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To All You Possible, And Diagnosed Celiacs!


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23 replies to this topic

#16 danikali

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Posted 08 November 2005 - 01:05 PM

I'm sorry, I just have one more question, if you could help:

For the past week and a half, I am eating a lot of gluten, not too much, but more than I have in a while. (I mean, I'm not holding myself back like I would before, even though I would go back and forth a lot). Anyway, this past week especially, (not to be gross), but I am having extremely embarassing gas, and I'm usually really constipated, but I've been going almost every day now, but most of the time, I feel like I have to push it out, and most of it doesn't come. And then yesterday and today, I have both constipation and diarrhea, and not until I have diarrhea does the gas subside and my stomach feels better. I am also pretty late on my menstural cycle (not pregnant, I took 5 tests). Do you think this could all actually be from stress about the doc. appt. next week? Because my body is REALLY going haywire these past few days. I don't know how to tell if it's the gluten or stress. I know you're not a doctor, but if you could give me any input from your experiences. Thank you.
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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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#17 kelliac

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Posted 08 November 2005 - 01:29 PM

Anything is possible. You could also have IBS in addition to celiac/gluten sensitivity. Why couldn't you have both? Celiac presents in so many different ways--that is why it is so mis/underdiagnosed. Go gluten-free after you send in your specimen, then you'll feel better.
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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

#18 danikali

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Posted 08 November 2005 - 01:37 PM

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.

<{POST_SNAPBACK}>


wow! So you also have pain in your kidneys? I have SO MANY problems with my bladder and kidneys, especially when I eat gluten! Were you diagnosed by a doctor or enterolab? This is so interesting! Every problem I have, someone else also has somewhere in one of these posts. It's so good to see! (well, bad that we're all sick and not getting too much help) but you really start to think you're crazy until you talk to people with the same exact problems! Thank you everyone!
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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

#19 Rachel--24

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Posted 08 November 2005 - 01:52 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}>



I think if you feel better off gluten and the symptoms go away when your're not eating it then you already have your answer. I wouldn't stress too much about the tests....stress will only make you feel worse. I think the people who test negative w/ Enterolab dont generally hang out on this message board. There is one person that I know of on this board who had negative results but she knows she cant eat gluten so she follows the diet. I think she was off gluten for awhile before testing. Dont remember how long though.

I wasnt eating gluten for 4 months before my Enterolab tests and they were positive. Enterolab tests will be accurate for you since you're eating gluten...the bloodtests may not be since you did go gluten-free for awhile.
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Rachel

#20 Rachel--24

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Posted 08 November 2005 - 01:59 PM

Doctors diagnosed all kids with Failure to Thrive, tried to blame us, the parents.  These kids ate well, often and everything

<{POST_SNAPBACK}>


How can "Failure to Thrive" be a diagnosis in itself? :huh:

My doctor wrote "Failure to Thrive" on my charts before I figured everything out on my own and went on the diet. He never tried to figure out *why* I wasn't thriving though. Also isnt "failure to thrive" usually in regards to kids who arent growing properly? I'm over 30 yrs. old...I was thriving just fine for 30 yrs...how could I just suddenly fail to thrive for no good reason! :blink:
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Rachel

#21 danikali

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Posted 08 November 2005 - 02:05 PM

How can "Failure to Thrive" be a diagnosis in itself?  :huh:

My doctor wrote "Failure to Thrive" on my charts before I figured everything out on my own and went on the diet. He never tried to figure out *why* I wasn't thriving though. Also isnt "failure to thrive" usually in regards to kids who arent growing properly? I'm over 30 yrs. old...I was thriving just fine for 30 yrs...how could I just suddenly fail to thrive for no good reason!  :blink:

<{POST_SNAPBACK}>



This alone proves that some doctors just should not be doctors. Some of them don't even have common sense! That's kinda funny, but kind of not! Who would even believe this excuse?

Also I want to add, does anyone else think that IBS doesn't really exist? Does anyone think that there is ALWAYS an underlying problem that needs to be dug up? Everyone I know who was diagnosed with IBS eventually gets more symptoms as they go on.
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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

#22 ravenwoodglass

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Posted 09 November 2005 - 05:37 AM

This alone proves that some doctors just should not be doctors. Some of them don't even have common sense! That's kinda funny, but kind of not! Who would even believe this excuse?

Also I want to add, does anyone else think that IBS doesn't really exist? Does anyone think that there is ALWAYS an underlying problem that needs to be dug up? Everyone I know who was diagnosed with IBS eventually gets more symptoms as they go on.

<{POST_SNAPBACK}>



I had to answer this one, cause I agree fully. To me IBS stands for "I Be Stumped" (or stupid depending on my mood :D ). IBS , to me, means that you're left to suffer cause it is too much trouble to find out what someone is sensitive to. And much more profitable for them, after all as we get worse they get to hand us more meds, order more tests and see our faces (wallets) on a regular basis. Medicine is profit driven in this country, food intolerances don't make them any money.
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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)

#23 danikali

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Posted 09 November 2005 - 12:12 PM

I had to answer this one, cause I agree fully. To me IBS stands for "I Be Stumped" (or stupid depending on my mood :D ). IBS , to me, means that you're left to suffer cause it is too much trouble to find out what someone is sensitive to. And much more profitable for them, after all as we get worse they get to hand us more meds, order more tests and see our faces (wallets) on a regular basis. Medicine is profit driven in this country, food intolerances don't make them any money.

<{POST_SNAPBACK}>


This is so right! If there is anyone out there who knows someone who has IBS ALONE, nothing else, and there symptoms stay the same forever, and never get worse, please, let me know. I'd be shocked, but if you can prove me wrong.......
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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

#24 kelliac

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Posted 09 November 2005 - 12:34 PM

wow! So you also have pain in your kidneys? I have SO MANY problems with my bladder and kidneys, especially when I eat gluten! Were you diagnosed by a doctor or enterolab? This is so interesting! Every problem I have, someone else also has somewhere in one of these posts. It's so good to see! (well, bad that we're all sick and not getting too much help) but you really start to think you're crazy until you talk to people with the same exact problems! Thank you everyone!

<{POST_SNAPBACK}>


Funny, a severe kidney infection was the first illness I could actually remember (I was 4 or 5). Every kidney infection and/or pain since has been linked by doctors to that early infection. All other tests ruled out kidney problems, but strange to see a celiac link. It is an ongoing problem but not so much now that I'm gluten free. My sister with celiac has had recurrent kidney problems all her life as well.
  • 0
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


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