Hello,

I am quite surprised that your doc has suggested removing gluten prior to you getting tested. The usual format is to have blood take whilst still eating gluten otherwise you could get a false negative. If you cut out gluten now, your symptoms should vastly improve and you will be reticent to do the 6 week gluten challenge required when you do get tested.

That said, if this is how you are dealing with the situation I wish you all the best of luck, I gave up gluten 3 years ago and like the above poster, brain fog, eyesight, joint pain, bloating and wind, constant diarrhoea and skin issues cleared up within about a month.

If it is gluten that is making you ill, you will feel so much better that you won't risk making a mistake, there are forums on here and a great many people happy to help and advise with what to eat and how to cook gf. Once you get used to it, it really isn't that bad, I have since cut out all dairy as well which just adds another challenge lol.

Good luck

Quote from About.com

Question: Why do I need to be eating gluten for celiac disease testing to be accurate?
Answer:

If you're being tested for celiac disease, you've probably seen warnings to keep eating a "normal," gluten-containing diet until all of your testing is complete. But why is this necessary?

The reason is actually pretty simple: celiac disease tests look for the damage caused to your body when you eat gluten-containing foods like wheat bread, pasta and pizza. If you stop eating these foods, the damage can start to heal pretty quickly—and you may test negative even when you actually have the condition.

To get a celiac disease diagnosis, your doctor usually first orders blood tests that look for antibodies that your body produces when you eat gluten. These antibodies reflect the damage done to your small intestine by your own immune system, in response to gluten ingestion. If there's no gluten in your diet, your immune system won't produce these antibodies, so none will show up in your blood.

If you test positive on these blood tests, the next step is an endoscopy. (If you test negative but have overwhelming celiac disease symptoms, or other reasons to think you have celiac disease, such as a family history of the condition—despite those negative blood test results—you might also proceed to the endoscopy.)

An endoscopy is a procedure in which a gastroenterologist winds an instrument down your throat and actually collects tissue samples from your small intestine. Those samples are then examined for signs of villous atrophy, or intestinal damage caused by your immune system's response to gluten ingestion. Again, if you're not ingesting gluten, there may not be as much damage to find, and samples might test negative for celiac disease—even though you actually have the condition.
Once I go gluten-free, how long do I have before I risk inaccurate test results?

That's not clear, since the testing isn't 100% accurate even in those who are eating gluten.

Some people — around 10 to 15% — have so-called "false-negative" blood test results (negative blood test results but a positive biopsy) even when they're eating a gluten-filled diet, according to Dr. Alessio Fasano, head of the University of Maryland's Center for Celiac Research. Since most physicians won't recommend an endoscopy if blood tests are negative, most people with negative blood test results won't get further testing for celiac disease, even though a few of them likely have the condition.

So if you stop eating gluten before your blood tests and then test negative, you won't know if it's because you don't have celiac disease, or if it's because you stopped eating gluten prior to your testing.

I've seen some reports from people who had positive blood test and endoscopy results (meaning they were officially diagnosed with celiac disease) even though they'd dropped gluten from their diets several weeks prior to testing. But we don't know how long those positive test results actually linger once you go gluten-free — those people may not reflect the norm.

One study looked at the blood test EMA-IgA, considered the most specific to celiac disease, and found that 58% of diagnosed celiacs (people who already had confirmed celiac diagnoses) actually tested negative on the EMA-IgA after three months of eating gluten-free. Three-quarters were negative on the EMA-IgA blood test after six months, and 87% were negative after 12 months.

It's therefore clear that you're taking a chance on getting false-negative celiac disease test results if you're not eating gluten at the time of your testing.

I was really sick when I cut out gluten so I had lots of positive changes. My joint pain/stiffness started to ease, (I couldn't raise my arm above my head at my worst) the brain fog and dizziness went away, diarrhea didn't stop (other issues going on) but I was finally able to control it through meds, my awful mood swings stopped.

Like Canadjineh above me said, the treatment is the same with or without a celiac diagnosis.

I don't actually care if I am officially diagnosed as having celiac disease, because treatment would be the same - AVOIDANCE. I am feeling too much improvement to jeopardize the gains I have made by introducing gluten again just to get a 'label.'

I would suggest you don't bother to re-introduce gluten and get tested unless it is something you need for insurance coverage or special food allowances, etc. Why cause more damage just for a name? :noway:

This is how I am feeling currently. I had terrible acne that has cleared up, and I feel so much lighter, I had a turkey sandwich while I was out last night because I thought, "how much could it hurt?" UGH I figured out real fast. Stomach pains, constipation this morning, and I am so exhausted despite my full nights rest, a starbucks coffee, and that natural TGIF high you get. I won't be doing it again... and I'll be reading those posts about gluten recovery. Im thinking I dont need a diagnosis if I know how I feel. Perhaps just monitor other health issues to see if they improve with the absence of gluten in my life

Interesting & helpful book for anyone newly diagnosed or at least learning they need to live Gluten-Free:
in conjunction with the University of Maryland's Center for Celiac Research. www.celiaccenter.org
"The First Year - Celiac Disease and Living Gluten-Free
An Essential Guide for the Newly Diagnosed"
Written by Jules E. Dowler Shepard (a patient-expert) along with foreword by Dr Alessio Fasano MD (founder of above Center)

If you are desperate for baking - ie pizza, homemade breads, cakes whatever - she has a very easy and good recipe for all purpose GF flour and how to use it. Not my style - all the baked goods, but she is from the southern US so life revolves around flour there, either dredging food and deep frying it or making baked goodies. Sorry if I insulted anyone with that statement - but I have travelled around the South and it's hard to get healthy food.

Some good ideas for entertaining, dining out, and dating as well as checklists for Celiac-safe home kitchens. Things you may never have thought of as well, such as checking ingredients in lipsticks or toothpaste, etc.

on a side note - got glutened by mistake yesterday :sad: :sick: :sad: I was too tired and hungry to oversee the cleaning of the grill plate at my fave Sukiyaki style beef & veg place (with no sauce of course) and they had a new person... Sure there was no sauce, but I realized an hour later that it must have been prepared on a grill that still had some residue from the previous meal's sauce. So bloated and ill all day yesterday and so far today, and very sore knee & elbow joints and the usual being tied to the bathroom. On the other hand - I lost 3 lbs since yesterday. :noway: not a good way to do it though.
REMINDER NOTE TO SELF: Do not take your 'regular' restaurant for granted, always check every meal...

Liana