Ttg Positive, Biopsy Negative. Celiac?

[chrise]

Hi,

I'm new and SO confused and frustrated and sick of being sick. About a year ago I had a Celiac panel come back with a positive tTG and a negative IgA. Total IgA was in the low-normal range though. And I had been eating gluten "cautious" for several months prior to this particular blood test. The doctor that ran the panel said I did not have Celiac because everything on the panel would have to be positive if I were Celiac. I might also add that nearly 10 years ago I had positive test from Enterolab and did go gluten free for about a year with some improvement, but I didn't maintain the gluten-free diet because I had a doctor then discount the Enterolab results, run some blood tests and tell me I was not Celiac and that eating gluten-free was dangerous if I'm not Celiac. Now I've got a whole slew of physical issues going on and I don't know if they're related to Celiac because I can't figure out if I have Celiac and I can't seem to get any clear answers.

Recently I had a rheumatologist believe I had Crohn's based on an elevated ASCA serum marker. She sent me to the gastro who did a series of tests looking for Crohn's... he didn't find anything yet other than unspecified inflammation and some benign polyps. I asked him to take a biopsy just to check for villi damage and Celiac since they were doing an endoscopy anyway. He did and it came back negative so he too says I don't have Celiac. I have a copy of the pathologists report but all it says is "several" samples were presented and there is "no evidence of Celiac". It doesn't indicate exactly how many samples were presented.

I guess my questions are... does a positive tTG indicate Celiac? How common is it to have a false negative biopsy?

And does anyone here know how valid Enterolab actually is? The gastroenterologist that did my biopsy recently really did not give them any credence at all.

Thanks for any help y'all can provide in clearing up my confusion around these lab tests.

Best,

Chris

[shadowicewolf]

I had a positive IGA TTG, both genes for it, negative biopsy, and a positive reaction to the diet.

As far as i'm concerned i do (along with two other doctors).

Biopsys are slowly falling from the "golden" standard. Try the diet now and see.

[mushroom]

Oh dear, Chris, it is no wonder you are confused. Anyone would be in your situation. I will try to give you answers as best I can.

I'm not sure what you mean by a negative IgA. Would that be the AGA IgA test? You then say your total IgA was in the low normal range. Can you give us the result and the range? Ranges are good, but they don't fit all people, and some people who are within range are actually low. And this can affect IgA results because you don't produce enough of those antibodies for an accurate result. You stated that you had also been eating gluten lite which could affect the results also.

The doctor is so wrong that everything on the panel has to be positive for you to be celiac. One positive score is enough to make you celiac, with the possible exception of the tTG IgA which can be elevated by other things and needs verification. Do you have a printout of your tests and your results and ranges that we could look at for you?

Then we have the Enterolab results which, while indicative, are not definitive because Dr. Fine has never published his studies in any peer-reviewed journal and the medical profession therefore do not accept them.

So: a positive tTG IgA is suggestive of celiac but not definitive - there could be something else causing it. False negative blood tests, and false negative biopsies are common - depending on the skill of the doctor and the pathologist.

On your endoscopy how many samples did the doctor take? In order to be accurate, because the damage to the gut is patchy, he would need to take 4-6 samples because it is so easy to miss and usually cannot be seen with the naked eye. I bet he didn't do that - well, I see that there were "several". Were these while you were eating a full gluten diet?

Next. eating gluten free is not in the least bit dangerous, unless you ignore your vitamins and minerals (things that are normally supplemented in "regular" food), and if you are celiac these will probably be low and need to be tested and restored anyway.because celiac is a disease of malabsorption.

If you have been eating a full gluten diet I believe you should probably have another celiac panel drawn, but let us see the results of the other one first. The fact that you felt better when not eating gluten would indicate that gluten is probably a problem for you, and you should continue to pursue this. Keep eating gluten until you have exhausted your testing options and, if all these fail, give the gluten free diet a very strict trial for at least three months (if you read around on here you will find out how to do that - start with Newbie 101) and we will be here to help you.

[GottaSki]

Welcome Chris!

A bit confused by your statement about tTG and IgA test results.

The panel can include:

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

Total IgA

Do you know which test was positive? The statement of the doc at the time that they all need to be positive is FALSE.

I don't have experience with Enterolab tests, but there are many folks that have used them on this forum.

Eating gluten-free is not dangerous if you do not have Celiac Disease. Many doctors are concerned that you will not get enough fiber and nutrients without gluten - this is FALSE - gluten is not an essential nutrient.

Did your endoscopy report have any language with regard to the inflammation or any language about cellular changes in the biopsies? Not all GIs have experience taking Celiac biopsies and the damage can be spotty, so negative biopsies do not rule out Celiac Disease.

