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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hi everybody!

A quick recap:

Negative Ttg IGA: Result <1 (Range: Positive >4)

Normal Immunoglobulin A 179 (Range: 81-463)

Had an endoscopy done on 11/30 and doc wanted to see me back for results.

Here's exactly what's written on the report:

SECOND PART OF DUODENUM, BIOPSY:

FOCAL MILD SURFACE INTRAEPITHELIAL LYMPHOCYTOSIS

COMMENT: No evidence of celiac sprue is present. The biopsy shows small intestinal mucosa which has a normal villous architecture. Focally, however, there is a minimal increase in the number of intraepithelial lymphocytes. No Giardia organisms are identified on the H&E stained section. Normal villous architecture with increased numbers of intraepithelial lymphocytes can be seen in a wide variety of clinical settings. The differential diagnosis includes partially treated-latent sprue, first degree relatives of patients with gluten sensitivity, dermatitis herpetiformis, bacterial overgrowth, Helicobacter P gastritis, hypersensitivity to non-gluten food products, lymphocytic-collagenous colitis, Crohn's disease. NSAID use as well as a variety of autoimmune disorders.

STOMACH BIOPSY: Normal no evidency of H Pylori. No evidence of dysplasia or malignancy. (I summarized this part but everything is normal except for "nervous gastritis".)

6 samples from stomach and 6 from duodenum were taken.

Doctor said the duodenal results can be seen in Celiac but since my bloodwork was negative he is ruling it out. He wants to treat me with a harsh antibiotic for Giarda to see if I feel better. (Biopsy result didn't catch any Giarda). He also said this doesn't look like Chron's.

We are waiting till January to start antibiotic since it is nasty and so I can enjoy the Holidays.

I asked him why is he ruling out Celiac if bloods can be false negative and he said not when all 4 tests were negative. I was like "Ummm, you only did 2!!!".

Had more blood drawn today for the missing tests which are the Endomesyal one and the Gliadin one. Sorry, had to turn in the order and don't remember the exact names.

Forgot to mention other than Gastro symptoms (bloating, rumbling stomach, pain, fluffy stools) I have eroding teeth and joint pain. I also think my energy levels have decreased.

Thoughts please???

I am desperate! :D

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Well..... welcome to the world of "no- diagnosis land." <_< There are many of us who went on to become gluten - free anyway, because we got sicker and sicker on a normal diet, and we feel much better on a gluten free diet. Some of us with nerve damage even had some dramatic reversals of other chronic problems, such as I slowly, over the course of several years, regained the ability to see at night and the ability to see colors out of my one eye, which was losing it.

After all the testing is done, you can do a gluten challenge and remove it from your diet and see what happens, since you have symptoms and some minor damage which is indeed showing up on that biopsy report. If you start to feel dramatically better, then you may be "non celiac gluten intolerant," or you may have caught the celiac in the earliest stages, before your body suffered enough damage for it to show up on tests.

I won't tell you what to do about the antibiotic, just telling you what you can do if and when the antibiotic does not work, it seems that there are lots of tests for giardia, did this guy run any of them ? I always keep in mind years ago, we had a horse that was suddenly, extremely sick and the veterinarian guessed correctly that the horse needed IV antibiotics before the lab tests confirmed it, and asked for permission to treat based on several other horses coming in that week with the same symptoms, caused by a tick - carried parasite. And that started with him being off of his appetite (never happens with a horse, for no reason !) and within 12 hours it was a crisis colic and extremely high fever (106º F) with sweat literally running off of him in sheets during a cool evening. Once in a while, antibiotics are very useful.

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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. :(

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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!

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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.

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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.

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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????

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Why is testing so elusive????

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 :)

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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!!!

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If you are changing your diet, a food journal can be very helpful. It can help track down hidden gluten and find other food intolerances.

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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.

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????

The ONLY tests that was positive for me was the DGP. It was very high. I cannot eat gluten or I get very ill, with symptoms exactly like yours. I wonder why your doc is not using the DGP, as it has replaced the anti-gliadin abs because it it much more specific for Celiac. Also, getting tested for the genes could help add some pieces of the puzzle.

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