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ADAJLIM's Photo ADAJLIM Posts: 4,633
7/7/08 10:35 A

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Thanks NORMAMURIEL! I was thinking it was just an allergy and taking Digestive Advantage which really has worked for me. I will have have to do some serious research on celiac disease because I do not want to look forward to a life of misery! Already been there and done that with my epilepsy. Thanks for the tips and the website!
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Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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NORMAMURIEL Posts: 106
7/7/08 10:27 A

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ADAJLIM:

First off how does your doctor know your villi in your intestines are damaged? I think you need a biopsy for that, and if that is what happened, just what was he looking for to do this type of test in the first place. You need to find another doctor, PRONTO. Just because he has a MD after his name doesn't make him all knowing and right, and if he is doing test but doesn’t understand the outcome I am afraid for you.

First off a simple blood test can confirm any suspicions you or the doctor has, no major surgery is needed. Second after being off gluten, as little as 3 days in some cases, your villi will start to heal. What you have to understand is, it is not going to be choice for you, if you are truly celiac it is not like an allergy that you can pop a pill and then eat what you want, or live with a few days of discomfort. It is an auto immune disease with no known cure, except for remaining gluten free. If you choose to ignore this you can look forward to years of pain and needless suffering and than in the end expose yourself to intestinal CANCER. (There is one thing to note, if you do have the blood work done you have to be on gluten for a few months or the test will come back negative.)

I suggest you use some of the money you have been paying this doctor and buy the book “Living Gluten-Free For Dummies. By Danna Korn founder of R.O.C.K (Raising Our Celiac Kids) and one of the foremost experts.” the advice is written in terms you can understand and will enlighten you as to how dangerous this disease can be if you ignore it. This is not something you should play around with, get the book read it and then get to a doctor that understands this disease, because that is truly what it is a disease not an allergy.

I am sorry if I seem upset, but this is a very serious disease and should be treated as such. So many people, including on this board, fluff this off as a “No Biggie, I will try to be good some of the time” allergy, it is not. This type of attitude is what makes it harder for those of us that understand the real implications. It is hard to get people to understand this issue and educated themselves when the attitudes of the people that surround us are “It is all in your head”! I count myself lucky that my family, while not understanding it at least supports me. I guess the call from a cancer specialist needing me to come in because my blood work came back funny did the trick.

Here is a website that has a lot of good information on it. Take some time and go through it, it might just save your life.
www.glutenfreeceliacweb.com/category
/c
eliac-tips/


ADAJLIM's Photo ADAJLIM Posts: 4,633
7/7/08 10:20 A

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Dear GFNOMAD~Thanks for your response! I know that doctors nowadays are so busy and probably don't keep up on the latest research but he didn't even suggest any tests! I know that you have to be your own advocate when it comes to your health. Maybe I will have to give the thought of going gluten free another thought! The idea of feeling healthy and without stomach aches or those bumps on my skin sounds more appealing to me every day! I didn't know that there were any support groups for people who had this problem, though probably not in my community. I will have to come to SparkPeople for my support!
Thanks again!

Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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GFNOMAD's Photo GFNOMAD Posts: 1,524
7/7/08 12:14 A

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I am stunned by the comment that your doctor made. Villi can recover in most cases if it is caused by gluten consumption. That is why it is so important to eliminate all gluten, obvious and hidden.
If the bumps are DH then you are celiac. That has been proven.
It was the comment "I would hate to have to give up all my foods that contain gluten!" that made me respond. You do not know how well you can be until you do make the commitment and eliminate it from your diet. I know from experience. Eliminating wheat is how I first discovered my gluten intolerance and I got a 'clinical diagnosis' of celiac. It was too long ago and the tests did not exist. It is true for both of you that if you are not consuming enough gluten, the blood test will not be positive. But Ada, you ** do ** have damaged villi!!!
I did not know the full impact hidden gluten or cheat days were having until I went to a support group that were so surprised that I didn't watch for hidden gluten. My doctor had never given me any information on it. And honestly, many doctors are not up to date on the latest developments and research. As well, so much more has been discovered in the last 5 - 10 years. These are the reasons I am so adamant that people must go completely gluten free. I am 61 and healthy - 1st surgery was for gall stones last year which run in my family and are common with celiacs.
good luck, Barb

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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ADAJLIM's Photo ADAJLIM Posts: 4,633
7/6/08 10:53 P

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Hi GFNOMAD~
My doctor just said told me that the villi in my intestines were damaged and I would have to live with it! That is when I started looking for something to relieve the awful pain! I found Digestive Advantage that lets me eat just about anything and no more pain! I just wanted no more pain especially after going through brain surgery!
I don't know if he would recommend being tested unless I press him for it. I am doing fine now except having those little bumps and trying to lose a little weight. Afraid to rock the boat!!
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Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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ILLINITEACHER52 Posts: 7,257
7/6/08 8:42 P

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Yes, I do realize that gluten is in more than wheat but that is how I initially figured out what I needed to avoid. I also react to corn so I have to be very careful to read labels on gluten free foods. LUckily I have no reaaction to rice, except weight gain if I overdo it. It probably would be good for me to be tested and I would have agreed to it if my Dr. had suggested it but now I am not sure if the test would be accurate.