Additionally, you were gluten-lite before blood tests and maybe endoscopy? This could cause all tests to be inaccurate.

I think Shadow is right at this point - it is time to remove ALL gluten for at least three months (six is better) to monitor symptom improvement.

If you have been consuming regular amounts of gluten for the past months, perhaps it would be wise to have another full celiac panel before removing gluten.

So sorry your test results and doctor's advice has been so confusing - keep looking for answers.

Hang in there

[chrise]

Thank you all for replying and clearing some of this up for me. I'm relieved to know eating gluten-free is not going to be "dangerous" even if I'm not Celiac. And also glad to get confirmation that the whole panel doesn't have to be positive in order to render answers.

Mushroom, I'm posting the results below:

Gliadin IgA <3 (range <11 neg)

tTG IgA <3 (range <11 neg)

tTG IgG 24 (range >10 positive)

Endomysial IgA Negative (no range was given it just says "negative")

IgA Lvl 90 (range 81-463)

When this lab was drawn I had been eating gluten "lite" but not radically gluten-free for about 8 months. For example, by "lite" I mean I was not worried about cross contamination, my bread went in the same toaster as the wheat based bread, I used the same butter dish, baked with wheat flour (even though I didn't eat what I made), etc, I did not worry about cosmetics containing gluten, or medications, etc. Basically I wasn't being hypervigilant, just tried to be a little more aware.

The pathologists report says under "Microscopic Description" - Sections show small bowl mucosa in which the crypt to villus ration is normal and there is no crypt hyperplasia. The cell populations on the crypts is normal and there is no increase in intraepithelial lymphocytes. The lamina propria inflammatory cell component is normal. Brunner's glands are present indicative of origin in bulb. There is no histologic evidence of disease.

Under "Gross Description" it says - Received are one slide and one block, each designated "duodenal bulb, 2nd & 3rd duodenum". The requisition states multiple pieces, 0.2-0.5 cm. The slide and block easy how multiple pieces of tissue.

The doctors report says: "Duodenum" Abnormal mucosa was noted throughout the duodenum compatible with duodenitis. Cold forceps biopsies were performed for histology at the duodenal bulb, second part of the duodenum and third part of the duodenum.

Impression: Abnormal mucosa in the stomach compatible with gastritis. Abnormal mucosa in the duodenum compatible with duodenitis. Polyps in the stomach body and fundus, Abnormal mucosa in the esophagus. Otherwise normal EDG to second part of the duodenum.

At the time the endoscopy was performed I had gone from eating gluten "lite" for about 8 months to eating gluten "full" for approximately 1 month.

I think I'll ask my primary care to run another Celiac Panel since some of the tests mentioned (DCP-IgA, DCP-IgG) were not included on the panel I had last year. Are those important? Should I specify that ALL of the ones you listed be included?

Thanks everyone for helping me try to solve this puzzle.

Best,

Chris

[mushroom]

With the exception of the tTG, those are definitely negative results. Even your low normal total IgA isn't that bad, although suspicious. Your pathology report indicated inflammation throughout your upper GI tract (anything with -itis on the end indicates inflammation, and that is often one of the first signs of celiac. He did take samples from all the places he should.

So back to the original recommendation - get another celiac panel drawn and yes, you do need them all because you don't know which will be positive and you only need one. You should get all those that GottaSki listed and you need the IgG versions as well as the IgA because your IgA total is pretty low, meaning you don't produce a lot of it.

Get that done and let us know how it turns out. Don't let the doctor put you off - explain that you were not eating gluten when the last tests were done (getting some cross-contamination doesn't count as eating gluten for testing purposes).

[GottaSki]

Your IgA based tests were likely negative due to your Total IgA being very low in range and that you were gluten-lite for many months before the test. Your IgG was positive and I'd guess that it would have been even higher if you had been eating regular amounts of gluten.

Eight months gluten-lite (not avoiding cc, but not eating gluten ingredients) would certainly be enough to start healing your small intestine - especially if the damage was not yet severe - thus giving the biopsies very little chance for accuracy. There was inflammation noted in the small intestine so I think it safe to say Celiac Disease remains a possibility.

If you have been eating gluten for at least 6 weeks or longer, I'd highly suggest you run another panel.

Full Celiac Blood Panel:

Total Serum IgA

Total Serum IgG

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

The IgG tests are very important for you as your last Total IgA was very low - though not technically deficient.

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Others have posted their docs recommend the addition of:

A, Calcium, Magnesium and Potasium.

