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Very Curious


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5 replies to this topic

#1 danikali

 
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Posted 07 November 2005 - 08:27 AM

I have not taken any tests yet, and I am going to a GI in about a week now, but I want to make sure that I really could be right thinking I have Celiac Disease. So I have a few questions and if anyone could answer them in any way, I would soooooooo appreciate it!!!!!

1. I alternate between constipation and diarrhea, but I have constipation A LOT MORE. Most of the time. Also, I am very late on getting my menstural cycle. I know that diarrhea could be a sign of malnutrition and therefore make a woman miss her menstural cycle, but could constipation also be a sign of malnutrition? (I am not pregnant, I took 3 tests already that are supposed to be 99% accurate, and I know what it feels like to be pregnant; I know that I am not.)

2. Are there any MAJOR signs of celiac disease? A symptom that tells you, you probably have it? (Specifically one of the following) I have a lot of symptoms, but I'm so scared that it could be something more serious. Mine are:

Constipation
Bloating
Bad heartburn, especially when laying down
back aches, come and go
leg cramps, especially when walking
knee pains
extreme fatigue at times (where I am too tired to stand up practically)
Foul Gas
Late menstural cycle
Black and blue marks on legs
lazy feeling in arms
Irritable
Migrane headaches, on and off

3. Also, I was off of gluten for about 3 months (except hidden gluten I didn't know about) and casein and I felt a lot better more often. Now I am back on it everyday because I know I am going to be tested soon. Now, there are always symptoms, sometimes light, and sometimes strong. With celiac, do the symptoms come and go, more severe and then less at other times? Or would every symptom be there everytime all day long? Also, my back aches seem to get worse when I am sitting in a chair or laying down. And when I am walking, it gets better. Would this be a sign of something else?

4. Are the signs of Celiac disease and just gluten intolerant (no celiac) the same, causing the same symptoms? Or are they different? And is it possible for my doctor to check for Celiac disease AND gluten intolerance, or do doctors just test for celiac? And if so, and my tests come back negative, where could I find gluten intolerant testing?

If anyone could help me in any way, I would SOOOOO appreciate it. Please help me! I feel like I'm going to drive myself insane until the doctors appointment! Or maybe until I finally know what is wrong with me!
  • 0
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 FaithInScienceToo

 
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Posted 07 November 2005 - 08:54 AM

Hi -

I kinda chuckled inside when I read your post...don't worry, I also have great empathy for you!

Anyway....I chuckled because I thought, "this person is on the right track...and should not worry!...she/he has a doc appt in one week..."

JUST BE SURE TO GET A FULL "celiac disease blood panel" done...tell you doc to order the FULL SCREEN.

If your antibodies come back positive, or even 'equivocal,' I say go off gluten again...and forget about a biopsy...unless your doc thinks you may have some other problem.

AND, if you find that you still have 'stomach problems,' and want to know if casein is causing your continued problems, go off casein one month later, to see if the rest of your problems go away...

Just be sure to keep in mind that it takes time for ALL of those peptides to get out of your system...and you will have withdrawal problems from casein elimination...I have just recently gone off of casein, have withdrawal symptoms, and have been reading a lot about it...It, and gluten peptides, can take a long time to clear out.

This is why I suggest that you go off gluten first...if all of your problems resolve, you may not need to give up dairy. Plus, withdrawl symptoms from casein could very well complicate your ability to know if having gone gluten-free is helping you.

If you have the funds to do add'l testing on your own, to find out if you have casein antibodies, I suggest ordering Enterolab's stool test - for gluten and casein, and also egg antibodies...and I suggest that you also do their cheek swab gene test, to complete your puzzle.

Anyway...keep eating gluten, until you get your tests done...

Best wishes and welcome!
Gina
  • 0
"Get busy living
or get busy dying."


From: The Shawshank Redemption
--------------------------------------------------------------
gluten-free since Jan 1 '05
Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:
Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA
via blood testing 53 days after I began the gluten-free diet on my own:
Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9
Since 30+ = positive for Celiac Disease when ingesting gluten, my doc
diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point
-------------------------------------------
Endoscopy with biopsies, AND colonoscopy with biopsies were done,
only to rule out other possible GI problems (especially intestinal
lymphoma) - My doctor told me the results indicated "no current damage
found" - and that as long as I stay gluten-free, I don't need another
biopsy for ten years.

