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To All You Possible, And Diagnosed Celiacs!


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23 replies to this topic

#1 danikali

 
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Posted 08 November 2005 - 07:56 AM

Okay, I'm getting really frusterated here. My whole family and friends, and I think possibly even my fiance think I have an eating disorder!!! Did anyone else have that problem before they were diagnosed? I have lost weight, and I do think a lot of it is because I got so "sick" of eating and getting SICK! (my stomach get so large, I look like I'm pregnant if I eat a few slices of bread and like 3 cookies!), so I ate less, more times in the day. But I still consume the normal calorie intake of like 2,000 calories, sometimes more!

Anyway, I have black and blue marks on my legs, and I am several days late on my menstural cycle(not pregnant, I took 5 tests, 99% positive), but I am also eating A LOT, especially, and mostly gluten this past month so I can get a positive on my tests next week and finally PROVE to everyone I'm not making this up!

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

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#2 ravenwoodglass

 
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Posted 08 November 2005 - 08:11 AM

Okay, I'm getting really frusterated here. My whole family and friends, and I think possibly even my fiance think I have an eating disorder!!! Did anyone else have that problem before they were diagnosed? I have lost weight, and I do think a lot of it is because I got so "sick" of eating and getting SICK! (my stomach get so large, I look like I'm pregnant if I eat a few slices of bread and like 3 cookies!), so I ate less, more times in the day. But I still consume the normal calorie intake of like 2,000 calories, sometimes more!

Anyway, I have black and blue marks on my legs, and I am several days late on my menstural cycle(not pregnant, I took 5 tests, 99% positive), but I am also eating A LOT, especially, and mostly gluten this past month so I can get a positive on my tests next week and finally PROVE to everyone I'm not making this up!

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!

<{POST_SNAPBACK}>


You poor thing I sure do know what your going through.  I dealt with the 'stress' diagnosis all my life, "here have a prozac" :(
I went through years of sickness, starting with depression and all year round 'poison ivy (DH) as a kid.  I got real sick  after my last child was born and then started 15 years of progressive illness and many, many tests that came up negative, including celiac panels.  Everyone told me over and over it was stress.  The only one who really understood how sick I was was my DD. I was finally diagnosed by an allergist. Listen to your body, if you feel better gluten free then be so, no matter what family and tests say. Your return to health should be 'proof' enough for them, it is for some doctors.  Wishing you the best, K


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Rachel--24

 
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Posted 08 November 2005 - 10:08 AM

It took awhile for my family and friends to realize how sick I was. For the first 2 years people werent taking me too serious because I "looked" fine on the outside. :rolleyes: The doctors figured I was making it up too since the tests always came back normal. I started losing alot of weight the third year...it came off pretty fast so once I started "looking" sick EVERYONE took notice. Noone thought I was anorexic though...I've always wanted to gain weight..not lose it. I dont think the doctors thought it either because I had been going in for 3 years and at first I was normal weight. My doctor was concerened about the weightloss but just told me to go home and eat. :huh: HELLO..I was eating...I was eating tons of cookies, cake, ice cream, pasta, bread etc. :ph34r:
Didn't know about gluten back then.

I was at home for 2 years on disability and for most of that time people wondered if it was in my head or if I was suffering depression (I was crying everyday). I went to a resteraunt and got so sick I left and drove to my mom's...she took one look at me and decided to take me to the ER. This was about the time everyone started to take me serious. When I changed my diet changes were dramatic. My depression, brainfog and a ton of other symptoms were gone very quickly. I had been on strong pain meds for a year and since the day I changed my diet I havent taken a single med. I'm now back at work and everyone around me is VERY supportive. I've gotten lots of apologies...from the doctors too.

Interestingly every doctor recommended I see a psychiatrist...so did my friends and family. When I finally decided to go the woman told me I had a real physical condition going on that an antidepressant would not help. She said the doctors just hadnt figured out what was wrong yet but she could not help. She was the only one who had a clue and she only spent 1 hour with me.

Remember...you can still have a problem with gluten and NOT test positive for Celiac. If you tell everyone you *have* it and then the tests are negative...they will probably doubt you even more. Lots of people test neg. in the bloodtests but have a positive response to the diet. Also didnt you say you were off gluten for awhile? You would have to eat gluten for more than just a couple weeks to be sure the bloodtests are accurate.
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Rachel

#4 nogluten!

 
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Posted 08 November 2005 - 10:32 AM

People used to think I was anorexic and I never was. I'm still very thin and sometimes hear my grandma say in a stage whisper "she's too thin." It's very annoying. People commenting about a person being too thin is ok, but it's an insult to tell someone they're too fat. Arg.
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Every day is a blessing.

#5 kelliac

 
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Posted 08 November 2005 - 10:48 AM

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!

<{POST_SNAPBACK}>


Almost everyone I know with gluten sensitivity has at one time or another been misdiagnosed. If it wasn't stress, it was IBS. If not IBS, it was "female problems". Not female, then it was "in your head". Only the LUCKY few, and I do mean LUCKY, were diagnosed early on and under treatment for gluten sensitivity before other problems started cropping up.

