Author: Sorting Last Post on Top ↓ Message:
DOTSLADY's Photo DOTSLADY Posts: 10,024
6/17/11 7:32 P

My SparkPage
Send Private Message
Reply
To the persons affected by dark colas, it may be the caffeine, which is a gut irritant. Do you drink coffee and does it bother you? Chocolate? We can cross-react to other foods, even gluten-free. Dr. O'Bryan talks about it and I know I've shared links of his before. I just got tested for cross-reactive foods and was positive to quinoa, milk fat, and barley (yeah, I said barley). I'm on the border w/buckwheat.

Something to consider also would be genetic testing through an online genetic testing site like www.23andme.com ... I'm a little confused on the percentages, but celiac was high on my list of disease risk. Autoimmune diseases are prevalent on chromosome 6 I believe. You'd have to visit the site for exact terminology because they also say it's not exact. The cost is $99 + a $9/mo commitment on autopay through your cc which I believe you can cancel after a year. There are other payment options available, so check it out.

I wouldn't get the endoscopy, personally. I think everyone w/the genes should be gf though. :)

(I don't usually say this, but my blog may be of interest today because I mention new tests from Cyrex Labs. Also, you might want to check out www.enterolab.com stool antibody tests. I thought they were good up to a year on a gf diet, but since you've been glutened it might still be worthy of contacting them to discuss. My daughter tested negative to the celiac panel and biopsy, but positive to gluten, dairy, and soy via enterolab testing (not yeast or egg). The lab will also share DNA probability (which matched the DNA result I got on my 23andme DNA test).

Edited by: DOTSLADY at: 6/18/2011 (12:56)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,217 Days since:  gluten
 
0
812
1625
2437
3250
SAHEDGES01's Photo SAHEDGES01 SparkPoints: (60,237)
Fitness Minutes: (93,898)
Posts: 628
6/17/11 11:18 A

My SparkPage
Send Private Message
Reply
I had the same problem with my back a few months ago, so I tried stretching exercises like the ones here: http://www.spine-health.com/wellness/exerc
ise/exercise-sciatic-pain-piriformis-s
yndrome

It did take time (about three weeks) and I was hurting pretty badly for those three weeks, but have now been pain free for a month. I still do these stretches on a daily basis just for maintenance.

I hope it helps!

Sarah

Sarah Ann
- Kentucky

"I usually get myself into situations that cause sparks. I mean I'm a girl that likes the storms. I love feeling alive, I love walking out in the cold in my bare feet and feeling the ice on my toes." - Tori Amos



 current weight: 168.0 
 
180
165
150
135
120
CADYANN1's Photo CADYANN1 Posts: 105
6/17/11 10:55 A

My SparkPage
Send Private Message
Reply
Thank you all for the feedback. I know that going gf works for me and I have no intention of eating gluten again unless I have to. My main reason for even considering testing was to find out if this was something that my children may have, now or in the future. I have a young niece who just had the blood tests for celiac disease. If her tests come back positive, I think I will have our allergist test my daughter also. While I am gf, my family is not, and I want to keep them safe if there is a gluten issue for them.

Tammy (West Virginia)


 current weight: 139.4 
 
142
140.25
138.5
136.75
135
HEALTHY4ME's Photo HEALTHY4ME Posts: 4,148
6/15/11 9:04 A

My SparkPage
Send Private Message
Reply
Oh tight tummy!! I so agree and right now am a walking pharamcy. I hate it but need pain relief.... I am doing a few exercises that I know to do and will go to physio to set up an apt today. I don't like going to the physio that I have to go to as they direct bill my insurances. They know me but didn't do well by me the last time, perhaps I will go to the one that direct bills one of my insurance co. I so don't want to go to the other.
Well today is getting my workers comp started, and then get a few groceries as hubby will drive me till I see how dizzy I get.
thanks for any info so far.

Atlantic time zone



Cindy in Atlantic Canada

To accomplish great things, we must not only act, but also dream, not only plan but also believe.

If you want something bad enough, you will find a way, if you don't you will find an excuse.
ALWAYS BELIEVE IN YOURSELF!!!!!!


