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STACIARN01's Photo STACIARN01 Posts: 114
1/19/10 2:44 P

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So, the original question is right up my alley!!
I have been tested negative for the 2 most known lab tests for gluten intol/CD. I had an upper endoscopy last Jan of 09' where the GI doc took some biopsies,but I wonder if there were enough taken? I don't think that they were looking for CD at the time anyway. I of course tend to overindulge around the holiday time from Oct to Dec and find that my symptoms of increased gas,chest region pain,& bloating are worse. Sometimes the gas/bloating is so bad that I can palpate my gut and feel&hear a sloshing sound. (I think that is excess gas).
I am a nurse and I work along side a lot of people that are so educated in the medical field,but don't know much about CD or even a gluten intolerance.

I met with a wonderful nutritionist last week that spent some time going over what I had printed out for her on the spark diet pages(thank you spark for that)!! She came to a possible conclusion that I am int he middle of the road with gluten intolerance. That when I consume too much of that type of food in a short amount of time yet over a few months I show the symptoms.....which I do!
So, a modified elimination diet is what I have to follow for the next 30days. Gluten/Dairy free(I am lactose intolerant anyway) is what I have to eat. To me it is difficult at times. I cannot help but miss the other foods. I have only lost 2lbs and I have started working out again like I used to. My pain did occur on Sun though and I am not sure why. Simethicone is my best friend! I just hope this works! 10 yrs is too long to cont getting these "attacks"....

Sorry this is so long! Thanks again to everyone that is lending an ear and educating us with all this fabulous info!!

Stacy


SW 138.4
CW 134.2
GW 130 9/12
Seems reachable right!?


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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
1/19/10 12:15 A

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Hi Deb, this journey has been hell. If you want, you can to share here to vent some steam with us. My first six doctors were $150 up front just to tell me they could not help me after an interview of 8 minutes. I learn and ask questions of nutritionists and homeopathic specialists, and chiropractors, etc... I do this so I can know what to ask and what to watch for in results and body responses. The journey has been uncomfortable but the doctor can only respond to dry facts; not feel the pain for me. It may also be the perspective of the listener; each professional tells me something different while discussing the same topic. Maybe if they did, they would out-law some of the pain I endure. Keep up the confidence to understand self.

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
DEBARM29 Posts: 9
1/17/10 7:01 P

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I am delighted that people have good doctors. I suppose I need to move then. Truly, I have not found a physician in my community that knows more than me about CD/GI. The doctors in my community have actually said oh yeah gluten intolerance and cd the new fad for this year. NO I am not testing for this. It is frustrating to say the least. I am delighted you are feeling better
and have good medical care.

MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
1/17/10 3:56 P

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Hi and welcome. I am a negative to the celiac diagnosis. However, if it were not for this team and further research I never would have discovered all the other ailments and weaknesses in my food plan. I never would have reached this nearly pain-free plateau by choosing to delete wheat and other grains including corn and chemicals from my diet.

I am a flat line on my cortisol tests sub-clinical adrenal fatigued, Sub-Addison’s Disease. I just got my recent test results. When a healthy score is a .60 average to 1.40 as the top score, my strong morning start score is only a .28 then drops to a .04. In the three years since my first inkling to my condition, I have changed dozens of actions and choices but still no improvement. I have altered my diet and gentled my activities as prescribed by my doctors, nutritionists, and the specialty books recommend. These professionals are familiar with the many dietary intolerances and true allergies that plague low adrenal people.

www.adrenalfatigue.com www.treatingandbeating.com www.vitamindcouncil.org emoticon

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
DEBARM29 Posts: 9
1/17/10 12:01 P

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Hi, Everyone makes very good points about getting tested. I live in an area where the doctors are not on board with testing for cd and don't give a rip about gluten intolerance. In my research the is NO TEST THAT CAN TEST FOR EARLY CELIAC.
The blood test for ttg is only positive because you have so much gluten in your body that it is causing damage. The bowel biopsy can be negative as well because you have mega feet of colon and the lab can read the test wrong or not get the area. You need like 25 biopsy sites and normally they do a few. Enterolab as suggested is a good place to start and affordable. Dr. Find has not published his research yet, however. That leaves you to the genetic test which only tells you if you have the gene for CD. If any test is positive and you have symptoms you are positive for at least gluten intolerance. If you have any relative that has a diagnosis of CD and you have symptoms of whatever then it is likely that person is at least gluten intolerant. Some other food for thought, my ttg test was only a little high because I went off gluten when I suspected this may be an issue and then got the test. The docs read it as negative and said no you do need to be gluten free.
I remained gf, my blood sugars were over 160 and are normal, my hemoglobin was 8.4 (very low) and it is now 12, my stomach pains and constant gas are gone. My asthma is gone and I have given up my 3 medicines for this. I did the genetic test and it was positive. My daughter is now 13, negative blood test, negative genetic test, positive stool test at enterolab. She has been gf for 2 years and does not have any more stomach pains and no more trips to the hospital. This is the most frustrating thing to "diagnosis" and personally I find the physicians complete idiots about gluten intolerance/CD

