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Lindsey

At Last An Answer!

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I'm 39 and I've suffered stomach pains, wind, bloating, constipation, itchy skin rash, anxiety, foggy head, nervousness and depression for years now (getting progressively worse) I'd given up with doctors until last week when I tried once more.....he is sending me for a coeliac screen which I'd never heard of so I looked it up.

What a revelation! The symetrical skin rash really clinched it! I at last have a answer to this problem that has been litterally ruining my life!

Today is Monday and my blood test isn't until Wednesday morning but I've already cut out the gluten. I've read that I shouldn't do this as my blood tests won't show it if I have it? It's hard to make myself eat gluten now as I've not had any symptoms for 2 days now! I could do with the help from a dietician though and I don't suppose I'll get that if I don't test positive? I'm in the UK by the way...

How important do you think it is to get a proper diagnosis - I'm sure you can tell by my post that it's fairly obvious that I have coeliac.

I suppose I could manage a few bits of bread between now and Wednesday, but what about after that? Will I have to go for other tests and still be eating gluten? I don't want to eat it for a day longer than I have to if I can avoid it.

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A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.

I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.

Thankyou both very much for your repiles - I totally agree with that and I will stick with the gluten free. I'll still have the test and take it from there. Thankyou.

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Lindsey:

Good luck with your testing on Wednesday. If we can help you in any way, just ask,


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.

So should I expect to get some symptoms (painful bloating and constipation are my worst ones) for some time yet? I shouldn't be surprised to get these symptoms even being gluten free, for a certain time? I was just wondering as I might think I've not got a gluten allergy if the symptoms persist while gluten free.

Thankyou.

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Every now and then after going gluten-free you might get unexplainable gas, bloating which could either be coming from mysterious sources of gluten or "just because." The "just because" type can go on and off for the first year gluten-free.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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