Sign And Symptoms But Test Are Negative

[Della88]

Hi,

I just joined this site after coming across it doing some reading. My story is a little long but please bare with me. Also my spelling is horrible.

So I am 27 years old, female, Irish and native decent. Growing up I was always constipated, at least I always remember having difficulties going to the bathroom and somehow always being backed up and I stayed like that until just last year. For the most part I figured that was normal for me. Not having a bowel movement for 3-5 days just seemed normal.

Last May everything changed. I travelled down to NYC, ate street meat which I have always had a pretty tough stomach, i think, and returned within 24 hours with severe food poisoning. I ended up completely dehydrated, vomiting, passed out, once IV was in, I vomited and through up for 8 hours. I was told that it could take some time for my stomach to fix itself back to normal.

So I took it easy, well at first, I noticed I was getting the runs, loose stool and cramping often with bowel movements. Not always the same but it started quite often, now this is only since last May. Before that, I was always constipated. So now this did not seem normal. But it would come and go. I did not for a second think twice about it being contributed to anything I was eating. Not even a though.

Oct 12th, I had Jaw surgery and went under a general anaesthetic as well. I was mainly on liquids for quite sometime and slowly ate soft foods until beginning of Nov.

I mention both the Anaesthetic and the food poisoning because I heard you can have a already hidden gluten sensitivity arise after having one of the mentioned. But thats just what I heard.

Dec 1st is when my thought process started to change. I don't know if I came down with a severe viral infection or something but I ended up on the toilet 5-15Xs a day until the 18th of Dec. thats 18 days straight, Not aloud to go to work, could not keep any foods down, severe cramping, abdominal pain, blood, mucus, nausea, dehydration. I felt awful.

I did a colonoscopy, showed nothing but that fact that yes in fact I was having runs a little inflammation, nothing serious. Blood test for Celiac, electrolytes, thyroid, etc came back ALL NEGATIVE...

Just before the runs stopped on the 15th of Dec, I woke up and thought, Ok I am not feeling horrible I will just have a simple piece of toast. What can a simple piece of toast do RIGHt....

WRONG... I was on the toilet within 30 min, cramped runs, sick sick sick. And just feeling horrible for 2 days. So thats when I decided to look up whats in bread.

ANd yes Celiac came up. So I said, what the heck (I didn't have celiac results back by this time). I CUT out all Gluten out of my diet.

And by the 18th Dec, runs had stopped, cramps gone, etc. now I did end up breaking out into hives for 5 more days, and also ended up in emerg on the morning of the 26th with major crippling and cramping in both my arms that is still unexplained to this day but I could not even open a door, hands and arms would not work... Likely not related...

All this said, I felt better and stools hardened again BUT the Celiac test result came back negative so I didn't understand. My doctor said, No gluten shouldn't be a problem maybe it was just fluke on the dates and timing.

So i decided to leave Gluten out for a while and tonight being mid Jan I went out for dinner. And I decided to have a small piece of bread with my dinner.

What could a small piece of bread do especially if my tests were negative RIGHT.

WRONG.

Within 30-45 min I could feel sharp pains in my stomach, I was not feeling good, as soon as I got home I sat on the toilet for 45 min.

It started as a hardened stool and soon everything I had consumed flushed out of my system.

I did not have the runs however, but it was definitely soft and expelled everything.

Now I am lying in bed writing this more confused then ever.

Am I just sensitive to breads, gluten, certain glutens.

Why did my test results come back negative

Was it just a fluke again tonight

Is it true Anaesthetic and food poisoning incidents can bring out an already hidden gluten intolerance and make it active changing your digestive system

Am I missing something

What is the difference between gluten sensitive, gluten intolerant and Celiac.

Is it in my head

Am I crazy LOL

Well any guidance or advice would be great. And sorry but my question mark key is not working.

Sincerely Della88

[mushroom]

Hi Della, and welcome to the forum.

No, you are not crazy!! They would all like us to believe we are, but it is just the inadequacy of their testing.

It is only now that doctors are coming to realize that there is such a thing as non-celiac gluten intolerance, that celiac disease is just, in fact, one form of gluten intolerance. Although the doctors would have you believe that celiac is the most serious form of gluten intolerance, because that is the one that they can test for and get positive results, there are just as many people, probably more, who are intolerant to gluten and test negative for celiac disease. The tests for celiac disease test for specific antibodies in the blood and specific damage in the small intestine. It is possible to test negative on both blood and small intestine biopsy, and still have terrible problems with gluten.

With celiac disease, you have inherited one of several specific genes from one or both parents. (There are also other genes that have been identified with gluten sensitivity.) Now not everybody who has a celiac gene develops the disease - there seems to be a triggering event. It may be physical or emotional stress, trauma, illness, child birth - the triggers are many and various. With you it may well have been your bout of food poisoning. But it did not trigger celiac disease, it triggered gluten intolerance. There are theories being proposed that gluten intolerance is a different form of celiac disease, or that celiac disease is just one form of gluten intolerance. Quite a lot of research is being undertaken in this area, most of which your average medical practitioner is unaware of.

Now I don't know if this has answered any of your questions, but fire away with additional questions; we are at your service.