Pos Blood / Neg Biopsy

[Tigano]

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.

[psawyer]

Yes, the biopsy can be negative while you do have celiac disease.

The biopsy tests a few samples from the lining of the duodenum. The damage may not cover the entire small intestine. It may not have progressed far enough to be detected by the biopsy. The samples may miss damge that is there in other places.

A positive biopsy is positive, period. A "negative" one is better described as "inconclusive": We didn't find any conclusive proof of damage to the villi, in the spots we sampled, this time.

[Guest j_mommy]

If it were me I would still go gluten-free!!! Like teh previous poster said they can miss the damaged areas! See what teh diet does for you!!!!

Good Luck!

[par18]

If it were me I would still go gluten-free!!! Like teh previous poster said they can miss the damaged areas! See what teh diet does for you!!!!

Good Luck!

I have to agree. You have already done testing with conflicting results. You still have Celiac related symptoms and have a family history of the condition. I think it is time to see what happens with a diet trial.

Tom

[mamabear]

Yes, the biopsy can be negative while you do have celiac disease.

The biopsy tests a few samples from the lining of the duodenum. The damage may not cover the entire small intestine. It may not have progressed far enough to be detected by the biopsy. The samples may miss damge that is there in other places.

A positive biopsy is positive, period. A "negative" one is better described as "inconclusive": We didn't find any conclusive proof of damage to the villi, in the spots we sampled, this time.

I love your definition !! I agree with everyone that Tigano should bag the biopsy thing at this point and do the diet. There isn't any else to gain except maybe good health!

[lradtke]

Hello everyone,

I am new to this site and now sure if I am posting in the correct area, however here is my story, hope someone can help?

I have never had any health problems except the one surgery to remove my tonsils and adnoids when I was in the 5th grade. Over the course of the past 10 years (I am 39) I have had Vertigo, which came out of nowhere, severe bouts of "food poisening" or so the Dr.'s thought. And ongoing severe cramping, diahrea (sp?), loose stool and with this comes a seizure like reaction which I end up fainting. It only happens when I am going to the bathroom and after writing down everything I ate for a month there was never any one thing we could pinpoint this reaction coming from. One time I passed out and broke the front teeth out of my mouth (2 months before my wedding, nice) another time I was home alone with my 4 year old and passed out off the toilet face first onto the ceramic tile floor and looked like I had been in a bar fight. I also get lightheaded and dizzy if I sit too long getting up and walking around seems to help. I have no other pain, no joint pain, a little arthritus in my knees and the occassionaly achy bones feeling but it goes away and isn't occuring enough to cause me any issues.

I recently changed Dr.'s and my new Dr. found that I have tested positive for an auto - immune disease. Which one is the question. I had a positive ANA blood test which led him to this conclusion. Now I have been referred out to a Rhuematologist. We live in a small town and we only have one Rhuematologist and I can't get in to see him until the end of September. I have had a CAT SCAN, MRI, EEG, EKG, and loads of bloodwork. The positive ANA blood test was the only thing to turn up. My Dr. said I am in for a load of more tests because it is so difficult to diagnose auto immune diseases. A friend suggested I check into Celiac Disease or having an allergy to wheat. My symptoms sounded similar so as I have researched online it does seem to have similarities. I was hoping someone out there might have some of the same symptoms or be able to tell me how to get tested for Celiac Disease and do I have to wait for the Rhuematologist or is this something my family practioner can handle? Would love any input anyone could offer, thanks for listening.

Northern Michigander

[lradtke]

Just wanted to say sorry I added my post as a reply to your post. I apologize I am a new user, just signed up today and actually never done this online before. Anyway I think I figured out where I needed to post my questions. Thanks.

[NY547]

TIGANO, I agree with the others also, you could still have celiac with a negative Bx. You could check to see exactly how many samples were taken as the disease is very "patchy" and ask to have them checked with a special stain which checks for intraepithelial lymphocytes (IELs) Even if there is no bluntuing or villi damgae, an abundance of the lymphocytes is the first stage of detection.

Also, many people are gluten sensitive which means they can have all the same symptoms as celiac, but no actual damage to the intestines. The symptoms will usually respond to a gluten free diet.

If you have IgG antibodies to gliadin, then in my oppinion, chances are you ARE reacting to it! My daughter only tested positive to the IgG and she always feels better going gluten free, though she has not been strict with the diet.

IRADTKE: The next time you go for bloodwork, I would ask to have a b12 level done also, as a low level can cause many of the symptoms you describe. I am guessing they have already checked for anemia and iron levels? Your family practitioner should be able to order a celiac panel, which would include the antibodies to gliadin and TTg (Tissure Transglutaminase). If your dr is willing, a thyroid test would be helpful too. FreeT4 and TSH.

Good luck to both of you!