Help! Positive Blood Test For Celiac, But Nothing Abnormal On Biopsy. Advice Please!

[IrishHeart 1,642]

UPDATE: Spoke to my g.i. docor's nurse today. They aren't too into the idea of genetic testing because they don't believe I have celiac disease since the endoscopy didn't show anything interesting. At the same time, they want to have a second opinion from another doctor. I don't know what that's about or when that will happen. The nurse really wants me to get my thyroid checked because apparently testing positive for celiac disease on the blood work can mean other things besides celiac disease. 

 

At the same time, this nurse advised me to try going gluten free dairy free for a week and then to call her back. Good thing I have an appointment with the doctor on August 13th, because the nurse confused me a bit. 

 

Anyways, this is my second day being gluten free dairy free. Since beginning, I haven't had any of my daily stomach pains. Not sure if that's a coincidence or not. 

 

 

Well, hon....the nurse is correct. Sometimes,  the elevated TtG can be indicative of thyroid disease,  liver diseases or other autoimmune disorders....however, you have already had a positive response to being G F which to us, speaks volumes.

 

In this case, the genetic test absolutely SHOULD be done to rule out celiac if they are not sure.

 

Either way, you feel better off gluten.... and so, that should be your choice. 

 

And in my world, there are NO coincidences. 

[SMRI 32]

Is your GI a Celiac specialist? 

[Valerie2622 3]

My GI actually specializes in motility disorders because that's what people thought I had (at first).

Today will be my third day gluten free dairy free and since beginning the diet I have had absolutely no diarrhea or stomach pain. Those problems used to happen more than once a day. Wondering what else will change as I continue this diet. I like this change so far, but the fatigue is still around. Slept fifteen hours again last night.

[Gemini 859]

Valerie....did your doc do a complete Celiac panel or just the tTg?  That is important because they should be doing the complete one to compare the results to down the road with repeat testing, to see how you are doing with healing.  They are being thorough in checking your thyroid too because that happens frequently with Celiac.  I have Hashi's thyroid disease, along with Celiac.  Hashi's can raise tTg too BUT......and its a BIG BUT..........you are telling us that the diarrhea and stomach pain have ceased already on your dietary trial.  That wouldn't happen if you didn't have Celiac and thyroid disease only causes diarrhea if you are very hyper-thyroid. You would know if you went that hyper....trust me. 

 

I would ask them to do a full panel, if they haven't already.  Make sure they do the DGP, which tests for reaction to gluten in the blood.  It is usually included in the full panel.  Always ask for copies of all testing...it is your right as a patient.  Do the gene testing.  There are 2 recognized genes for Celiac Disease and, although it does not diagnose Celiac, it will tell you if you have the genetics to trigger for it.  It is a pretty solid test to add to your diagnosis arsenal. And, above all....do not take no for an answer.  Being told you do not have celiac because of a negative biopsy, all the while having a positive dietary trial and a positive blood test, is borderline medical malpractice and the reason many of us went years and got very sick from eating gluten.  We don't want that to happen to you! 

[GottaSki 460]

Exactly what Gemini said!

Hang in there...you are doing all the right things...most importantly...always ask questions

Really glad to here you have seen digestive improvement already....the fatigue will improve...your body will be working hard to repair itself in the coming weeks and even months...listen to it...rest when needed and let us know if we can help.

[BlessedMommy 63]

I'm so glad that you're making the switch to gluten free based on your blood test results. Good for you! I'm disheartened at doctors who send patients on their gluten eating way (or give a "gluten intolerant" diagnosis based on blood but then tell them that they can do a less careful version of the gluten-free diet) based on negative biopsy results.

[IrishHeart 1,642]

Well, I said it, then Gem said it, then Ski said it.....I think we drove that message home. 

 

"absolutely no diarrhea" is cause for celebration around these parts!! whooohoo!

[Valerie2622 3]

They did the TTG Ab, IgA both times. Once a year ago, tested negative that time (9.35 reference 0-15 being normal).

When they repeated it this year because I wasn't feeling any better, I tested positive this time (43.53 reference 0-15 being normal)

I'm lactose intolerance but I didn't used to be. My vitamin D last year was so low that they put me on prescription strength for a while. Just recently got it retested. I am 33, with the normal range being 33-100.

It's taking forever for the doctor to respond to my messages because he's out on vacation this week and next week

[Gemini 859]

I forgot to add that you should definitely have the thyroid tested because sleeping for 15 hours sounds like a thyroid problem.  That was me...if my thyroid even gets a tiny bit low, an earthquake might not get me out of bed for work. 

 

Last thing...and sorry for the TMI moment here...........my explosive, watery diarrhea stopped completely on day 3 of the gluten-free diet.  I did nothing else but eat gluten free and yes, that included gluten free bread.  I never took one anti-diarrheal med.  That is the power of going gluten free and was my supreme AHA! moment.  I was wasting away and weighed 94 pounds and yet.......tummy felt much better by day 3.  Like Irish stated...there are no coincidences.

[Valerie2622 3]

I went to another farmers market today, this one is in my town. They sell the most amazing hummus ever! Aaand the orange cherry tomatoes are around this time of year so I got those too. Here I was thinking I would feel deprived because there wouldn't be much to eat. WRONG. My lunch today was stir fried chicken with rice and beets. A feast!

[Gemini 859]

They did the TTG Ab, IgA both times. Once a year ago, tested negative that time (9.35 reference 0-15 being normal).

When they repeated it this year because I wasn't feeling any better, I tested positive this time (43.53 reference 0-15 being normal)

I'm lactose intolerance but I didn't used to be. My vitamin D last year was so low that they put me on prescription strength for a while. Just recently got it retested. I am 33, with the normal range being 33-100.

