this since I read your post early this morning. One of the things that helps me a lot is having food already prepared that I can just pull out of the freezer when I want them--like pancakes, waffles, baked goodies (definitely NOT South Beach friendly, but they're there for when I want or "need" them!). I keep lots of snacks around that I know I can eat so I don't feel deprived. It's hard knowing that I can never just walk into a Wendy's and order a #2 or into the nearest pizza place and grab a slice. But there are alternatives and the more we talk about it and get out there, the more people are going to know about it!

Hang in there--you definitely are not alone, and this is a great place to "cry"


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds

Hi PTKDS

I can relate to a lot of what you say. I am slowly working through the sources of my CC (used tupperware, colander, microwave at work, etc) and think I've been accidentally glutened once each week since 2/15/07.

I have 30 more pounds to lose. I have lost some since diagnosis, only because I've been too sick or too scared to eat...and that's not a healthy way to lose weight. And I'm with Jo R., I am having trouble with veggies and fruit when my stomach is upset, so I have rice a lot.

One thing I did do recently was to go on the South Beach Diet and also I did not replace bread, pizza, pasta with gluten-free. I do cheat sometimes but staying away from "white" carbs.

And then yesterday, my teenaged daughter showed me a rash that looks like DH. So I'm trying to cope with that too.

Hang in there. People on this board said that it takes a year to figure things out. I hope you get there faster.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight.

After the initial phase of the Atkins diet, you do need to add in veggies. It's not safe to only eat protein for the long haul.

I had to overcook my veggies when I first went gluten-free ... not how I like them, but the only way my stomach would tolerate them. Now I am able to eat them cooked how I like. Soups made it pretty easy to overcook them.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I understand your pain. I have been gluten-free since 2/2006. It's been a year and I continue to struggle. Really, you need to keep your diet simple. Veggies, fruit, meats, etc. Don't try to add new foods until you master the basics. Adding new things must be slow and one thing at a time. I have recently discovered an intolerance to corn products. A set back? of course, but there is no other choice but to find the culprit and eliminate it. Use this site to help you with concerns and advice. Good luck to you.


Positive biopsy, positive blood test in 2/2006

Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)

Interstitial cystitis diagnosis 2004

Hysterectomy 2003

3 for c-sections, 2 laparoscopies to remove abdominal adhesions

Abnormal heart beat when tired or glutened

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You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad.

Whoopsie--Malt o Meal has never been gluten-free (malt is gluten); that old web site was wrong, as are half the nutritionists out there! :ph34r:

I'm so sorry so many of you are having a tough time. :(

Should we try to figure out where so many of you are getting glutened? I know I had a tough time the first few months til I figured it all out, thanks to all the help I got from this board.

You may need to eliminate dairy as well until your intestines heal. Also, I had a lot of trouble with the gluten-free bread substitutes at the beginning; it wasn't til a few months went by that I could handle them, so you might want to drop them from your diet just temporarily.

The things that got me through the first few months were Frito's Corn Chips, dark chocolate chips, and baked potatoes with soy sour cream and butter (which for some reason was not a problem). I did gain weight on the gluten-free breads and cookies, but lost very quickly when I cut them out of my diet, even though I was having tons of Frito's, rice potatoes, and chocolate. Go figure!

Hope that helps!

edit: I was also having a tone of fresh fruit and vegies, so it wasn't all unhealthy!

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Dear ptkids,

I understand your pain as well. I get glutened due to being with inconsiderate relatives. Due to my ill health, I am stuck here against my will. They do not take it seriously. They do not think Celiac is that dangerous. I have to share a kitchen with them. :( I am hungry all the time, and still cannot lose weight either! My Thyroid whether it is slow or fast seems to make me overweight. That figures that we would not be like most typical people, where we would only lose the hope of ever losing a pound instead of weight like everyone else! Leave it to me to have a weird body that gains weight when it is supposed to lose it! You can complain anytime you want! Don't worry about it! :)

You have to vent sometimes!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Dear ptkids,

I understand your pain as well. I get glutened due to being with inconsiderate relatives. Due to my ill health, I am stuck here against my will. They do not take it seriously. They do not think Celiac is that dangerous. I have to share a kitchen with them. :( I am hungry all the time, and still cannot lose weight either! My Thyroid whether it is slow or fast seems to make me overweight. That figures that we would not be like most typical people, where we would only lose the hope of ever losing a pound instead of weight like everyone else! Leave it to me to have a weird body that gains weight when it is supposed to lose it! You can complain anytime you want! Don't worry about it! :)

You have to vent sometimes!

Sincerely,

NoGluGirl

Im sorry you are struggling...perhaps a consultation with a knowledgable dietician might provide a fresh set of eyes to how you are eating and preparing your food....you deserve to feel well and it is possible to feel well again!! Good luck and hang in there!!

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You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad.

Hang in there! You are not alone.

Jo R. This is so typical.... I did exactly the same....except for me it was some tortilla chips with CC.

Before I got sick I actually found the strength to stick with a healthy diet and was losing weight. Then i got sick during the holidays and could eat veggie anymore. Then when I went gluten free I started gaining weight. tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight. I'm hoping that by the time I'm sick og the diet I can eat veggie again.

Honestly (and this aplies to everyone) the best thing you can do is just eat fresh food you prepare from scratch...

The chance of accidental glutening drops to nearly nil... you eat healthy by design and by not getting accidentally glutened and if you do slip up somewhere its easy to rectify because its not the Malt o Meal cereal or tortilla chips...

I did gain weight on the gluten-free breads and cookies, but lost very quickly when I cut them out of my diet, even though I was having tons of Frito's, rice potatoes, and chocolate. Go figure!

I don't see any problem explaining that.... most of the gluten-free breads etc. are just rubbish... and nutritionaly empty but of course we try and adapt the before to after... so we end up basically basing our diet on rubbish...

even though I was having tons of Frito's, rice potatoes, and chocolate.
Yes because you realise the Frito's are rubbish... rice is a decent source of nutrition and the chocolate you realise is rubbish...

Being a sensible person you realise a lot of rubbish isn't good for you so you eat it in moderation... whereas stuff like the really rubbish gluten-free products we eat in desperation not as treats...

Just about the worst diet is the one you think is healthy but isn't! There's nothing wrong with the odd treat even if your aiming to loose weight so long as you regard it as a treat!


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Im sorry you are struggling...perhaps a consultation with a knowledgable dietician might provide a fresh set of eyes to how you are eating and preparing your food....you deserve to feel well and it is possible to feel well again!! Good luck and hang in there!!

Dear mandasmom,

I saw a dietician before. It was two or three years ago. She really never mentioned Celiac or anything. I told her what I ate, and she said I was on the right track. My main difficulty is having to be paranoid and exhaust myself obsessively cleaning and cooking part of the day. I cannot keep this up. I am going to have to start cooking one day a week from now on. I can do the prep before hand. I have very limited resources. Cookware is not plentiful. My parents are not careful at all. They do not take Celiac seriously. It is so annoying. I wish I were well so I could move out and work. I could have other issues besides Celiac, like Lyme. I have Candida for sure. Thank you for the encouragement!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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What catches my eye is that you get glutened often. Sounds like you may have to do some investigation into why and what you can do about it.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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