lmc22

  On 11/6/2012 at 5:45 AM, kareng said:

Did you get a copy of the pathology report? This is from the special doctor (Pathologist) that looks at the small intestine samples.

In the US, they look for the 2 most common genes:

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Of course, even if these are all negative, you could have non-celiac gluten intolerance. The only way to find that out is to eliminate gluten for a few months and see if you feel better.

I didn't receive the pathology report. Could those results be interpreted here?

  On 11/6/2012 at 3:28 AM, cassP said:

did u have ALL the antibodies tested???? this is such a hard disease to diagnose- you really need ALL antibodies tested- not just the ttg for example. PLUS if you are LOW in IGA serum, then your iga antibodies will be innacurately low.

please consider going GLUTEN FREE even if you don't get a 100% dx.... i felt like i needed the dx as well, but now i know that the damage gluten can do to your body & mind is EXTENSIVE and not just localized to Celiac. i had no idea till after my Celiac self diagnosis-> just HOW MUCH Gluten had EXACERBATed my Graves

it could do all kinds of things like lead to Crohns, colitis, diverticulitis, cancer, thyroid disease, ataxia, etc etc etc

educate yourself- and dont rely soley on doctors- my Gi actually told me to get online- he said that they just dont know enough- and that i would find others online who would know more!

both my Gi AND my Integrative Doctor believe that Celiac is more of a spectrum, and that quite possibly (far enough into the future)- 30% of the population (with the dq genes) might all develop Celiac.

also- you dont have to have the classic celiac genes (dq2 and dq8) to have it.. others on here have been diagnosed with DQs with different #s like DQ9, DQ1, etc

I don't believe all the antibodies were tested.. I'll post the blood results here when I get them... as far as genetics goes he only tested me for 2 of the genes! I didn't even know there were more than 2! That makes me mad.. he led me to believe that there were only two possible for Celiac! Unbelievable!! I have my endoscopy results with me.. What part of that should I post on here? It's basically pictures of each section that passed through :/ with a small description at the bottom

  On 11/6/2012 at 12:06 AM, bartfull said:

You could have non-celiac gluten intolerance. It is a very real condition with symptoms that are the same, just no intestinal damage. But the solution is the same - a gluten-free diet.

Thing is several drs thought it was Celiac.. because I have alot of symptoms that are not caused by simple gluten intolerance.

  On 11/5/2012 at 11:49 PM, love2travel said:

Five is a small number, unfortunately. It is recommended that one has at least 8-12 biopsies taken otherwise it can be so very hit and miss.

So in that case what do I do?

and I had been eating gluten for about 7 months before being tested.. before that I was gluten free

I don't know if this helps but the blood panel I had done was the PROMETHEUS^® Celiac PLUS

I requested the blood results be sent to me today.. so I should have them soon. They biopsy was taken from my small intestine in 5 different spots I think

I get the same type of rash if I eat gluten. Looks kinda like blisters/acne... if I go gluten free then it slowly starts to go away

So today my doctor informed me I don't have celiac because my blood panel was negative and that based on the blood panel done, he says I don't have the celiac gene. He also said the blood tests are 90% accurate. Is this true? I was under the impression that they are not very accurate. Also he told me that my biopsy was negative. I'm very devastated at this point... I literally have all the symptoms and then some! Yet my doctor says I do not have Celiac.. and none of the other 15+ specialists seem to know what's wrong if it's not Celiac disease

I'm anemic even on supplements and I have low vitamin D levels even though I get plenty of sun :/

  On 11/1/2012 at 5:41 AM, GottaSki said:

Yes, it is possible to have Celiac Disease with negative blood work and endoscopic biopsy results. It does become more difficult to obtain an "official" diagnosis.

Make sure you request written or electronic copies of ALL of your medical tests.

It is unfortunate that not all Gasteroenterologists have proper training or experience with Celiac testing. Should you have questions about your testing, feel free to post them here...lots of members can help you interpret them.

Now, it is possible that you have Non-Celiac Gluten Intolerance - NCGI can cause very serious symptoms that are quite similar to Celiac Disease and the research into this side of Gluten Sensitivity is still very new - sadly even less understood by the medical community than Celiac Disease.

Oh...forgot to ask...had you removed gluten either partially or completely prior to any blood tests?

Regardless of the diagnosis - since your biopsies have been taken - it is time to remove ALL gluten for at least three months (six would be better) as elimination is the only test for NCGI and often the best test for Celiac Disease.

Hang in there

I have yet to go on a gluten free diet, so yes before I was tested I had gluten in my system for some time. Another question I have is this, does non celiac gluten problems have vitamin deficiency, anemia, and neurological symptoms tied to it? I have a hard time understanding what makes the two different other than the damage to the Villi.

I'm wondering if it's possible to have a negative blood test and a negative biopsy, and still have Celiac..?

I havent officially got my biopsy results back but he said everything else looked normal on the camera...

I have very bad luck with medical tests so I'm alittle paranoid, as I've heard Celiac testing can be somewhat unreliable.

So is a negative blood test and a negative biopsy possible in someone who has Celiac disease? If so, are there any other ways of proving Celiac? I have TONS of symptoms of Celiac disease so I'm about 99% sure I have it (also someone in my family who is believed to have died from undiagnosed Celiac)

Long story short, I'm scared so any answers to my questions would help ease my mind