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GFNOMAD's Photo GFNOMAD Posts: 1,524
7/6/08 7:53 P

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This team's name is Celiac Disease and Gluten Free for a reason. It is not a choice for us. It is obvious to many of us that you both need to be tested. You may not realize how much damage you are doing by just eliminating the gluten to relieve the obvious symptoms. Gluten covers much more than just wheat.

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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ILLINITEACHER52 Posts: 7,257
7/6/08 6:17 P

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The bumps I had on my legs and upper arms were red and did not look very nice. I went for years without wearing sleeveless tops or shorts as my doctor tried different ointments and medication (never even hinting at a gluten problem). I came up with the solution on my own after trying a diet that eliminated wheat and dairy. Back to being cool in the summer! Yea!!

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ADAJLIM's Photo ADAJLIM Posts: 4,633
7/6/08 5:53 P

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Hi ILLINITEACHER52~
I would hate to have to give up all my foods that contain gluten! The bumps don't hurt or itch unless I pick at them accidentally. I will have to make a conscious effort on whether or not to go gluten free!

Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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ILLINITEACHER52 Posts: 7,257
7/6/08 12:00 P

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I just get the little bumps also (not itchy), mostly on my arms and legs. Going gluten-free makes them clear up.

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BAMJ111's Photo BAMJ111 SparkPoints: (4,226)
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6/29/08 6:07 P

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i've never gotten bumps, but have felt like i was getting chaffed and irrated when i exercise and become more sweaty in the area. the other thing i've had to do is change to free and clear laundry detergents. remember whenever you have a rash to always drink lots of water, it helps to purify the body of things that are bothering the body.

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ADAJLIM's Photo ADAJLIM Posts: 4,633
6/29/08 5:25 P

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Hi BAMJ111~Does this skin rash have to be itchy? I do get these little raised red bumps but I thought it was just because the weather was getting warm and my hair follicles were overreacting to the heat. They do not itch but do not seem to go away either. Glad they do not itch!!!
Thanks!


Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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BAMJ111's Photo BAMJ111 SparkPoints: (4,226)
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6/29/08 1:30 P

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hi, i'm gluten intolerant, and i have had issues in the the past with the rash thing, i used A&D ointment, and desitin product on my rash, and drank lots of water, i know that if your reaction is severe a lot of the time the dr.'s will say to take oral benadryl which they now prescribe for everything, from chicken poxs,poison ivy, and other skin rashes. you can also soak in baking soda bath if the rash is bothering you a lot. hope this helps you some!

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CHICOYAYA's Photo CHICOYAYA Posts: 165
6/29/08 12:41 A

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Pippa, if your doc is trying to prescribe drugs for you, I would suggest finding another doc who is more knowledgeable about celiac disease/gluten intolerance.
Also, you do not need a doctor to order a lab test from www.enterolab.com and find out for yourself if you are producing antibodies to gluten. That is a sure indicator of gluten intolerance.
One of the best books I have read so far (that explains things simply, in layman's terms!) is Living Gluten Free for Dummies by Danna Korn. She also wrote Wheat Free - Worry Free which is also excellent. These two books have really helped me get a handle on what is going on in my body when I consume gluten. I highly recommend!

Edited by: CHICOYAYA at: 6/29/2008 (00:40)
~Deborah
Living out Hebrews 10:24-25

Diagnosed Gluten and Casein Intolerant 4/18/08.


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PIPPABROOKS's Photo PIPPABROOKS Posts: 22
6/28/08 3:03 P

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Thankyou so much for all the info!!!!!

Pippa Brooks


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POEKSTER's Photo POEKSTER SparkPoints: (111,030)
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6/28/08 3:00 P

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Thanx Barb, still ahve a bit to go .... I'll do it ... eventually.

