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Positive Blood / Neg Biopsy?

Tigano

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Tigano Newbie
Tigano
Posted

So hear me out here....

Have had a positive blood test a few times...I believe its the IGg that was positive cause my PC says its the less sensitive anti-body of the two. Went for an endoscopic biopsy which came back negative...so...based on convential wisdom, no positive biopsy, no celiac disease and no change to my diet.

Not long after this I came down with a WICKED painful intestinal infection diagnosed as mesenteric penniculitis (sp? / say that three times fast!!)....which is an inflammation of the 'fat" around the intestine. Lasted a few weeks and lost a lot of weight...like 15+ lbs. One of the suspected causes of this type of infection is an auto-immune response...so celiac is a possibility...but drs couldnt say for sure what caused it (idiopathic).

After that was done I started having some very persistant new symptoms including -

- Intense light-headedness / dizziness

- lots of gas

- floating stool

- occasional night sweats

Based on what I've read....all very much indicative of celiac problems.

Had another biopsy recently which still came back negative...BUT...recently found out that there is a family history of celiac (aunt, cousins, etc.).

So my question is this....

Can you have a negative biopsy and STILL have celiac disease???

Appreciate your input.

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jhun Rookie
jhun
Posted
So hear me out here....

Have had a positive blood test a few times...I believe its the IGg that was positive cause my PC says its the less sensitive anti-body of the two. Went for an endoscopic biopsy which came back negative...so...based on convential wisdom, no positive biopsy, no celiac disease and no change to my diet.

Not long after this I came down with a WICKED painful intestinal infection diagnosed as mesenteric penniculitis (sp? / say that three times fast!!)....which is an inflammation of the 'fat" around the intestine. Lasted a few weeks and lost a lot of weight...like 15+ lbs. One of the suspected causes of this type of infection is an auto-immune response...so celiac is a possibility...but drs couldnt say for sure what caused it (idiopathic).

After that was done I started having some very persistant new symptoms including -

- Intense light-headedness / dizziness

- lots of gas

- floating stool

- occasional night sweats

Based on what I've read....all very much indicative of celiac problems.

Had another biopsy recently which still came back negative...BUT...recently found out that there is a family history of celiac (aunt, cousins, etc.).

So my question is this....

Can you have a negative biopsy and STILL have celiac disease???

Appreciate your input.

Tigano, I am one of the many posters here whom I know also had a positive blood and negative biopsy. I don't want to discourage you but based on your post everything seems to point to celiac. In my case it's harder to accept since I'm a Filipino with no one in the family having this disease. Celiac is unknown to my country and if you have celiac you will only be diagnosed with IBS like what happened to me. I just got proper diagnosis outside Philippines.

I was diagnosed by a GI doctor through blood and he said there is no need for a biopsy since I'm positive with lga and I have a raised ttg. Not satisfied I went to another doctor who did the biopsy that came out negative. He told I have no celiac and said "go back to your normal life and eat". I hesitated at first but later on I did some gluten challenges, it didn't make me sick in the beginning but later on all my symptoms of bloating and gas came back. So that's it, gluten free!!!

Lisa Mentor
Lisa
Posted

Biopsy's can be hit and miss. A biopsy can rule Celiac in, but not necessarily rule it out. As in blood work. If you have a possitive result for Celiac, yes, you are diagnosed with Celiac.

The most genuine form of diagnosis is a positive dietary response.

Belinda Meeker Apprentice
Belinda Meeker
Posted

Tiagno,

U r not alone same thing with my son (which doc said was okay due to later insurance problems)

my son's blood test was posative for celiac disease (Sprue) so they did the bio. and it was negt. at the time, but he has responded beautifully to the diet so my suggestion is to go on the gluten-free diet and stay there and ur body knows better then any docter on earth !

Me and hubby both had negt. blood and bio's. had already started diet before testings didn't know u had to be eating the nasty gluten :( (but we have DH and if u have DH then u have celiac disease)

we have both responded well to the diet so we r continuing, so u should do the same.

Good Luck

Belinda

Tigano Newbie
Tigano
Posted
  • Author

Thank you to all for insight and support...

Plot thickens...

Had a negative genetic marker come back which, according to GP, makes it very unlikely that i have celiac....BUT...been off gluten for like 5 days + more electrolytes and have had 2 days almost symptom free (especially no light-headedness) / felt like myself for first time in months.

Based on this, Im going to keep off the gluten and hope for the best...

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Think of it this way: villi damage is often patchy, not visible to the naked eye, you have something like 22 feet of intestine, and they take 3-5 tiny samples, probably less than an inch each.

Bottom line: the chances of them hitting an affected patch is at most 5 out of 264 (22 x 12).

Why this was ever considered the gold standard of diagnosis is beyond me. :blink:

kevieb Newbie
kevieb
Posted

i've wondered why it is considered the "gold standard" also----since milk problems can also cause villi blunting.

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happygirl Collaborator
happygirl
Posted

You could also NOT have "true" Celiac, but could have a non-Celiac gluten sensitivity. On a day to day basis, there isn't much difference, because treatment is the same: a gluten free diet.

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