2 Days until:  100 days wt loss with linda spangle
 
50
37
25
12
0
TIGHT-TUMMY's Photo TIGHT-TUMMY SparkPoints: (18,072)
Fitness Minutes: (8,798)
Posts: 1,575
6/15/11 8:39 A

My SparkPage
Send Private Message
Reply
Patient: "Doc, it hurts when I do this..."
Doctor: "Then don't do that."

I couldn't find ANY reason to get an "official" diagnosis. The cure is to eat GF - I don't need a note on a piece of paper to tell me that.

Our Dr was great in saving us the time/money/discomfort of further testing. She said doctors don't even check past diagnosis - if you say you have something, they will treat you accordingly (i.e. prescriptions).

Janae
One day at a time...make that one craving at a time!


 current weight: 132.0 
 
135
133
131
129
127
CHRISECORLISS's Photo CHRISECORLISS Posts: 30
6/14/11 11:12 P

Send Private Message
Reply
I Know I' ve said this before on this forum but why would you poison your self just to convince a Dr. that you have a sensitivity/allergy? Especially if you are doing so well now. Just so he/she can tell you to go on a GF diet officially. Eh gad when did we all become slaves to the medical profession. Maybe if we all stood up and said no then they'd put some effort into finding a better way.

BTW I am not celiac, I am allergic. And no one's making me eat gluten again!

CINDYTW Posts: 5,783
6/14/11 10:20 P

Send Private Message
Reply
HEALTHY4ME Try it and see! There is no starch or sugar for candida diet which is automatically GF.

 current weight: 187.8 
 
195
181.25
167.5
153.75
140
HEALTHY4ME's Photo HEALTHY4ME Posts: 4,148
6/14/11 9:53 P

My SparkPage
Send Private Message
Reply
I am new to this team, and not sure about gluten bothering me, but the mention of peripheral neruopathy - I am at this time suffering from sciatica baddddddly. My left foot and ankle are all pins and needles ( no I am not diabetic nor pre) my calf is so sore as is my hip. I have suffered from bursitis, have arthritis in both knees and other pains. I have many symptoms that are also the same for candida. I am wondering if you people here think the diet for the two of them are so similar that I can do one or other and be helping both.
I haven't mentioned to my dr as did say gluten and he just looked at me and shook his head. I love my dr but he is getting to busy to get in to see him.
Anyway right now am on arthrotec for arthritis, nexim cos of the arthrotec, and now morphine for pain, very low dose but that can mess with belly and bowels. geeh I only want to get healthy and able to exercise! I did exercise most of May but now can barely move.
thanks for any ideas!
Cindy

Atlantic time zone



Cindy in Atlantic Canada

To accomplish great things, we must not only act, but also dream, not only plan but also believe.

If you want something bad enough, you will find a way, if you don't you will find an excuse.
ALWAYS BELIEVE IN YOURSELF!!!!!!


2 Days until:  100 days wt loss with linda spangle
 
50
37
25
12
0
DJ4HEALTH's Photo DJ4HEALTH Posts: 43,399
6/14/11 9:53 P

My SparkPage
Send Private Message
Reply
I heard that same thing from my rhuemy and every thing that I read said that you have to be on gluten in order for the test to come back positive and then that is not guaranteed that it will come back positive.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


 current weight: 224.0 
 
274
235.5
197
158.5
120
GFNOMAD's Photo GFNOMAD Posts: 1,520
6/14/11 12:55 P

My SparkPage
Send Private Message
Reply
I agree with what everyone has said so far. The doctors are behind the 8 ball or it's a case of cya. What is hugely underestimated is gluten senistivity/intolerance and now there are studies confirming this. Don't get hung up on the diagnosis of 'Celiac Disease' as there can be just as much damage overall from gluten intolerance. And this being one of the few diseases that can be healed by a changed in diet I find amazing. In the USA, I've heard of many instances where a diagnosis of CD is the excuse by insurance companies to refuse insurance. But then in some cases you need tthe diagnosis to get a gluten free diet if youi happen to be in hospital or a care home. Maybe the doctor is looking for residual damage. Ask more questions and do what you feel is right in your gut. Just the fact that you are coming here and asking the questions seems to indicate that you don't want to have the endoscopy. What will be the result if it comes back negative - he saying you don't have CD? And then what?