Tess

"Real stupidity beats artificial intelligence every time."
-- Bursar 1 - Hex 0 (Terry Pratchett, Hogfather)

Never Give up .... and never surrender (Jason Nesmith)

DON'T QUIT...RECOMMIT ! ! ! (Hunk-Skunk)


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GFNOMAD's Photo GFNOMAD Posts: 1,524
6/28/08 2:54 P

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Tess, I just noticed your weight loss ticker!! emoticon Congratulations. That's awesome, Barb

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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POEKSTER's Photo POEKSTER SparkPoints: (111,030)
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6/28/08 2:36 P

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You're right Barb. I don't have CD, but I'm intolerant to gluten.

Tess

"Real stupidity beats artificial intelligence every time."
-- Bursar 1 - Hex 0 (Terry Pratchett, Hogfather)

Never Give up .... and never surrender (Jason Nesmith)

DON'T QUIT...RECOMMIT ! ! ! (Hunk-Skunk)


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GFNOMAD's Photo GFNOMAD Posts: 1,524
6/28/08 2:16 P

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PIPPA, if your doctor is not familiar with CD, then you need to make him give you a referrral to one who is familiar with it or take the articles in and educate him. Celiac Disease and gluten intolerance must be diagnosed while you are eating gluten. Too many people make the mistake of going gluten free and then the tests return negative because the antibodies are not present.
DH is an abbreviation for dermatitis herpetiformis. If this is what you have then you have celiac disease.
Gluten Intolerance and Celiac Disease are different.
Some people are "gluten sensitive" and may not produce IgA antibodies. Best to read articles at www.celiac.com
Barb (dx 1981)


Edited by: GFNOMAD at: 6/28/2008 (14:50)
Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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PIPPABROOKS's Photo PIPPABROOKS Posts: 22
6/28/08 2:04 P

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It is quite horrible!What does the DH stand for,do you know.I'm just trying to get this whole thing figured out.My doctor was trying to prescribe me somthing,but no more pills.I would rather find a dietary route.

Pippa Brooks


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GOLDENANGELFISH's Photo GOLDENANGELFISH SparkPoints: (14,846)
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6/28/08 1:58 P

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yes - there is a rash called DH i think...and it is definitely a form of gluten intolerance, though I believe it is less common than the typical digestive issues.

Mary

Mary

PS To my old SP friends - It's been a very rough journey... My beloved, healthy, athletic, tall, dark and handsome husband died in August 2012 from a very aggressive cancer... In the many months caring for him I was stressed and didn't "care" anymore, and put back on 30 pounds I had just finished losing... And then I gained even more...

A short, but very sweet, video tribute to this beautiful man:
youtu.be/i2-_1IJdPww


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ADAJLIM's Photo ADAJLIM Posts: 4,633
6/28/08 1:34 P

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Hey PIPPABROOKS! Sounds like you just might be gluten intolerant. Some of the most common symptoms of celiac disease include a itchy skin rash. Here is a good site to get some more info: www.celiaccentral.org. I did not get the skin rash but have severe bloating so I look pregnant all the time! I also had a bunch of the other side effects, too. Hope DOTSLADY is on today and she might have some more insights into this!! Welcome to this site!! emoticon

Dance as though no one is watching you, love as though you have never been hurt, sing as though no one can hear you and live as though heaven is on earth.


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POEKSTER's Photo POEKSTER SparkPoints: (111,030)
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6/28/08 1:33 P

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Gluten is an intolerance, the little buggers attack your intestine and that's how you react. There 's much more to it then just a reaction. Your intestines don't take in enough vitamin's and minerals ... that causes a lot of other problems.

There are more substances in wheat you can react to. Most of the time it's a allergy. rashes are normally associated with allergy. Your rash is most probably a wheat allergy, not gluten intolerance. Although you can have both. Rash can be a part of it. The result is the same: avoid wheat.

Edited by: POEKSTER at: 6/28/2008 (13:35)
Tess

"Real stupidity beats artificial intelligence every time."
-- Bursar 1 - Hex 0 (Terry Pratchett, Hogfather)

Never Give up .... and never surrender (Jason Nesmith)

DON'T QUIT...RECOMMIT ! ! ! (Hunk-Skunk)


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PIPPABROOKS's Photo PIPPABROOKS Posts: 22
6/28/08 1:21 P

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Hey guys,think i'm gluten intolerent.Seems whenever I eat wheat product I get the worst rash on my you know what.It's been horrid for days and going to the restroom is quite awful.Do any of you guys expierience this?Is it just me.I bought a bunch of Amys gluten free vegan products and gluten free millet bread.,baking flour by Bobs red mill.Seems if I go gluten free this clears up.Does anyone else expierience these symptoms when they do gluten,or is it normally just digestive problems? emoticon

Pippa Brooks


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