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PILAR2873 Posts: 5
1/16/09 11:13 A

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I had all the tests done that could possible be done (Cat scan, gall bladder tests, blood tests, and the list goes on)and no conventional doctor could figure out why I was still feeling so terrible after eating. I went to a homeopathic doctor that suggested the maybe I should give up wheat and gluten for 6 weeks and then see how I felt. It was amazing the transformation! I no longer got stomach ache, cramps, headaches, lethargy, dizziness, bowel issues etc after eating. Eating was a joy again. Learning what I could and could not eat took awhile, but I eat the same basic food almost every day. I have found substitutes for what I cannot eat and given up what has no substitutes. In the long run the extra cost of the food will be offset by my health. I have changed my entire families eating, but at times will just vary the meal so I can eat it (my burger in lettuce wrap, their's in a bun). So all that to say, if you do it for a few weeks and feel better-then you know that you have an issue. If you do it and do not feel better then there is something else to investigate

SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/14/09 8:02 P

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Ruth, I understand, it frustrates me too when I have family members who complain about a issue, I know is related to Gluten sensitivities, and they refuse to try going GF. They would rather deal with the medical issues around it then have to live a life GF. No thank you. For the first time in my life, my hands do not itch. my skin is clear. I am loving it! no more visits to the dermatologist. No more gallons of hydrocortisone. my sisters doctor even just told her it could be 4-6 weeks for her intestinal problems to go away.

~melissa

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
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1/14/09 7:47 P

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I actually can't even go into a KFC because of the flour in the air from when they put the chicken in the fryer (I get a reaction from breathing it). Also, if they used the same grease to fry both their chicken and their potato strips, you have cross-contamination issues, so they might not have lied to you, but there are other ways you could have gotten gluten. Iron Eagle, 3 days really isn't long enough to see any clear results from going GF. I didn't really begin to feel better until I was off gluten for about a week and a half, and I've read somewhere that, if you are celiac, you will not absorb nutrients correctly for about 6 days after you eat gluten (I think that is assuming that you start with a healed gut to begin with, though....It seems to me that, the more damage that has been done to your gut, the longer it will take for you body to begin working the way it is supposed to). If you are worried about celiac disease or gluten intolerance, I would recommend EnteroLabs and their genetic testing--that leaves no real doubts about whether gluten is an issue with you, since I don't think that you can have a false negative on a test for a gene sequence (what I did, and I will likely get the same done for my kids when I have them). Both stool and gene testing costs about $450, if I remember right, but your medical savings account, if you have one, will cover it. I really couldn't tell you if your insurance will cover it or not. Besides, I know that some people are leary of having insurance know what genes they have. The unfortunate problem with the blood tests is that they never have a false positive, but it IS possible to get a false negative, and it is like a pretty high percentage if you get a negative--like 30 or 40 %.

If you really don't trust the saliva test that your Dr. did, then you have a couple of choices: 1. go to a gastro, get a biopsy done, and make sure that they do enough slides to really make sure (from what I read, it takes somewhere between 15 and 20 slides from different places in your intestines to tell), because 5 slides just doesn't cut it. 2. really give the GF diet a try--at least a month. When you are doing an elimination diet for regular allergies, doctors require you to do at LEAST 2 weeks(and man was it hard for me to go without milk products for so long, let me tell you!), so that would be the minimum to really see if there is any difference....with celiac, it takes longer because of the way our gut heals, so that is why I recommend a month, although 2 would be better. 3. Assume the test is unreliable and go on as you have been. Just know that, if is IS celiac and you are ignoring this positive test because you just don't want to be on the diet, then you are increasing your risks of stomach, intestinal, and colon cancer exponentially, AND you are basically starving yourself to death by staying on gluten. I know that the diet is hard, and I am reminded of it every time there is a potluck at my school....believe me, I wouldn't wish this disease on my worst enemy, and I have actually thought about not ever having kids so that I don't pass on this defective gene, but if you do have it, wouldn't you rather deal with that reality than pretend it doesn't exist and put yourself in an early grave?

Ok, sorry about getting on my personal soapbox. It just annoys me when people refuse to get tested when they know that this disease runs in their family because they don't want to have to follow a GF diet. Personally, I would never go back to a glutenous diet because I feel so much better now than I did then.

My 2 cents anyway....