Edited by: GFNOMAD at: 6/14/2011 (12:55)
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


 current weight: 134.4 
 
151
144.5
138
131.5
125
CINDYTW Posts: 5,783
6/14/11 10:45 A

Send Private Message
Reply
I think that the doctor may be looking for residual damage. However, if you are healed there won't be any. I think genetic testing might be an answer, but also I asked about that at my GI doctor's office and the PA said it could be inconclusive also. It is a tricky disease to diagnose, all the tests are fallible unfortunately.

 current weight: 187.8 
 
195
181.25
167.5
153.75
140
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
6/14/11 10:13 A

My SparkPage
Send Private Message
Reply
I know some doctors that like to do the Endoscope once a year to determine the rate of healing or to see if you are still getting some gluten in your system.

Sue, I had the same problem with any dark colored soda after going Gluten Free. But the soda companies insist that the caramel color is safe and most are listed. My doctor thinks it is the carbonation that is bothering me. But yet I can drink light colored sodas without a problem.


Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
 
248
235.75
223.5
211.25
199
SUEBNELSON SparkPoints: (70)
Fitness Minutes: (0)
Posts: 12
6/14/11 9:59 A

Send Private Message
Reply
I went off gluten a year ago at the advice of my physician - "to see if it made me feel better." I pleaded with the doctor to give me the endocscopy, but she insisted that I had IBS. Even though I knew better, I went off, taking her advice that I could go back on again if I needed to be tested. Unfortunately, I have found that trace amounts of gluten (even the carmel color in Diet Coke) causes terrible side effects. I can't go back on as the side effects of gluten are TERRIBLE. (I lose feeling in my extremities for months.) Anyway, don't believe your doctor. You will spend money on a futile test.

I have the same concerns for my children. (I also have a ton of food allergies.) I still don't know for sure if I have celiacs or just a food allergy to gluten, and it would have been SO helpful to my family and my mother for me to know. It is frustrating.

There is one hope, however. You can get a genetic test to check for the propensity for celiacs. A positive test doesn't mean that celiacs is currently active, but that you could have it. HLA-DQ2 and HLA-DQ8.

Good luck. I am now fine with not knowing which is my problem as all of the following have cleared up for me...Peripheral neuropathy, elevated liver enzymes, diarrheah (4 years), terrible insomnia, brain fog and loss of short term memory. I feel ten years younger now and couldn't be paid any amount of $ to try gluten again...just so that the doctor's believe me. Who cares. I know for myself.

As for your children...I would check for the genes. I would then do the endocscopy. And then I would do a month of elimination diet to see if you see improvement.

CADYANN1's Photo CADYANN1 Posts: 105
6/14/11 9:35 A

My SparkPage
Send Private Message
Reply
I've been on a GF diet for 14 months and it has greatly improved my quality of life. I have been "glutened" several times during this time and it has made me very sick.

Yesterday I spoke to my mother's gastro doctor, who is considered to be very good in our area, and he said that I could have the endoscopy to determine if I have Celiac Disease (as opposed to just gluten intolerance) even though I have been GF all this time! I find this hard to believe, since it's been over a year, but he said I would still have "markers." I had the blood test after I'd been GF for 4 months and it came back negative (no surprise to me).

I'd like to find out if I do have Celiac Disease, for the sake of my children...one of whom has multiple food allergies. I do not want to have to eat gluten again if it cannot be helped, just for a test. Is there some other kind of test I could have that would reliably indicate CD?

Tammy (West Virginia)


 current weight: 139.4 
 
142
140.25
138.5
136.75
135
Page: 1 of (1)  

Report Innappropriate Post

Other Celiac Disease and Gluten-Free General Team Discussion Forum Posts

Topics: Last Post:
Gluten withdrawals? 5/30/2014 9:14:30 PM
anyone have dermatitis herpetiformis? 11/13/2013 10:29:32 PM
Gluten Free menu Planner - Free! 9/30/2013 2:01:46 PM
gluten problems 9/15/2013 11:24:07 PM
Teff Flour 3/4/2014 12:28:55 PM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x948x42419151

Review our Community Guidelines