Diet Changes and Diagnoses

UkuleleLady · Post by **UkuleleLady** » Sun Jan 11, 2015 5:31 pm

Hey y'all, just visited my MIL who had a lobe removed from her lung due to stage one cancer. She's at a hospital out in Odessa, TX, very good care and she seems to be recovering well.

Had a chat with her nurse who was super friendly and sweet. I mentioned I was GF/DF, and she asked why, I said colitis.

She proceeded to tell me that she was diagnosed celiac via biopsy, went GF for 8 years, then after moving a new GI gave her a blood test for celiac, which proved she didn't have it...so she's back to gluten etc. of course she told me she has IBS.

It's not possible for the blood test to supercede the biopsy, am I right?

I just nodded and listened but didn't get into it because, well, she's a medical professional and I'm just a gal with MC.

But I'm glad for me I know what I know about gluten.

Cheers,
Nancy

brandy · Post by **brandy** » Sun Jan 11, 2015 5:47 pm

Wow, just wow........

Gabes-Apg · Post by **Gabes-Apg** » Sun Jan 11, 2015 5:54 pm

The exact same thing happened to my friend who is naturopath. Was having digestion issues, Tested positive to celiac blood test. Gave up gluten for 8 years. She is Italian, so going gluten free was a big change to her lifestyle.
4 years or so later, she started to eat gluten again to see what would happen, small amounts a few times a week. Since then, her blood test for celiac comes up negative, albeit when she had colonscopy, there is villi damage. Based on what I have shared based on my learnings from this forum, she is now 100% gluten free.

This is why the enterolab tests are way more accurate than blood tests.
And why a negative result to the celiac blood test is 'bulls#*t' and should not be relied upon as the main diagnostic device.
The amount of gluten one would have to consume, and for extended period of time for the issue to show up in a blood test is massive, by then there is some serious damage to the gut....

Sheila · Post by **Sheila** » Sun Jan 11, 2015 6:12 pm

For a medical professional she doesn't have any common sense.

Sheila W

UkuleleLady · Post by **UkuleleLady** » Sun Jan 11, 2015 8:05 pm

It's sad. I guess her symptoms aren't bad enough for her to search deeper.

Ultimately I think the fault lies with the new GI. They never question their findings. Of course he reversed her diagnosis.

Also I think many people have an addiction to gluten. This is something I've been pondering as I know a lot of people with food and other additions.

I think glutinous foods are addictive, like drugs, and people can't see life without them. They taste good, they smell good, the rush of carbs, the sensation gluten provides to things, like crusty bread or pizza.

Food addiction is one of the more socially accepted and prevalent addictions too. It'll destroy you from the inside but you can still go to work, pick up the kids, pay the bills, etc.

Post by **tex** » Sun Jan 11, 2015 10:07 pm

Nancy wrote:She proceeded to tell me that she was diagnosed celiac via biopsy, went GF for 8 years, then after moving a new GI gave her a blood test for celiac, which proved she didn't have it...so she's back to gluten etc. of course she told me she has IBS.

Wow! Talk about the blind leading the blind.

I agree with Sheila — that nurse should know better than to just trust that GI doc implicitly, because he's obviously just plain ignorant if he doesn't even understand the basics of diagnosing and treating celiac disease. Published research clearly shows that unless there is at least a Marsh 3 level of small intestinal damage (villus flattening), the blood tests will virtually always show a negative result. That's why it takes so long to get an official diagnosis, because as Gabes pointed out, it takes a long time eating gluten to accrue that much intestinal damage.

The GF diet eventually removes the intestinal damage (after several years), but the blood tests will show negative results within a few months after adopting a GF diet. How could a doctor get through med school and not learn that, let alone be certified as a gastroenterologist? No wonder 80 to 95 % of celiacs are never diagnosed. A positive celiac blood test result definitely means something (it means celiac disease), but relying on a negative celiac blood test result for anything is just plain stupid, IMO, considering their poor sensitivity and low reliability.

Gabes wrote:Gave up gluten for 8 years. She is Italian, so going gluten free was a big change to her lifestyle.
4 years or so later, she started to eat gluten again to see what would happen, small amounts a few times a week. Since then, her blood test for celiac comes up negative, albeit when she had colonscopy, there is villi damage. Based on what I have shared based on my learnings from this forum, she is now 100% gluten free.

This is why the enterolab tests are way more accurate than blood tests.
And why a negative result to the celiac blood test is 'bulls#*t' and should not be relied upon as the main diagnostic device.

Gabes, exactly! Your friend has demonstrated how one can develop a tolerance for gluten (even though the damage to the intestines continues to increase).

And yes, gluten is definitely addictive, especially to certain people. So is the casein in dairy products. During digestion, gluten produces peptides that are known as gliadorphins, that can react with opiate receptors in the brain. Casein also produces peptides known as casomorphins during digestion, that can react with opiate receptors in the brain.

Tex

nerdhume · Post by **nerdhume** » Mon Jan 12, 2015 5:09 am

I don't know why some doctors act as if the are God himself. There are so many unknowns as to what causes colitis and what treatment will work for which patients. At least my GI admits this

as he suggests WE do whatever works for us.

twirlitgirl · Post by **twirlitgirl** » Mon Jan 12, 2015 10:04 am

Wow, this DR sounds like the GI after my colonoscopy results when I mentioned the word gluten free he said but you don't have Celiac disease the blood test shows that. You just have microscopic colitis which is a nusance and will go away in a few weeks and you can eat anything you want just take some pepto bismol with it and you will be fine. I could cry now thinking if I hadn't found this forum with all you loving people where I would be, sure not feeling as great as I do, knowing "i am not alone in this disease" thank-you for being friends from a distance but so close in the spirit of this disease and how it affects all aspects of our life, nobody knows how much patience they have until they have this disease and the ups and downs we have all gone through eh! It is very difficult to explain this to anyone else who chooses to just call it IBS symptoms because MC is not being respected " just a nusance disease" and it is so much more than that, complex and with lots of trial and errors , it is manageable. We have to make our choices for what goes in our body, no matter what is in our environment, we have to love ourselves that much and the people who matter in our lives must support and understand, the other nay sayers, well, they don't count. ( social situations where food is involved, the looks or the comments,) with a big smile " I now say," I have been given a gift that I can heal and learn how food affects my health , so I love my life and want to live each day feeling the best I can and , it has not been easy, but I know my food choices are healing my body, and that is a good feeling" it works to change the subject and I walk away feeling happy, not miserable. thank you to everyone who puts information on here, whether big or small each bit of knowledge you share helps someone. pat yourselves on the back, and big hugs from afar....

Lora

Post by **tex** » Mon Jan 12, 2015 12:52 pm

Lora,

Thank you for your very inspiring post, and for sharing your insight.

Tex

twirlitgirl · Post by **twirlitgirl** » Mon Jan 12, 2015 1:16 pm

Hi Tex,
thanks for your reply, I appreciate the nice comments. makes me smile

Lora

jmh · Post by **jmh** » Mon Jan 12, 2015 4:37 pm

UkuleleLady wrote:Also I think many people have an addiction to gluten. This is something I've been pondering as I know a lot of people with food and other additions.

I think glutinous foods are addictive, like drugs, and people can't see life without them. They taste good, they smell good, the rush of carbs, the sensation gluten provides to things, like crusty bread or pizza.

I have to say that I wholeheartedly agree. Especially when you consider how many of the glutinous foods are also laced with sugar or sweeteners of some kind. Just tasting something sweet can set off some horrendous cravings! It's mind boggling!

Judyu