Hello, new member have questions :)

[SHO]

My name is Seth, I have just had a blood test come back positive for CD. I have to go see a specialist soon. Four years ago I had multiple tests done to try to figure out what was wrong including upper scope, lower scope , ultrasound and some other tests I cant remember. The doctor said I had IBS and need to eat more fiber. Since then I have been trying to modify my diet to try to find what was the problem .. I never thought to try this. For the last 4 years I have to take 2-4 Immodium a day with a swig of Pepto to function properly . Last year I had dizziness and blackouts and my brain seemed to be in slow motion. I had Cat scans and MRI with no problems found.

My question is, does the blood test mean I have it or could it be something else? It does sound like most of the things I experience including fatigue and major cramps, but is the blood test usually accurate?

My last question is I have been suffering with this for 6-7 years now and do you think that I have permanent damage caused by this or can it be reversed?

I am 32 years old , I very rarely talk about my problems because I dont like to burden anyone and frankly, I am not sure if most really care. I dont trust doctors since that mis diagnosis 4 years ago and it seems like you folks are very knowledge and may offer insight.

[aklap]

Hey Seth,

Welcome to the board!

Sorry to hear you've had to deal with this. If it makes you feel any better - you're not alone. The average length of time to get diagnosis is 9 years [it was 11].

If the blood tests came back positive - the chances are very good that CD is what's been troubling you. Most likely you had the tTG test done. This is highly specific and sensitive to CD. However certain autoimmune diseases skew the results [it shows a false positive]. You can read it bit more about that in Our Thread on Celiac Blood Tests & More Diagnostic Info.

Blood tests are not perfect. However in the long run you're much more likely to get a false negative than a positive.

Edit to add: For the gold standard diagnosis, you need to have biopsies taken of your small intestine. If the blood work is positive - they will more than likely want to do the EGD to get the biopsies. If the villi are damaged, you are then dx'ed with CD. Sometimes they want to see positive results on a GF diet since there are other things beside gluten that can damage the villi.

Here's a nice site you might want to checkout before you get to the specialist

In many cases, damage to the villi will return to normal once gluten has been removed. Healing can starting with weeks, and go on for up to 2 years. Damage to other systems of your body - that's hard to say. Untreated CD can lead to many cascading autoimmune diseases.

Glad you decided to stop by and chat about this. We know exactly where you're coming from - we've been there - done that.

Please, make yourself at home. Poke around, read and ask questions!

Good luck with your Gastro appt. Please make sure you let us know how that goes!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Fifi]

Welcome!

This is definitely the best place to be for information. We all care and have gone through the same experiences. In this forum we are free to talk about anything. This is the only place that I feel comfortable talking about diarrhea and gas. There is nothing we won't understand or have experience with. Stick with us and we will go through this together!