Undiagnosisable

[adrianak]

Hi All,

This is my 1st time posting but I have yet to be diagnosised with anything except a very low B12 and High reactive protiens. I have had a colonoscopy, endoscopy, capsule endoscopy, celiac blood test 2x, and a CAT Scan. I'm told I'm fine but the minute I'm off wheat and gluten I feel a million times better. GI Dr at the Celiac Center in NYC says there are a group of people out there who don't have celiac but are just gluten sensetive. I'm so gluten sensetive it isn't funny. I also know when I have eaten something because within a 1/2 hour I have a burning in my upper intestines, next day it's the gas 3rd day it's the diarreha. I swear I have celiac can that be possible without testing positive for it? Are there any other tests that I'm missing? The NYC DR says the B12 thing has nothing to due with Celiac but I read otherwise.

Any advice would be greatly appreciated.

Thanks

[Matilda]

...

[ravenwoodglass]

Hi All,

This is my 1st time posting but I have yet to be diagnosised with anything except a very low B12 and High reactive protiens. I have had a colonoscopy, endoscopy, capsule endoscopy, celiac blood test 2x, and a CAT Scan. I'm told I'm fine but the minute I'm off wheat and gluten I feel a million times better. GI Dr at the Celiac Center in NYC says there are a group of people out there who don't have celiac but are just gluten sensetive. I'm so gluten sensetive it isn't funny. I also know when I have eaten something because within a 1/2 hour I have a burning in my upper intestines, next day it's the gas 3rd day it's the diarreha. I swear I have celiac can that be possible without testing positive for it? Are there any other tests that I'm missing? The NYC DR says the B12 thing has nothing to due with Celiac but I read otherwise.

Any advice would be greatly appreciated.

Thanks

I just want to note that gluten sensitivity should not have the word 'just' in front of it. It can do just as much damage as 'true' celiac disease but in some the systems effected may be different. I am 'just' gluten intolerant by gene tests but my symptoms by the time I was finally diagnosed were just as severe and life altering and threatening as anyone with celiac genes. If being gluten free helps you there is no reason not to eat gluten-free. Do not think that you can cheat if you are not a full blown celiac, unless of course you want to continue the damage until your doctors say, 'yep your villi are now destroyed you have your diagnosis' you run the risk of severe neurological and other system damage that may not be repairable if you do.

[hathor]

Given your response, you clearly have gluten intolerance. You feel better without eating it. Celiac is just the tip of the gluten intolerant iceberg. The doctors shouldn't be telling you that you are "fine" simply because you don't pass their tests for celiac (yet). It could be that gluten hasn't damaged your villi observably yet, but is in the process of doing so. It would be silly to wait until damage is done before you cut out gluten. Further, gluten can injure other parts of the body.

A couple articles for you to read:

https://www.celiac.com/st_prod.html?p_prodid=1417

Open Original Shared Link

Remember, you don't have to have a doctor's OK NOT to eat something. If it hurts, don't do it!

I'm curious. Were you on or off gluten when you had your testing done? If you had gone gluten-free for any period prior to testing, the testing would no longer be valid.

[adrianak]

Thank you all for your advice an support. I was off gluten for some tests and back on for only a couple of weeks for some of the others. That's why I think they are not getting the results. I was going to go back to eating wheat and gluten after the last round of tests but my husband said are you nuts! And he was right of course. I have been wf/gluten-free for well over a month and the slightest slip up, basically because I'm still learning, I'm sick for 3 days. I'm going to request that my regular DR who also believes that I have Celiac order the gene testing.

I already have the nureological issues that's how I started with all the testing. I have numbness in my hands and feet. I lived with the runs for so long I thought it was normal. Anyway - I'll just keep plodding along. Life is much better being gluten free - I love it. Thanks for the sights to look at and I'll keep you posted.

Thanks again,

Ann

[kabowman]

Sounds like you have a very supportive husband...mine is also wonderful, takes care of family issues for me with his people and totally supports all we do at home, even though I know he thinks I can get carried away sometimes with the cleaning.

Now that you are admitting you need to stay away from gluten, for life, you should look at your kitchen and utensils if you haven't already. It can hide in your non-stick skillets, cutting boards, wooden utensils, sponges, etc. Replace them and keep them clean (non-gluten stuff only).

It sounds like overkill but two years down the road, I had not done that and finally realized that was still making me pretty sick and I had to bite the bullet and get all new. Actually, only the pots hadn't been replaced, everything else had been.

Stainless and enamel can be cleaned between but I try to avoid it. We have different cast iron skillets and I found I can't use my old baking sheets with all the cuts in them, I use only new or glass.

[hathor]

Gene testing will only tell you if what you have is most likely celiac or, on the other hand, nonceliac gluten sensitivity.

Many people have "celiac genes" without the disease. I suppose that, given your experience going off gluten, that plus the genes would be a good clue. (There ARE people with diagnosed celiac without the genes too, although not very many.)

If you have something like DQ1, too, not a celiac gene, that can tie in with neurological problems.