Got My Results....

[JenHarris]

I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free.

Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis.

He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened.

Anybody else had similar experiences to this???

[MsCurious]

  On 4/13/2011 at 3:02 PM, JenHarris said:

I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free.

Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis.

He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened.

Anybody else had similar experiences to this???

Hi Jen, Yeah, I'm sure there are a LOT of people who have had similar experiences. I suppose I could be considered one of them. I would ask you, what tests you had done, and what the results were, because there are so many false negatives. In my case, they did tTG first, and they told me the results were negative. My gene test came back the highest risk gene possible, and when they did my EMA test... they didn't really DO it. They drew the blood for it, but the lab never did the test, yet they told me it was negative. I did NOT find out the the truth until I went to the clinic and got copies of the actual lab reports. My tTG was NOT negative, it was borderline, and I found out the EMA was never completed.

The reason I am telling you all this is, that I have TONS of symptoms, and I very well could be NCGS/I (non-celiac gluten sensitive/intolerant) HOWEVER, I may very well have celiac disease. I had the biopsy done two days ago, and have to wait two weeks for results, but at least (if the lab knows what they are doing) I will have a definitive answer. Because of my symptoms, and response to gluten-free diet, I am at the very least NCGS/I, but at least I will know if I have celiac disease or not. I would encourage you to get copies of the lab tests and see them for yourself. If you don't understand something on the test, ask your doctor to explain it. If that doesn't work, there are people here on the forums that can give you some thoughts on the results.

Good luck to you...hope you feel better soon, and hope you get answers.

[IrishHeart]

My IgG blood test was NEG too, but my "functional med" doctor told me that being gluten free for 5 weeks would not be a factor.... Of course, I know better NOW!!

Before that, my idiot GI doctor did an endoscopy (when I was still eating gluten and very sick) but NEVER biopsied me. I was pretty upset about that!!

My PC doctor said all my horrible symptoms and all the autoimmune diseases in my family, my father's medical history etc. ...are enough for him to DX me. He said false negatives happen all too often.

Testing is often wrong or incorrectly done and people continue to suffer. Makes me nuts.

One question though??---he wants you to remain gluten free, yet he will do an endoscopy in a month? Why?

That will NOT give you a definitive answer. Not sure what his reasoning is.....

Just curious... what is a Hida Scan???

[Igg postive]

  On 4/13/2011 at 4:03 PM, IrishHeart said:

Just curious... what is a Hida Scan???

Hida test is for gallbladder function. They give you (I think) a nuclear dye that uptakes to your gallbladder. Then you sit very still under a scanner for about 20 minutes as they see how your gallbladder functions. The lower the function of the gallbladder the more likely it could be causing abdominal pain. Do you have pain under your right rib (also pain in the center)? Does the pain radiate to the back on the right side? My gallbladder was at a 10% functionality and very ulcerated once they took it out. I have notice a number of persons with celiac have gallbladder problems. I wonder it they are related.

[IrishHeart]

  On 4/13/2011 at 11:09 PM, Igg postive said:

I have notice a number of persons with celiac have gallbladder problems. I wonder it they are related.

They are indeed related. Gall bladder impairment is listed as one of over 300 symptoms/diseases associated with celiac.

Had mine out in 1985 after being ill with it for a year. My health has gone downhill ever since...

Almost all of my family is practically gall-bladder-less

[JenHarris]

Here are the results. He gave me a copy and went over each result with me.

tTG IgA: 0

Gliadin IgA: 2

Gliadin IgG: 10

IgA, Total: 305

Vitamin B12: 903.4

He also did a Lipid Panel- which was normal. Amylase and Lipase levels were also normal.

Oh, and yes, I have been having pain on right side just below ribs that radiates to the back on occasion, so I'm sure that's why he's testing my gallbladder.

[cassP]

  On 4/14/2011 at 2:04 AM, JenHarris said:

Here are the results. He gave me a copy and went over each result with me.

tTG IgA: 0

Gliadin IgA: 2

Gliadin IgG: 10

IgA, Total: 305

Vitamin B12: 903.4

He also did a Lipid Panel- which was normal. Amylase and Lipase levels were also normal.

Oh, and yes, I have been having pain on right side just below ribs that radiates to the back on occasion, so I'm sure that's why he's testing my gallbladder.

this is all so confusing isnt it? how some Celiacs with NO symptoms have numbers thru the roof- and when i had my tests few years ago- my antigliadin was negative, and my ttg was like a 7. yet i was in quite a bit of pain and was having malabsorption & fatty bms. i wonder if they will identify different additional markers in the future?? have u thought about a genetic test? and there's also the EMA test, tho if your ttg is not positive- getting it done might be as difficult as passing an act thru congress.

i hope u get answers- and even if u dont- if you feel better on the gluten-free diet- please consider it- as it can lead to a whole mess of additional diseases & inflammation (including gall bladder problems)