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Biopsy Results
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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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