DOTSLADY's Photo DOTSLADY Posts: 10,018
1/15/10 10:17 P

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EveryBODY's different with regard to damage and healing I'm afraid. I can tell you I healed well by my 6mo tTG check, but not under the discerning reference range. I WAS under that range by the 1 yr mark.

Getting the blood labs would be your best first step so DO NOT change diet until you can get it. I'd only hope the sooner the better re: the test. Then you can move on. If you got a negative or inconclusive test, you'd always wonder if it was because he'd gone gf and healed a bit. You can be gf for up to a year re: stool test mentioned.

I wish I could tell you how much the blood labs were ... I'm guessing around $350 or less by my own experience (but covered mostly by ins). Check this out and call for more info: www.kimballgenetics.com/tests
.html
and/or glutensensitivity.net/labchar
ts.htm


Another thought to consider: put your "city name celiac support" in a search field and call them/go to a meeting. You can ask questions and get opinions. Maybe you're near a city which have annual free screenings?

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


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JENVOSE's Photo JENVOSE Posts: 1,132
1/15/10 11:11 A

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Dots - Thanks for all that you have added to the discussion. I've already found, in the resources, that there's a doctor listed who is about 30 minutes from here, so that's not bad at all. I have considered contacting them to see what the best course of action is.

Thanks for your explanation of the testing ... from a lot of other things I've read, it seemed much more invasive, anyway. If there's a possibility of a diagnosis from blood tests, that's much different. I was thinking a biopsy of the intestine would ne necessary.

However, I do suspect that all this testing will take some time. Do you think there's much difference in the damage done between continuing to eat gluten until the testing is done or going gluten-free and then going back to gluten later for testing?

Share your musical and weight loss goals with me at: teams.sparkpeople.com/pickgrinlose


 current weight: 195.0 
 
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DOTSLADY's Photo DOTSLADY Posts: 10,018
1/14/10 5:30 P

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Another point to consider about the "gold standard" diagnosis is cheating on the diet. Gluten-free-ers do it (I read about it all the time; my mouth's hanging open, but ...). IF you have celiac, then cheating or accidental gluten ingestion mean more in terms of your health (cancer rate or other health problems are higher).

Personally, my preference would be to want to know for peace of mind. That's just me. I would not trial a gf diet and then go back to gluten for a test. Read GF Living for Dummies by Danna Korn. www.amazon.com/Living-Gluten-
Free-Dumm
ies-Health-Fitness/dp/0471773
832/r
ef=sr_1_1?ie=UTF8&s=books&qid=126
3
508323&sr=8-1


I just posted a link for a NY Times article with a Q/A re: celiac/gluten questions to a gastro. I hope you can find it (posted it last night).

Another quick thought: You might ask the doc what kind of rate he could afford to give you re: blood testing, and start there. (If it's inconclusive, an endoscopy ups your decision. Then you can also consider gene tests - I know, mo money.) Docs do this within their circles and for people without insurance. No insurance saves paperwork? ;0)

Some people go to www.enterolab.com ; others don't believe in it. I can tell you I'm a gold standard celiac, I got my daughter tested via allopathic medicine (neg blood and biopsy).

Then I sent for an Enterolab kit. She was positive to gluten, casein, soy, not egg. She has two genes (one from me, one from DH whose mother was celiac). It cost about $560 to find this out. fyi. Gluten only test is available for about $110. It's a stool sample by mail kit. I was thorough, but she's not going gf or anything else. SHe's pretty grown and stubborn - but that's neither here nor there. I feel good I tried and know what I know. Keep in mind, since she has genes, I know she can trigger them any time, too.

Good luck.