It's taking forever for the doctor to respond to my messages because he's out on vacation this week and next week

Ya beat me to it, Valerie! 

 

What I said earlier.......do that!  You need a full Celiac panel done and not just the tTg.  Those results are very telling. Most definitely an EMA on that panel because the EMA is very specific to Celiac Disease.  No other disease will cause a positive on that one.  You do need to be eating gluten again for testing. I know it hasn't been long since you went

gluten-free but they won't be doing another blood test tomorrow.  BTW....I totally believe you have Celiac but I mention this because if you want to try your best for an official diagnosis to convince the Doubting Thomas's....... this is your best shot.  And if the doc had done the whole panel to begin with, they would know by the other tests run whether it was most likely Celiac, from blood work alone.  Why is it that I know this and many others know this but the docs never do complete testing....unless you are lucky?

 

It's a pleasure talking with you.  Your answers are so concise and you answer just what you've been asked.  Smaht lady.......

[Valerie2622 3]

I'm waiting for a call back from my primary care doctor about going to the lab to check out my thyroid. I'm so happy to not be in pain and on the toilet all day lol

Now if I could just get out of this brain fog and get a diagnosis. Well, let's put it this way: progress is being made after a year of winging it. At long last!

[Valerie2622 3]

When the doctor comes back from vacation, I will go to my appointment on August 13th, and beg for more blood work about celiac disease. For now, none of the nurses are willing to budge because they keep telling me they need to differ to the doctor, who is taking forever to respond. I will be patient, but in the mean time, I'll get all my basis covered that I can. (Thyroid, gluten free dairy free food, etc)

[GottaSki 460]

When the doctor comes back from vacation, I will go to my appointment on August 13th, and beg for more blood work about celiac disease. For now, none of the nurses are willing to budge because they keep telling me they need to differ to the doctor, who is taking forever to respond. I will be patient, but in the mean time, I'll get all my basis covered that I can. (Thyroid, gluten free dairy free food, etc)

 

Sounds good and I know it is frustrating.

 

This is important -- If you still need more celiac antibody tests -- you need to continue to ingest at least one slice of glutenous bread per day.  

 

It seems ridiculous to keep ingesting something you know is making you feel crappy (pun intended), but it is important because the antibody blood tests measure antibodies your body produces in reaction to the gluten protein.  

 

Remove all gluten and the antibody levels come down -- sometimes this takes times, but sometimes just a few weeks can reduce them leaving you and your doctor with incorrect information.

[nvsmom 334]

Yep, the ladies are giving you great advice.  Keep eating gluten, if you can, if you are getting more testing done.  Once a celiac stops consuming gluten her test results will eventually fall to normal - in some that happens in a matter of weeks, for others it can take months or years.  Remember, if you want to retest after being gluten-free for a time (weeks or months), you will need to do a gluten challenge of 1-2 slices of bread per day for 8-12 weeks.... often not a pleasant experience.

 

Hashimoto's hypothyroidism can elevate the tTG IgA a bit (as can crohn's, colitis, diabetes, liver disease or a serious infection) but it doesn't raise it high like celiac disease can; it will just cause a weak false negative, not 3 times the normal upper limit. Also, false positives are not common; only about 5% of positive tTG IgA tests are caused by something other than celiac disease

 

Take me for example, after decades with the disease, my tTG IgA was over 200 (my upper range was 20). After being gluten-free for a year, my tTG IgA was in the 20's. I attribute that to my Hashi's, and to the fact that I went undiagnosed for so long.  My EMA IgA was also positive when I was diagnosed but was negative after one year gluten-free, so I doubt I was getting glutened.

 

If your positive tTG Iga was caused just by Hashimoto's, I would guess your tTG IgA would have been a 16 or 17, not in the mid 40's. KWIM?

 

... Plus Hashi's tends to cause constipation, not in everyone but it is  a common symptom.

[Valerie2622 3]

In a few hours I have an appointment with my primary care to figure out which blood tests to do (most likely thyroid but perhaps they will want to check other areas out too, not sure)

Interestingly enough, I had chronic constipation according to x-rays about a year ago, but after the "clean out" for the endoscopy/colonoscopy a few weeks ago, everything changed over to diarrhea.

Oh nooo the gluten challenge D:
I dread that with all my heart. Hopefully doctors will just accept the blood work I already had as proof enough. I've had three days (today being the forth... so far so good) of having no stomach pain and no diarrhea, probably because I am GFDF.

I'm curious to see what my primary care doctor is going to think of everything. Well, only time will tell. One thing I've discovered with all these appointments is the importance of patience

[BlessedMommy 63]

Why a gluten challenge? Do they want to redo the endoscopy? (sorry if you mentioned that already and I missed it!)

[Valerie2622 3]

They (might) want to redo the blood work. Hopefully not. I'm at my primary care right now, waiting to be called in to discuss what blood work should be done.

[Valerie2622 3]

UPDATE: My primary care doctor looked at the blood work that I already had done and goes "This looks like celiac to me. Why did that nurse want to check thyroid?"

Just to cover all the bases, I had blood taken to check out the thyroid and iron levels. She also did a Complete Blood Count. For now, she suggested staying GFDF because it's helping so much. She thinks that when I see my g.i. doctor on August 13th that everything will be clearer. In the mean time, my primary care will be calling tomorrow or Friday to discuss the results.

Continuing to eat healthy over here. Lunch was stir fried chicken and spinach with rice. My favorite food is white rice.

[SMRI 32]

That is great news--well, not so great that you have Celiac but great that your dr is on board!!

[BlessedMommy 63]

I like white rice too! My favorite types are basmati and jasmine.

 

I'm glad that your primary care doctor is on board!