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confused123

Member Since 12 Nov 2012
Offline Last Active Jan 18 2013 05:56 AM
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Posts I've Made

In Topic: Biopsy Results Help Please

29 December 2012 - 08:16 AM

I sure wish I could answer this....some say it means you simply have Non-Celiac Gluten Intolerance...some say you have Celiac Disease that has not yet caused enough damage to release enough antibodies to test positive from the digestive tract to the blood.

For me - I tested barely positive on all antibodies at age 43 with total villi atrophy -- celic symptoms had been present my entire life - I just never knew to look for it and doctors dismissed me because I "looked" healthy and all the blood tests they chose to run where normal -- except extremely low iron from age 18. My kids all tested negative at my dx (except for the eldest's DGP) yet all have had much improved health gluten free. Are they Celiac or NCGI -- really doesn't matter the label - they cannot eat gluten and some other foods for a some of them.

Much research is needed in the areas of all digestive and autoimmune disorders -- until research catches up -- sadly we will have many unanswered questions.

For now...since you have had all the proper testing -- given your symptoms and cellular changes in the small intestine -- I would not wait until you test positive or have proof in subsequent biopsy to remove gluten and start healing. There is another way to look at this -- you can remove gluten -- if you improve have another endo at a year and see if the endo provides samples that have no lymphocytes -- also retest your full antibody panel and nutrients at the same time -- if all improved that is pretty clear that you caught Celiac Disease before it ruined your life :)


Thank you! You are the best!!!

In Topic: Biopsy Results Help Please

28 December 2012 - 01:56 PM

My humble opinion - hold off on antibiotics - remove gluten for at least three months (six is better).

Increased lymphocytes - while not specific to Celiac Disease is in fact Stage 2 on the Marsh Scale for Celiac diagnosis!

The tests are not perfect and even when several samples are taken it is HIGHLY possible to miss early damage to the villi.

Symptoms + lymphocytes = reason to remove all gluten.

I would not be at all surprised if your DGP or AGA (gliadin) tests come back positive.


Thanks Lisa! My tests were negative, TTG (iga), AGA (iga and igg), and EMA. Normal Immunoglobulin levels. The DGP was NEVER ordered. Hmmm, wonder if this could be the missing link?

I am just so frustrated because my stomach hurts every single day.

PS...

Did you have nutrient testing? All Bs, D, K, iron, ferritin, copper and zinc along with CMP (complete metabolic panel) usually give an indication of the malabsorption caused by celiac disease.


I only had my ferritin, B-12 and Folate checked. All normal. But my teeth are eroding badly (according to a recent dentist visit) so I know I have malabsorption issues. All this plus my son has similar symptoms!

Why is testing so elusive????

In Topic: Biopsy Results Help Please

28 December 2012 - 11:35 AM

Well, the other tests that were missing for celiac are negative. Antibiotic for Giardia is the next step. It wasn't caught on the biopsies, though. Anybody has had a similar situation? Thanks so much!

In Topic: Biopsy Results Help Please

18 December 2012 - 01:22 PM

Sigh, thank you for your reply. I will probably take the antibiotic and also try the diet and see if I feel better. So tired of my stomach hurting ALL the time. :(

In Topic: Scalloped Duodenum, Been gluten-free, Worried

16 December 2012 - 08:55 AM

Also, anyone have aches and pains in abdomen after endo procedure?? I'm getting some sharp twinges and aches! Ugh.
Thanks again lovely peeps :)


I did have some sort of pain after the endo procedure! It was especially painful when I bent over or laughed. It only lasted a couple of days, though. :D