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Ttg Is Back Down- Question About My Story

KristinIrwin

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KristinIrwin Apprentice
KristinIrwin
Posted

Okay so I feel like I am always posting on here but I have another question.

 

My doc ran a ttg on February 22nd. Mine was 7 with 4 being normal. I was advised to go gluten free, so I did for a little under a week. But then they called back and said to go back on gluten so I can get a biopsy.

So he did a biopsy on March 13th and my villi structure was normal but I had an increased number of Intraepithelial lymphocytes.

 I went off of gluten until my next appointment on April 5th. I did feel better. Not completely, bu definitely better. My doctor told me that I could have early stage or latent celiac, but that I could eat gluten if I wanted to (I know, what the hell.. I am just as confused as you probably are while reading that)

 

So on April 5th my doctor ran some of the Prometheus lab. He did the Crohns panel and the entire Celiac Panel (even though i told him I had been off of gluten for almost a month...)

 

I just got my results: Crohns tests normal and celiac tests normal (INCLUDING TTG). I do not have a copy of my exact results, but do plan to get them.

 

SO I am curious as to why my ttg went down.The nurse that gave me my results said that it could be from me going off of gluten but she wasn't sure. I have another appointment scheduled may 1st and she said to ask my doc then.

 

My feeling is that I do have early stage celiac and need to stop eating gluten, which I plan on doing. I just want to see if any of you know if my lowered ttg could be from being gluten free for a little while.

 

Is a little under a month of being gluten free enough to lower the TTG back to normal range?

 

Thank you!

Kristin

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mushroom Proficient
mushroom
Posted

Two weeks is generally considered to be the absolute cutoff for gluten free eating not potentially affecting test results (some would say one week)  -- in which case a gluten challenge needs to be done.  I would consider one month far too long for valid results.

 

An increased number of intraepithelial lymphocytes on biopsy is indicative of potential early celiac damage.

 

If you really want a diagnosis you will need to go back on gluten for (I would recommend) six weeks -- since it sounds like you are very early stages -- but if you feel strongly enough that gluten is not for you I would also be supportive of just going gluten free and being done with being messed around by doctors.

nvsmom Community Regular
nvsmom
Posted

It looks like you have celiac disease to me.  Your tTG test was almost double the lab's normal high limit - that's a significantly positive test. As Neroli said, your biopsy showed possible early stages of celiac and who knows, perhaps they didn't even biopsy the most damaged parts - the surface area of the small intestine is about the same as a tennis court and if the villi damage was not uniform, it wouldn't be too hard to miss it.

 

If you were doing a good job on the diet, and your body responded quickly, it is entirely possible that your tTG labs could fall to within normal that quickly. We're all different. Some will continue making autoantibodies for months or years, others will stop as soon as the gluten is gone from their system... you could be one of the lucky ones.

 

If you are starting to feel better on the gluten-free diet, you could consider that further confirmation that you have celiac disease. The only other option you have is to resume eating gluten for a month or so and then retest. If you do retest, you might want to have the doctor include the DGP, EMA and even AGA tests, as well as the total serum IgA test - if you are making yourself eat gluten, you might as well test the whole lot.  Good luck!

GottaSki Mentor
GottaSki
Posted

Okay so I feel like I am always posting on here but I have another question.

 

So he did a biopsy on March 13th and my villi structure was normal but I had an increased number of Intraepithelial lymphocytes.

 

Is a little under a month of being gluten free enough to lower the TTG back to normal range?

 

Never apologize for asking questions -- it is the only way you can figure this out.

 

My thought is these biopsies show just a glimpse of your villi and of the samples taken there was damage that can be attributed to the early stages of Celiac Disease -- it is possible there is more severe damage in places samples were not taken.

 

Maybe.

 

 

Sorry for the colorful answer...distracting myself from the news of the day.  For what it is worth - my gut says celiac disease.

dilettantesteph Collaborator
dilettantesteph
Posted

Look at this reference: Open Original Shared Link

 

It looks like increased lymphocytes indicate celiac disease.  I think that this would be especially the case since you had already started the gluten-free diet.

 

I would say that it is a very good sign that you blood levels were already down after a month.  It would seem to indicate that you are responding well to the diet.

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