Sigh

[Billygean]

Well you can probably see from my other posts that I had mono followed by chronic fatigue and a lot of digestive issues. My coeliac test was negative but I went gluten free on the advice of a coeliac relative and got almost better. Since I still had a while before returning to college I decided to try a gluten challenge. I had four slices of bread in four days and was in bed for the best part of a month. I'm still pretty confused because I also had a cold at the time which can cause issues for people with chronic fatigue. I went off the gluten though and I am no longer ravenous and light headed, and the chronic fatigue's almost gone again.

Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

BG

[nikki-uk]

Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

You are right in thinking your blood test will more than likely come back neg after 6 weeks gluten-free - a small bowel biopsy would also most likely be negative as well I'm afraid

So, see the doc anyway (possible diagnosis on dietary evidence?)

OR do the gluten challenge (at least 6 weeks ON gluten)....only you know if you are up to that

OR take a gene test (might give you a better idea if you KNOW you carry the 'known' genes for celiac disease)

OR you could just carry on as you are

There are many people on this site without a 'formal' diagnosis, but KNOW gluten is no good for them.

Good Luck

[ang1e0251]

I'm one of those with no official dx. I don't feel the need and will not go back on Gluten , uh-uh. My children are grown and don't need my test results if they choose to be tested. Also I'm a little concerned how my insurance carriers will treat me with a dx. I've heard rumores. You know how you feel gluten-free, if you choose not to do a challenge, it's a personal choice of your own.

[zero]

The gene test sounds like a good suggestion. Have you been tested for a wheat allergy (are there skin tests for that)? It is nice having a label of celiac to justify the dietary restriction but your reaction is so severe that you might just be going through a lot of pain, hassle and expense to finally be told to avoid gluten which you already know.

I'll also suggest that if your feeling adventurous (and because I am an engineer and think of such weird things), you could do another experiment. You have a reaction after eating bread but you introduce a bias because you know you are eating gluten. With the help of a conspirator, you could set up a series of meals which usually don't but occasionally do contain hidden gluten. Perhaps a little flour mixed into spaghetti sauce or something and record what your reactions are. At the end of the experiment you can compare how your reactions correlate to the gluten. I suggest this because one of the most satisfying experiences I had after diagnosis and being gluten free was having an unexpected reaction which I tracked down to some soy milk containing wheat. Even with the celiac diagnosis, it confirmed to me that gluten really was the problem which was not apparent prior to the diagnosis. Good luck.

rob

[Amyleigh0007]

There is a skin test for wheat allergy. I had it done last summer. My allergist diagnosed me with gluten intolerance based on positive resposne to diet (among other factors) so maybe visiting an allergist would be helpful. She seemed to know much more about Celiac and gluten intolerance then my primary doctor.

[buffettbride]

My husband is one of those in the "no diagnosis" category as well. We discovered his gluten intolerance after our daughter was diagnosed with Celiac and we decided to keep our house gluten free. Suddenly his tummy "wrongness" went away and so did that peculiar rash on his fingers. He decided that pursuing a diagnosis wasn't as important since he knew gluten (and sometimes dairy) made him feel awful, even when his blood screen came back negative.