Please Help!

[GF-Canadian]

Hi everyone, I

[dizzygrinch]

Hi, I just wanted to say I can really understand what your going through, as most of us here can. I havent had a diagnosis yet, Im just at the point of trying to take charge of my own health. All my life, as far as I can remember, I have had severe stomach problems. I too, have to make all my plans, around a toilet! I use to joke that when I die, my tombstone shall be a toilet, since that is where I spent most my life. Anyway, I have been to the Mayo clinic, seen several GI docs, endo's, you name it, I have been there. I am 37, and been diagnosed with Rhumatoid arthritis, (unspecified), IBS, GERD, diabetes insipidus, exteme Vitamin D deficiancy, which I was told is very rare here in AZ, high blood pressure, now, I have had a sever gallbladder attack, and not one doctor has ever told me why. All Ihave ever had done, was prescribed medicines to cover up symptoms, like for a spastic colon, blood pressure pills, Prilosec, ranitidine, Immodium, dicyclomine, I cant even remember all of them. What surprises me, is I have had 3 colonoscopys, barium enema, upper GI series, I know Im forgetting something here, and especially the GI docs have always said, IBS, that is a blanket diagnosis, and just gave me meds for the pain and cramping... anyway, I was recently told by this last GI doc, that I have diverticulitis, flattened mucosea (spelling), evidence of peptic ulcer disease, but, Im NORMAL. Well, I dont know, but I dont think passing out, literally, passing out, in the bathroom durning a bowel movement, is not normal. But, this is what I have been going through ALL MY LIFE. Not one doc, ever, has even mentioned, that all these symptoms could be related to something I may be eating. I have only discovered this, by my own research. Oh, another thing, every GI doc says to increase fiber, eat whole grain bread, this last doc said to eat "Fiber One cereal, its the best"...so I tried, and just about died in the bathroom! I just assumed I cant eat "healthy" food, it wasnt until my own research out of desperation, did I realize that all these could be from what I have been eating, and sure enough, for me, it seems to be the wheat and grains, etc. Oh, couple of years ago, I did see an allergest, who did a skin test, and that showed an allergy to rice, bananas, and eggs, but, didnt say anything about wheat. Well, sorry to ramble...but I think, if a person has all these required tests, and still being told everything is "normal", something is way off base. All the docs do is tell us to take more pills, and never get to the ROOT of the problem. I am sooo frustrated, I wish there was a true life Dr. House that could just put all the pieces together, and finally tell me what is wrong. Anyway, I think I got off topic a bit, but I do think it is a HIGH possibility you could be gluten sensitive. Like with me, maybe Im not a positive CELIAC, but I do know when I eat the wheat containing foods, Im dying in the bathroom So, Im in pursuit of being my own health advocate, and I pray, that ALL of us can finally get some resolve....

[veggienft]

This is how I understand gluten sensitivity. Zonulin, in the presence of gluten, dumps your intestine's contents into the bloodstream. Then the dumped zonulin and dumped gut antigens attack tissue from the bloodstream. There are four manifestations of that attack, and only one of them represents an immune response to gluten. That's called gluten intolerance, and doctors test for it. The other three are part of the catchall "gluten sensitivity", and there are no tests for them.

Any of these gluten-sensitive attacks can hit your liver. Your liver is responsible for making bile acid and for processing cholinesterase. Bile acid digests food and dissolves digested fat. Cholinesterase is responsible for reabsorbing bile acid. When bile acid doesn't get reabsorbed, it burns your intestines, and keeps fat suspended in your stool.

Zonulin can be released as a reaction to wheat by people with active intestinal celiac disease. It can just as easily be released as a reaction to wheat by people who do not have active intestinal celiac disease.

You said that a gluten-free diet cures your symptoms. One could assume that one of these gluten sensitive reactions is causing your symptoms. You've given social reasons (peer pressure) why going gluten free is painful. You're on a forum full of people who experience that pain constantly .......but we're on the diet anyway.

I'm very sorry that you can't have a diagnosis. Stop eating gluten and get well anyway.

..

[nora-n]

Sounds like they did not look for celiac since flattened villi = celiac.

The first poster here:

The doctor was wrong telling you to go off gluten first and then back on gluten for four weeks. Should have done the tests first.

The reason is that the four weeks back on gluten are not enough time to show the damage needed for a positive diagnosis. It often takes three months or more back on gluten.

In my opinion, just stay off gluten since a positive dietary response is diagnostic. My daoughter was officially diagnosed that way, and she was off gluten on my suggestion and got dramatically better.

nora

[GF-Canadian]

Thanks for the suggestion.

I