Ruth



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DPRIM1's Photo DPRIM1 Posts: 919
1/14/09 5:19 P

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Hi, I thought I'd put my 2 cents in I had the saliva test and actually it was negative, but the other parts of the test indicate that it could be a false neg, so my nutritionist recommended that I stay off of gluten, I have had anxiety attacks for 8n years and some other little stuff. I do want to suggest since you have insurance but a new deductible(I have no insurance) so I understand, try eating gf and tell by that if you feel better you have your answer,I would like to know is how long after you eat something with gluten does it take to feel better? I ate something at church on sunday and with in the hour I was having very bad gas pains that I couldn't relieve, and I have had it a couple of times in the evening since then, I'm trying to be careful and not get any but I ate at Kfc and they told me the potato strips weren't coated, but I think they lied!! So just trying to get an idea of what happens to some of you also! Thanks, Debbie

Debbie
Be still and know that I Am God! Psm 46:10



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DOTSLADY's Photo DOTSLADY Posts: 10,015
1/14/09 3:14 P

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I don't know enough about the saliva test to talk about it. You could also consider the stool test through www.enterolab.com . I think the test runs around $125 or so for the gluten only test. I would suspect what your naturopath says is true about the leaky gut part though. I inadvertantly went gf when I was 19 when I did a liquid protein and broth diet for 10 days - and I never felt better in my life. While the bouillon cubes I used likely had gluten, I was pretty gluten/or any food allergen free for those 10 days. I SERIOUSLY doubt I'd have tested positive for celiac back then. I DID have symptoms, unlikely as they may be considered by some: ADD, eczema, anxiety, depression, some insomnia (ho-hum - who doesn't have those symptoms?).

After I was diagnosed w/hypothyroidism in my mid-30s in mid-90s, I also tried again a wheat/sugar free diet and felt fabulous. Depression, anxiety and eczema was worse by this age (exaccerbated by stress), fibromyalgia-type achiness and pain, more insomnia, sometimes anemic, incredible old age feeling, add in a few diarrhea episodes attributed to "whatever" and sloughed off as insignificant.

Fast forward to my mid-40s in '06 when I could add "stattorhea" to my list, hair loss, memory loss/dementia. And then finally the celiac diagnosis. My gut progressively got leakier, yes? I definitely say yes. My gastro told me I did this to myself (still processing that statement, btw) and I can sorta agree.

The stool test might really help add fodder for the cannon. You could also ask a gastro about a leaky gut test? I think there's a test for gut permeability (people w/IBS should consider this also)... lactulose/mannitol or something. That's if you are feeling it's worth it - not sure, so talk to your doctor.

www.leakygut.co.uk/testing.ht
m


Maybe all you'd have to consider giving up is wheat and rotate your foods?

Lastly, after all is said and done based on results, THEN do the gf diet. After 4-6 months (one month should be telling, sometimes one week depending on symptoms) see how you feel, like Melissa said.

That's all I can think of.

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
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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
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IRONEAGLE48162 Posts: 23
1/14/09 3:13 P

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I tried eating GF for 3-1/2 days. I didn't notice any difference. (Although I don't know if that's long enough to, anyway.) The only thing I did for those 3-1/2 days was cry and obsess about what in the heck I was going to eat for my next meal, since I'm such a darned picky eater. I think that if I am gluten intolerant, I'm one of those people who doesn't have symptoms. Because of that, his diagnosis really hit me out of left field.

I am hypothyroid, though, which is the original reason I went to the naturopath. Through the saliva testing, he found that I was all messed up-adrenal fatigue, imbalance hormones, poor immunity, etc. I've read that gluten intolerance can precede thyroid problems, so I don't really know if his diagnosis is right or not. This stuff is so confusing for me.

SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/14/09 2:39 P

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My question for you is do you feel better when you eat GF? If the answer is yes, then I would suggest to stick with it. If the answer is no, then I would suggest continuing your investigation. If you haven't been eating gluten, that test is going to be negative. Plus, there are a high percentage of false negatives.

Good Luck at whatever you decide to do. Keep us in the loop.

~melissa

PS, here is a good listen for you, my nutritionists do a radio show. they recently did a show about Gluten sensitivities on November 15. Take a listen. You might learn a few things....I did.

www.weightandwellness.com/dun_radio.
ht
ml


Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
IRONEAGLE48162 Posts: 23
1/14/09 2:30 P

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Hello all,

As some of you may know from my previous posts, my naturopath diagnosed me with gluten intolerance 2 weeks ago through a saliva test. My gliadin levels were at 44, while normal levels are 12 or below.

Thanks to some of your advice, I asked him to do a blood test to confirm his diagnosis. I found out yesterday the blood test was negative, but he said it would only be positive if I had leaky gut.

What are your thoughts about getting a second opinion? At this point, I don't know if I should just go gluten free or if I should go to a gastro for a second opinion. Since this is a new year, we have a new health insurance deductible to meet, and DH's hours have been cut the past few months to about 35/week. On the other hand, I don't want to have to do this diet and radically change my lifestyle, either, if I don't have to. I'm on the fence; some advice would be greatly appreciated.

TIA!

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