One of my daughters started losing her hair, had goiters, geographic tongue, and more while starting college. Yes, it may have coincided with a stressful time, but no one attributed any of those symptoms to celiac. But it was.

Another daughter had chronic hives, year round poison ivy (DH) like the other member just mentioned, bone pain, chronic diarrhea misdiagnosed as a "South American parasite" although she had never been out of the country at that point in her life, and so forth. She too has celiac.

Another daughter lost her hair, was diagnosed as "depressed" because she was chronically tired. Later discovered she was celiac and had severe anemia. She also had been in and out of the hospital with weird rashes and a variety of symptoms. She had diagnoses of angioedema, depression, allergies, cardio something. Her mouth had sores in the corners, her tongue looked like it was peeling (geographic tongue). She had mouth ulcers, bloody stools, you name it. Again, in and out of the emergency room with chronic appendicitis. CT scan just showed inflammed bowels. She was later diagnosed celiac.

My son was above average for height and weight until he was weaned. When he started eating processed foods, his growth slowed to the 10th percentile. Doctors diagnosed all kids with Failure to Thrive, tried to blame us, the parents. These kids ate well, often and everything. They weren't picky, but they didn't grow. When my son went gluten free (only in the summer when out of school and we controlled what he ate), he grew 4 inches. The next summer he grew another 7 inches. Coincidence, I don't think so. This is just some of the family with celiac. Have numerous friends that went from doctor to doctor with you name it. Finally, a gluten-free lifestyle made the difference. Doctors still don't want to believe it, they like prescribing prednisone and remicade. gluten-free foods don't require appointments and prescriptions. Who knows what keeps some doctors from diagnosing this awful disease. Hang in there no matter what the results of your test. You will feel better gluten-free!!! :rolleyes:
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gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03
DQB1,1 (subtype 6,6).
Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.
casein free/dairy free 11/05, since positive enterolab casein test

#6 darkangel

 
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Posted 08 November 2005 - 11:22 AM

People commenting about a person being too thin is ok, but it's an insult to tell someone they're too fat.  Arg.

<{POST_SNAPBACK}>



Preach on, sista. Don't even get me on my soapbox about that. Growing up, I was tormented as much or more than any overweight child. When I was at my sickest, dxed with ulcerative colitis, I had so many people say, "You're so skinny! Why don't you just EAT?"

A friend of my next door neighbor saw me working in the yard in shorts on one occasion - I don't wear shorts out in public - and asked if I was anorexic, but anyone who knows me knows I'm not. I eat well and have always wanted to gain weight.
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#7 Rusla

 
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Posted 08 November 2005 - 11:23 AM

I am your other end of the spectrum. I have gained 175 in less than 5 years and lost 11 teeth right now I still haven't healed from the last tooth pulled almost 3 weeks ago. I have burning in my stomach, diarrhea, migraine headaches and kidney pain with gluten. I will also get pimple like clear little blisters on my face and chest.

I am also casein, lactose, dairy intolerant.

My test came back gluten intolerant . However, I had been gluten-free for quite a few days so we have to repeat it in 3 months and I have to make sure I eat gluten for weeks before the test is done.

I have hypothyroidism which was discovered this year.

I always had a tiny waist but now I have a huge round belly, which I hate.

I hope you find someone to help you with this. Many of us are still struggling with doctors who think we are neurotic. Show your mother these stories, show your doctor these stories. Someone needs to hit the medical profession over the head and give them a wakeup call.
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Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


Creative people need maids.

#8 danikali

 
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Posted 08 November 2005 - 11:35 AM

Thank you for the reassurance! I just feel so hopeless these days. New symptoms keep appearing, and you're right, no one believes me and they think it's all in my head because the doctors can't find anything.

So I've been eating gluten for maybe about a month and a half by the time I go to see my doctor next Wednesday. Even though I am getting major symptoms every day now being back on the gluten, you think the tests still may come back negative? I'm praying either the doctor or enterolab find something, just a little bit of proof that all my problems are related to gluten. I really am falling deeper and deeper into a hole. I just started a new job in July and I have already taken so many days off of work! And I also go to school at night, and feel sometimes like I'm falling behind because I'm always so tired, no matter how much sleep I get.

I was off gluten for a while, most of the spring and summer, except for hidden gluten that I didn't know about. And I did feel better, most of the time. But then it would hit me all of a sudden out of nowhere and I would feel like I was going to die! And yeah, people can hear me complain, but they can't see the pain, and I'm sure they are sick of hearing me complain, too. But what I am supposed to do? Just sit around and get more sick, not say a word, and let it get to the point where another serious disease is the outcome?

The holidays are coming up. I don't want to eat any gluten, and I know that I'm going to hear it. Sometimes I feel like I should lie to everyone about my results just so they believe me and stop making me feel so bad. What if I completely live on nothing but gluten for the next week and a half, couldn't that give me a more accurate result? And is there a time limit for eating gluten and not eating it for the enterolab tests?
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#9 kelliac

 
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Posted 08 November 2005 - 11:56 AM

The holidays are coming up. I don't want to eat any gluten, and I know that I'm going to hear it. Sometimes I feel like I should lie to everyone about my results just so they believe me and stop making me feel so bad. What if I completely live on nothing but gluten for the next week and a half, couldn't that give me a more accurate result? And is there a time limit for eating gluten and not eating it for the enterolab tests?