Follow-up blood testing was done about one year later, by the same
Gastro doc, in Nov '05:
Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)
He then told me my tests results were back to normal, and "Keep up the
good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am
staying gluten-free.
------------------------------------------------------------------------------------------
ADDTIONALLY:
I was also diagnosed as positive for antibodies and autoimmune
response to gliadin by Enterolab, via stool specimen taken 56 days
gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit
---------------------------------------------------------------------
I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:
"positive" for casein antibodies from Enterolab (in Feb '05)
and
"positive" for casein IgG (Elisa) via York Labs' finger-prick blood
test, Sept '05
and continued 'stomach pains,' although nothing compared to before
going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!
**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood
Frequent childhood stomach aches, underweight, picky eater
Tooth enamel problems/excessive cavities in childhood
Diagnosed in 20's with non-allergic rhinitis
Two spontaneous abortions (childless)
IBS diagnosis at age 28 (all better post going gluten-free and casein-free)
["Horrible" digestive problems from ages 32-47 - excess gas,
diarrhea gone post gluten-free!]
Reflux diagnosis at age 35 ('reflux' gone post gluten-free)
ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)
Broke elbow in 2 places, age 39
Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -
taking Calcium and Vit D now)
Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)
Minor depression with anxiety diagnosed at age 42 (taking Paxil)
Skin cancer - squamous at age 43 and pre-melanoma at age 45
Adult acne (this, too, went away, but only after going dairy-free)
Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46
(That's gone now, too!)
Excessive bruising of skin began at age 45:
I was told by derm doc AND family physician "That's just thin, aging
skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual
bruising POST going gluten-free! I can now wear skirts and shorts
again!)


SO many years of being sick...
Hopefully, others will benefit from Science, and the increasing media
attention being given to Celiac Disease and gluten-based illnesses,
and will not have to go through what I, and others on here, have had
to go through.

#3 bluelotus

 
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Posted 07 November 2005 - 08:57 AM

I can't answer all your questions, but your symptoms sound along the lines of celiac disease. There was a thread recently where people listed all their symptoms. Do a search for it if you are curious. My symptoms would also fluctuate (while eating gluten constantly), which I think is why it takes so many people a long time to get dxd. If symptoms aren't consistent, its hard to pin down the culprit.
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#4 danikali

 
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Posted 07 November 2005 - 09:30 AM

Thank you so much for trying to help. I did also order the "gluten sensitivity stool panel complete" from enterolab. This is supposed to check for reaction of the immune system to gluten in the diet; Stool Test for Tissue Transglutaminase (Gluten-induced reaction of the immune system to one of the body's important enzymes, tissue transglutaminase, causing an autoimmune reaction that may damage the intestine and other tissues of the body, and may be related to the development of other autoimmune diseases); Stool Test for Intestinal Nutrient Malabsorption/Intestinal Damage (Malabsorption of dietary nutrients caused by damage of the small intestine, or sometimes lack of enzyme production by the pancreas).

I hope this was the right test to get to find out if I have a gluten intolerance. Does anybody know about these tests? And even if I don't have celiac, but do have some kind of gluten intolerance, would these tests show up positive?
  • 0
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

#5 Rachel--24

 
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Posted 07 November 2005 - 09:46 AM

Enterolab results will show positive if you are gluten sensitive or have celiac. Did you order the gene test as well? That would give you a better idea if you have celiac or not. The Enterolab tests are good..it looks like you've done your homework so don't worry. Its good that you're also getting the bloodtests as well. I dont know how long you've been eating gluten again but if it hasnt been long enough the bloodtests may be negative. Enterolab are suppossed to be more sensitive so if theres a problem it should show up in the test.
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Rachel

#6 danikali

 
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Posted 07 November 2005 - 09:53 AM

No, I didn't get the gene test. I figured that because I am going to the GI, she will be able to see if I am specifically a Celiac, but in case she does not get a positive for celiac, I wanted to go through enterolab to see if I am gluten intolerant. Am I wrong?

I've been eating gluten for the past 2 months almost. Before that, I was on it, then off, then on, and so on. (Because I didn't have a test done, I felt like I had to "make sure" I was intolerant to gluten, so I would eat it to get a reaction. And I always would, but then I also found myself getting very sick sometimes, trying not to eat any gluten at all. Though I later found out it's in more things that I thought!)

Anyway, all I want is "proof" of something somewhere, because I can't believe it 100% if I don't get that, do you know what I mean? I really am driving myself crazy these days! haha.....it's actually not funny!
  • 0
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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