Edited by: DOTSLADY at: 1/14/2010 (17:37)
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


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NOCUBY's Photo NOCUBY Posts: 14
1/14/10 4:46 P

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I had Celiac Disease for 15 years before it was diagnosed. By the time I found out what the problem was, my hair was falling out, I was severely anemic, I had horrible rashes and diarrhea and i couldn't hold down any food. I had never even heard of Celiac's Disease! It turned out that I was mis-diagnosed with fibromyalgia when the problem was gluten all along. It made my body hurt! A biopsy and blood test revealed the CD. If you don't have any health insurance, then by all means, try a gluten-free diet. Eventually, I became used to going without cake and cookies, and learned to find "hidden gluten" in many foods. Ingredients like "natural flavorings," "modified starches" and even "citric acid" often are made from wheat and contain gluten. Glucose is often made from wheat, so a lot of sweets are suspect. I don't bother buying gluten-free flour, because it is very high in calories and low in anything good, like fiber. I've become very fond of fruits, veggies and nuts because they are naturally gluten free. So your husband may want to try a gluten free diet to see if it helps. It won't hurt him, that's for sure. And I haven't found any tax advantage to having a diagnosis of Celiac's disease.

This year, I've learned that Self Love does not equal Self Indulgence. Anything worth having costs something. Self Discipline feels hard, but the rewards are worth it!


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JENVOSE's Photo JENVOSE Posts: 1,132
1/14/10 4:07 P

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TeddyBearDonna - You make some really valid points, which is why I questioned it in the first place. However, in our case, we do already know that there is celiac disease in the family (my husband's aunt has been formally diagnosed), so it seems to be a very likely culprit. I certainly know that some doctors do get have their favorite diagnosis (that old standby of "food allergies") is a common one in our area. Thanks for your input.

Share your musical and weight loss goals with me at: teams.sparkpeople.com/pickgrinlose


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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,883
1/14/10 3:51 P

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I have mixed feelings about this. If you are feeling what difference does it matter unless you have to have it for tax reason or other things. The only problem I see is a friend was told she had CD from her allergist and so she went GF. I talked her into going to a gastric Dr. who did the scope and other blood work and it was negative. To make a long story short she didn't have CD or or other G problems. Further testing revealed what the real problem was and she is now doing fine and eating G.

I am sometimes wondering now if Drs are jumping to CD as an answer and because of the way a person's insurance is they don't get the needed testing. They do the diet and do feel better but are covering up something else. Also if you know for sure you have CD than your kids will know it is in the genes.



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ELLEEYNORE's Photo ELLEEYNORE Posts: 6
1/14/10 3:06 P

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I believe your summation is probably pretty good, in that a diagnosis isn't terribly important if your symptoms improve with the diet changes. More than 33% of people are supposedly wheat/gluten sensitive, far fewer know that they are. I was recently told I am, and without technical diagnosis. There are things that go beyond celiac, like Leaky Gut Syndrome that can be problems as well. In addition to the diet, I've been using probiotics, acidophilis, soil based organisms and glutamine powder. The micro-flora in the gut are quite sensitive and the balance is key to our health. The inflammation from celiac can create Leaky Gut Syndrome and the environment can also be harsh for the micro-flora "good-guys" - which we tend to have less of already simply from poor diet, industrialized food sources and medications (both prescription and over-the-counter). I hope this helps.

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BAILEYS7OF9's Photo BAILEYS7OF9 SparkPoints: (120,977)
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1/14/10 3:05 P

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The only benefit for an official diagnosis is for tax purposes. The difference you spend on GF flour vs regular flour and then it needs to be so much $'s to write it off too.

IF your husband has gone GF already, note that you have to consume gluten before these tests. I was off for 1 month then went back on for 1 wk and came up negative on the blood tests. I had a lot of people say that I was not on gluten long enough and to do it again. I was NOT willing to put myself thru the pain of that again!

If he has not gone off gluten yet, then by all means, do the tests, if you have insurance for them that is. That could make a difference too.

End result is the same, Celiac or gluten intolerant means no more gluten.

Edited by: BAILEYS7OF9 at: 1/14/2010 (15:05)




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JENVOSE's Photo JENVOSE Posts: 1,132
1/14/10 2:35 P

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My husband's aunt has celiac disease, and as we were working for them for a few months last year, she mentioned that some of the complaints that he had were similar to the symptoms she had when she was diagnosed.

As I have been researching celiac, I realize now that there are a lot of other symptoms that could also be explained by celiac, other than those that he was experiencing at the time.

Also, as I have been researching celiac, I realize that an official diagnosis could be a costly process, especially as we do not have health insurance right now. And, although we are looking for health insurance at the moment, any official diagnosis in the next year or so would definitely be defined as a pre-existing condition, so it looks like we would be in for some major out-of-pocket expenses, either way.

However, from the research I have seen, the major form of treatment is simply a gluten-free diet.

My question is this ... What are the benefits of an official diagnosis of celiac disease? If one begins to follow a gluten-free diet and symptoms improve, is it enough to just continue following the gluten-free diet unless other, more serious issues arise in the future, and to get the testing done later if necessary to help diagnose other issues?

Share your musical and weight loss goals with me at: teams.sparkpeople.com/pickgrinlose


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