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Multiple Questions...

Lissa283

By Lissa283
in Coping with Celiac Disease

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Lissa283 Rookie
Lissa283
Posted

First question....I accidentally ate gluten in a marinade that was on some meat two nights ago and I'm still having diarrhea, gasiness and tiredness.  How long does it take to get better?

 

Second question....I'm supposed to have a follow up TTG level checked in about a month....if I accidentally ate gluten, will my numbers be up?  How long does it take for TTG to come down once you stop eating gluten?

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nvsmom Community Regular
nvsmom
Posted

I'm sorry you had a gluten hit.  Ugh.  :(

 

How long symptoms last is sometimes a different issue than how long it takes to get well.  Symptoms often last between a few days to a few weeks (often 2 or 3) but symptoms may change over that time.  I took a hit over Christmas.  The stomach lasted a couple of hours, the bloating lasted a few days, but the fatigue and headache was with me well into January.

 

Internally, the recovery could take a few weeks depending on how much your immune system overreacted.

 

It is unlikely that an accidental glutening will affect a follow up tTG level.  That test is not a good one for dietary compliance because the numbers can take so long to change.  The DGP tests are MUCH better for checking that.  I would guess that at least half of all celiacs do not have a normal tTG at 3 months gluten-free, and over half are normal at 6 months.  There is a minority of celiacs whose numbers can stay slightly elevated for a year or three even if they are completely gluten-free; mine was still elevated at almost a year gluten-free and I haven't checked it since.  It just takes some people's system's longer to catch on that gluten isn't being consumed any longer.  LOL

Lissa283 Rookie
Lissa283
Posted
  • Author

I'm sorry you had a gluten hit.  Ugh.  :(

 

How long symptoms last is sometimes a different issue than how long it takes to get well.  Symptoms often last between a few days to a few weeks (often 2 or 3) but symptoms may change over that time.  I took a hit over Christmas.  The stomach lasted a couple of hours, the bloating lasted a few days, but the fatigue and headache was with me well into January.

 

Internally, the recovery could take a few weeks depending on how much your immune system overreacted.

 

It is unlikely that an accidental glutening will affect a follow up tTG level.  That test is not a good one for dietary compliance because the numbers can take so long to change.  The DGP tests are MUCH better for checking that.  I would guess that at least half of all celiacs do not have a normal tTG at 3 months gluten-free, and over half are normal at 6 months.  There is a minority of celiacs whose numbers can stay slightly elevated for a year or three even if they are completely gluten-free; mine was still elevated at almost a year gluten-free and I haven't checked it since.  It just takes some people's system's longer to catch on that gluten isn't being consumed any longer.  LOL

I just realized that they are going to check both the ttg and the dgp.  Why would they check the dgp if they never checked it before I went gluten free?  How will they know if I'm improved? How long does it take the dgp and ttg to go back to normal in mild disease? Will my numbers be better if I accidentally ate gluten a couple times in the 2 month period before retesting??

cyclinglady Grand Master
cyclinglady
Posted

The learning curve for celiac disease is steep. I think most doctors do not re-check until six months after diagnosis. Because people make lots of mistakes in the beginning. It can take a long time to heal. Some up to three years or more depending in the severity of damage (two years for me). My antibodies were barely positive at the time of my diagnosis but my biopsy revealed moderate to severe intestinal damage. I have yet to have a follow-up celiac blood panel for that reason. However, my vitamin and iron levels and bone density tests have been tested since and those are now normal (not my bone density....)

If you are stressed about the test, then wait. Keep to the gluten free diet. Next time, just ask for the complete panel. Insurance should pay for it. And like NVSMOM said, get the DGP test for sure.

Your best test is how you feel!

cyclinglady Grand Master
cyclinglady
Posted

Even though you do not have a DGP benchmark, it is still good to get, it helps test for dietary compliance. Who knows how well or fast you will heal? Everyone is different. And I am not sure a few accidental glutenings will affect the test.

Again, if you are worried, then postpone the test.

nvsmom Community Regular
nvsmom
Posted

I just realized that they are going to check both the ttg and the dgp.  Why would they check the dgp if they never checked it before I went gluten free?  How will they know if I'm improved? How long does it take the dgp and ttg to go back to normal in mild disease? Will my numbers be better if I accidentally ate gluten a couple times in the 2 month period before retesting??

 

Ditto Cyclinglady.  They check DGP for dietary compliance.  The DGP tests tend to change more quickly with changes of diet compared to the tTG tests.  A tTG can stay elevated for many months after going gluten-free, up to a few years.  Mine was still elevated at 9 months gluten-free, although it had gone done.

 

The DGP test results will fall back to normal more quickly.  From what I have seen, they are usually normal by 6 months or sooner.  

 

Do not eat gluten before retesting for dietary compliance.  You want those numbers to start going down as soon as possible after going gluten-free.  That's the main thing they'll e looking for when they test - that the numbers are going down.  Ideally your tTG will be lower to normal, and your DGP will be normal.

 

How long will you have been gluten-free when they do the follow-up test?  It is often a good idea to wait a good 6 months because not everybody's body will start improving by then.

Lissa283 Rookie
Lissa283
Posted
  • Author

They were wanting me to be gluten free for 2 months prior to the retest.  How long does it take for the dgp to be normal with mild disease?  They say I probably have mild because my endoscopy was normal, but my lab tests were elevated, so they want to confirm diagnosis with the follow up labs.

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nvsmom Community Regular
nvsmom
Posted

The DGP comes down faster than the tTG (as a very general rule) so I would guess a few weeks to a few months.

 

If you can, delay getting retested for at least 3 months on the gluten-free diet, 6 months would be even better.  Your labs will most likely be coming down by then.

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