Reminder, don't remove gluten until after any further testing is complete. Once the tests are complete, it would be wise to remove ALL gluten to monitor symptom improvement. A positive dietary response coupled with the positive blood test indicate Celiac Disease. Non-Celiac Gluten Intolerance causes symptoms similar to Celiac Disease without the same damage to the small intestine. The only test for NCGI is the elimination of gluten. Given your positive blood test and inflammation while gluten-lite I'd lean towards Celiac if you have a positive response to diet.

I hope you are feeling better very soon!

[chrise]

GottaSki, what is Bs on the misc blood you mentioned?

I am consistently low in potassium as well as Vit D. After nearly a year of taking 8,000 IU of liquid Vit D daily it is now in the low-normal range. I live in the south... with drought conditions!... getting enough sun really isn't an issue for me, so clearly something else is causing the low D. My potassium runs low. Several years ago it was so low I was hospitalized and given potassium intravenously, they couldn't determine why it was so low. It's been consistently low ever since then... not dangerously low now, just low. I have osteopenia so I take liquid calcium/magnesium +D daily. Many of my symptoms would indicate anemia, and Vit B-12 deficiency, but the doctors keep checking and they're always in the "normal" range. I also tend to get dehydrated very easily. I drink SmartWater throughout the day and on days that I have diarrhea I supplement the SmartWater with Gatorade. I'm not a very active person so I'm not getting dehydrated from being over-heated, it just seems to be a chronic state for me right now.

I was diagnosed with sero-negative RA this past spring and started on Humira in July. The diagnosis was based on joint damage seen on x-ray. Do y'all know if Humira could skew the results of the Celiac panel?

Thanks for the help. I know I should ask my doctor these questions, but honestly, I don't much trust what they tell me any more

[GottaSki]

No problem...unfortunately many of us have been in your position with doctors. It is always good to ask them the same questions - but doing your homework ahead of appointments is important - the more you know the more specific and directed questions you can ask.

All Bs - my celiac doc takes a lot of blood. B1, B2, B12 - can't remember but I think B6 too -- minimally you need B12. Your other low nutrients can indicate you are not absorbing nutrients properly - as is true with celiac disease. They don't all have to be low, but if many are it is a strong indicator.

Not sure about Humira - maybe someone else can answer this question better. I do know that steroid medications can impact the blood tests, but I think Humira is a non-steroid med for inflammation - so I just don't know.

I'd think as long as you are eating gluten a new celiac panel would still be a very good choice.

[mushroom]

I was also diagnosed with sero-negative RA initially, later modified to psoriatic arthritis once the psoriasis appeared, which often tests RF negative. I have been taking Humira for four years now and it is an immunosuppressant - specifically it inhibits TNF (tumor necrosing factor) and I do not believe it would affect your autoimmune antibodies but I don't know for sure. My joint pain and swelling have gone -- just a little swelling in my toes and a few times when my elbows lock up. Humira has been a godsend.

[chrise]

@ GottaSki... ohhhh, Bs. Duh! I guess I forgot to mention about my brain also being affected along with my physical issues. Oh my!

Mushroom, I agree, I don't really think the Humira should affect the celiac disease panel but just wondered what y'all thought. Joint pain was the first symptom I experienced once I started eating gluten again years ago. I sometimes wonder if I've done this to myself by not immediately going back to being radically gluten-free once I started experiencing symptoms.

The rheumatologist suspected I had Ankylosing Spondylitis based on the way it started, but there's no damage in my SI or hips, but there is damage in my hands so she's calling it RA.

The Humira has helped my fatigue more than it's helped my joint pain, but because of the stomach inflammation trying to add a DMARD to it has not been successful. The rheumatologist keeps wanting me to try Plaquenil again and the gastroenterologist says for me to not do that. NSAID's affect me the same as the DMARD's so basically all I've been able to do is Humira. I really feel like if I could add something else to the Humira I might be making better progress. But then again, just cutting out the gluten might also be just as effective, if not more-so.

I'm going to call my Primary Care and have her run a Celiac Panel and then I'm going to go gluten-free. I know it helps whether I have Celiac Disease or not. But I do want to know if it's Celiac, my children and grandchildren need that info going forward.

[mushroom]

Humira is all I can do, too. I have been down all the other streets, all the DMARDS, NSAIDs until I went into kidney failure, Plaquenil made my psoriasis flare really badly although it helped with joints. Leflunomide had gluten in it... or if not it might as well have I have had periods when I have had to stop taking Humira and I keep thinking, hey, the diet is working, but then those electric jolts start coming down my fingers and I know I have to keep taking it, although others have had their symptoms clear gluen free -- you could be one of those Yes, get the whole panel run and then go gluten free. What have you got to lose?