Fed Up

[Chris E]

Hi all! As some of you are probably aware i have been having numerous weird symptoms for about 4 months now and i am now totally fed up. I started with constant tiredness and Diahrrea and lost approx 2.5 stones and have not felt good since. When the D cleared up i have passed bulky stools since with some periods of D. Symptoms which have continued to bother me include constant headaches, dizziness, brain foginess and tingling down the back of both of my legs. I have also noticed an increase in itching all over my body with the occasional red spot coming up for approx 1 day before going back down. I have suffered from acne for many years, but this has been worse since the very onset of my symptoms. Approx 2 years ago i developed a rash on both arms which ran from my shoulder down to my elbows and on the tops of both of my legs which was extremely itchy. My doctor gave me some tablets to take and said that it was a reaction to deodrant/ shower gel. Could all of this be linked?

I have seen a GI who performed a colonoscopy and endoscopy and found nothing and is therefore going down the road of IBS. Blood tests for celiac have also came back negative. My doctor has recently referred me to a neurologist to investigate the headaches and tingling in my legs. Has anyone exerienced these kind of symptoms before and is there still a possibility that i could be celiac een though i have had negative blood work? Please help becasue i can't take much more and i am worried stupid.

Chris

[celiacgirls]

Yes, you could still be gluten intolerant and have the blood work be negative. My daughter suffered for years with symptoms not as bad as yours and her blood tests were always negative. She is now gluten free after Enterolab testing was positive and she is better. The best test would be to try the diet and see how you feel.

[Guhlia]

Totally ditto on what Karen said. You absolutely could have Celiac or gluten intolerance, even with negative blood tests and endo biopsies. The best test would be to go gluten free for a few months and see if your symptoms are alleviated. If you need proof before going gluten free, I would recommend using Open Original Shared Link. Many people on the board have tested negative with conventional testing, and then tested positive through Enterolab, went on the gluten free diet, and feel much better. Good luck! Keep us posted.

[plantime]

The best test is to try the diet for 6 weeks, then evaluate how you feel. The diet is a scientific test, and the results of it are valid. Even if your doctor never accepts what you learn from the diet, you don't need his permission to eat in a way that makes you healthier.

[par18]

Hi all! As some of you are probably aware i have been having numerous weird symptoms for about 4 months now and i am now totally fed up. I started with constant tiredness and Diahrrea and lost approx 2.5 stones and have not felt good since. When the D cleared up i have passed bulky stools since with some periods of D. Symptoms which have continued to bother me include constant headaches, dizziness, brain foginess and tingling down the back of both of my legs. I have also noticed an increase in itching all over my body with the occasional red spot coming up for approx 1 day before going back down. I have suffered from acne for many years, but this has been worse since the very onset of my symptoms. Approx 2 years ago i developed a rash on both arms which ran from my shoulder down to my elbows and on the tops of both of my legs which was extremely itchy. My doctor gave me some tablets to take and said that it was a reaction to deodrant/ shower gel. Could all of this be linked?

I have seen a GI who performed a colonoscopy and endoscopy and found nothing and is therefore going down the road of IBS. Blood tests for celiac have also came back negative. My doctor has recently referred me to a neurologist to investigate the headaches and tingling in my legs. Has anyone exerienced these kind of symptoms before and is there still a possibility that i could be celiac een though i have had negative blood work? Please help becasue i can't take much more and i am worried stupid.

Chris

Do the diet and don't cheat. Give your body a chance to respond!

Tom

[kasia]

Hi Chris

Just wanted to say that I'm thinking of you too & can really sympathise! My symptoms that I've had for only about 2 months are similar to yours especially the weight loss & diarrhoea (are you English BTW as your weight loss is in stones - I lost a stone so far?)

I'm awaiting my biopsies, but I have a feeling they may come back negative too as my symptoms have only been around a short while.

I have given up gluten (although it seems to be everywhere!) & do feel a small bit better (although still shattered). It seems to have brought back my appetite which helps with the weight loss, & I really don't want to eat it again.

Anyway I really hope you feel better soon & good luck

Kate

[CarlaB]

My blood test and biopsies came back negative ... they weren't done entirely properly, so I'll never know for sure whether I actually had celiac damage, but my genes show gluten intolerance, not celiac. Modern testing tests for celiac that is very progressed, but logic tells us that there must be stages of the disease. You may just be catching it before there is damage to your intestines or antibodies that have made it to your blood. Enterolab tests stools instead because that is the first place antibodies show, so there tests are more sensitive.

The best way to see is to see if you feel better eating gluten-free. My symptoms are gone!! I am still healing from the damage, but my IBS symptoms are gone as long as I stay away from gluten.

[Chris E]

Hi Chris

Just wanted to say that I'm thinking of you too & can really sympathise! My symptoms that I've had for only about 2 months are similar to yours especially the weight loss & diarrhoea (are you English BTW as your weight loss is in stones - I lost a stone so far?)

I'm awaiting my biopsies, but I have a feeling they may come back negative too as my symptoms have only been around a short while.

I have given up gluten (although it seems to be everywhere!) & do feel a small bit better (although still shattered). It seems to have brought back my appetite which helps with the weight loss, & I really don't want to eat it again.

Anyway I really hope you feel better soon & good luck

Kate

Yeah, i am english. I live in Newcastle!!!!!