<{POST_SNAPBACK}>

I feel for you. Only you can take care of you. I know it's hard to ignore others, but no matter what they say, you know how you feel, they don't. Make your own meal for the holidays and take it with you if you must. My in laws still don't understand (probably never will). So, I'm packing.

Jax Peters Lowell of the Gluten Free Bible spoke to our GIG group and told us a funny story. It's her three strikes rule. The first time you go to a friend/relative/neighbor's house to eat and they forget to cook something for you, it's ok. Everyone forgets, gets busy, etc. The second time they forget something for you, it's not as okay. In fact, it is upsetting but you can understand because it is still new for them. The third time they forget, you need to forget to come to their home from now on.

As for enterolab and how long you need to be off gluten, I can only speak for myself. I was what I thought 99.99% gluten free for over a year. However, my tests still came back positive for a lot of gluten in my diet. That was a real wake up call regarding my choices. Even eating all fruits and vegetables and meals prepared at home for the most part, I was still getting glutened somehow. They said it could have been higher before going gluten free and it may still be heading down to normal. However, I don't know how high it was so I'm going to retest next year to make sure it continues to go down. Here's hoping for your answer really soon. Good luck.
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gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03
DQB1,1 (subtype 6,6).
Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.
casein free/dairy free 11/05, since positive enterolab casein test

#10 danikali

 
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Posted 08 November 2005 - 12:18 PM

That's very true about people not understanding. In the long run, it's my body, so I've got to look out for my well being because I will have to be the one with the consequences, and it would be more hard just to say "sorry" to myself for ignoring my problems.

I do have another question about enterolab however. Do you ever hear of anyone getting complete negative results from them if the person being tested STRONGLY BELIEVES they are intolerant to gluten? I will just feel so let down if even enterolab gives me a negative result.
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#11 Carriefaith

 
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Posted 08 November 2005 - 12:26 PM

Did anyone have this problem before they were diagnosed?

I had people confront me about my weight. For example, I was taken aside once and asked if I am ok, they were implying "are you eating". And I had some people telling me that I looked way too thin and didn't look good.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#12 kelliac

 
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Posted 08 November 2005 - 12:28 PM

I do have another question about enterolab however. Do you ever hear of anyone getting complete negative results from them if the person being tested STRONGLY BELIEVES they are intolerant to gluten? I will just feel so let down if even enterolab gives me a negative result.

<{POST_SNAPBACK}>

Which tests did you have done?
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gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03
DQB1,1 (subtype 6,6).
Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.
casein free/dairy free 11/05, since positive enterolab casein test

#13 danikali

 
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Posted 08 November 2005 - 12:32 PM

I just ordered (yesterday) the Gluten Sensitivity Stool Panel Complete. I couldn't afford the extra gene test right now, plus I figured the doctor would be able to find out if I am a "full blown celiac" right now, and I am depending on enterolab to see if I am gluten sensitive. (in case the doc. gets a negative.)
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#14 kelliac

 
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Posted 08 November 2005 - 12:53 PM

I just ordered (yesterday) the Gluten Sensitivity Stool Panel Complete. I couldn't afford the extra gene test right now, plus I figured the doctor would be able to find out if I am a "full blown celiac" right now, and I am depending on enterolab to see if I am gluten sensitive. (in case the doc. gets a negative.)

<{POST_SNAPBACK}>

Boy, I wish you could add the gene test because it is so worthwhile. Even after being diagnosed via biopsy, I still thought in the back of my mind that maybe everything was due to something else. One doctor would say celiac, the next would say, I'm not thin enough. The next would say celiac, the one that did the positive biopsy said the biopsies were probably wrong. I was really confused. I finally met a great doctor who told me in no uncertain terms to give up gluten. I did it that day and never really looked back.

However, after reading online about enterolab (especially here in these posts), I just felt I needed more proof. Even though the diet was working small miracles in many different ways, I just wanted some written proof in my hand (although I knew in my heart I had gluten intolerance). The gene test was for double gluten sensitivity.

I have a funny feeling that enterolab will come back with something for you in terms of gluten sensitivity. People just don't spend the time and money when they don't deep down believe in something. If you feel strong enough to order it, you must feel you have something. However, if it does not, for some odd reason, giving up gluten is still the right thing to do. Just read all the signatures on this site that say they gave up gluten after reading Dangerous Grains. Hang in there.
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gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03
DQB1,1 (subtype 6,6).
Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.
casein free/dairy free 11/05, since positive enterolab casein test

#15 KaitiUSA

 
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Posted 08 November 2005 - 01:00 PM

I know how you feel. I had the same issue for a while and it was quite annoying. Nobody would listen to me...I would find another doctor if yours will not listen to you. You have alot of symptoms that are suspect of celiac so I would definitely consider it a possibility.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com




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