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3 1/2 Months Gluten Free And Blood Test Still High, Is This Normal?

HavaneseMom

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HavaneseMom Explorer
HavaneseMom
Posted

Hi Everyone,

 

I was diagnosed with Celiac through blood test and biopsy and have been gluten free since early October. I have had a somewhat slow recovery, still experiencing some nausea, fatigue and brain fog, so my Gastro doctor just had me re-do the Sprue Serology blood work. All of the number have dropped significantly, but one remains above normal.

 

The phone nurse said that all of my numbers should be below 20 at this point and that I am probably eating some hidden gluten (I am really strict about what I eat so this idea is upsetting to me), but I thought I had read that it takes some time for the blood test numbers to drop in to "normal" range. I was undiagnosed and sick for at least 20 years before finally getting diagnosed with Celiac Disease (my doctor diagnosed everything as stress/anxiety related!). After being sick for so long, should my numbers be below 20 and in the normal range after just 3 1/2 months of being gluten free?

 

Just for reference, here are the original numbers from my diagnosis:

TTG IGA: 157

TTG IGG: 8

Gliadin AB IGA: 170

Gliadin AB IGG: 65

The "normal" range for all of these test would be below 20.

 

Here are the numbers from my blood drawn this past Monday:

TTG IGA: 34

TTG IGG: 4

Gliadin AB IGA: 18

Gliadin AB IGG: 19

The "normal" range for all of these test should also be below 20.

 

 

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kareng Grand Master
kareng
Posted

Hi Everyone,

 

I was diagnosed with Celiac through blood test and biopsy and have been gluten free since early October. I have had a somewhat slow recovery, still experiencing some nausea, fatigue and brain fog, so my Gastro doctor just had me re-do the Sprue Serology blood work. All of the number have dropped significantly, but one remains above normal.

 

The phone nurse said that all of my numbers should be below 20 at this point and that I am probably eating some hidden gluten (I am really strict about what I eat so this idea is upsetting to me), but I thought I had read that it takes some time for the blood test numbers to drop in to "normal" range. I was undiagnosed and sick for at least 20 years before finally getting diagnosed with Celiac Disease (my doctor diagnosed everything as stress/anxiety related!). After being sick for so long, should my numbers be below 20 and in the normal range after just 3 1/2 months of being gluten free?

 

Just for reference, here are the original numbers from my diagnosis:

TTG IGA: 157

TTG IGG: 8

Gliadin AB IGA: 170

Gliadin AB IGG: 65

The "normal" range for all of these test would be below 20.

 

Here are the numbers from my blood drawn this past Monday:

TTG IGA: 34

TTG IGG: 4

Gliadin AB IGA: 18

Gliadin AB IGG: 19

The "normal" range for all of these test should also be below 20.

 

 

Those are great results.  It can take a while to stop making the antibodies after you go gluten-free.   They went way down and, if they test in 3 months, they will likely be "normal"

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Thanks kareng!

When the phone nurse was telling me my new numbers, I was really excited and proud that my hard work had paid off.

Then she said I am probably still eating gluten since one of the numbers was still elevated and said they wanted me to see a dietician and have the test run again in about 6 weeks and also have a follow-up appointment with the doctor.

That brought me down really quick. I am glad they are being so thorough though.

I think I will put off the follow-up appointment and blood work so that they fall a few months from now, and hopefully everything will be "normal" like you said. My first couple of months gluten free were really rocky, but I have been seeing steady improvement over the last 6 weeks (yes!!!), so I'm sure those numbers will only get better.

kareng Grand Master
kareng
Posted

Thanks kareng!

When the phone nurse was telling me my new numbers, I was really excited and proud that my hard work had paid off.

Then she said I am probably still eating gluten since one of the numbers was still elevated and said they wanted me to see a dietician and have the test run again in about 6 weeks and also have a follow-up appointment with the doctor.

That brought me down really quick. I am glad they are being so thorough though.

I think I will put off the follow-up appointment and blood work so that they fall a few months from now, and hopefully everything will be "normal" like you said. My first couple of months gluten free were really rocky, but I have been seeing steady improvement over the last 6 weeks (yes!!!), so I'm sure those numbers will only get better.

 

 

 it probably takes a few weeks to figure out how to eat gluten-free.  

 

There was a study done in Finland to determine if 20 ppm is a safe amount for a Celiac to eat in food.  They gave different groups different amounts of food for a couple of weeks & then let them be gluten-free again.  The antibodies of the group they gave a lot of gluten to went up 2 weeks after they had returned to gluten-free.  They didn't test them after that.  Would have been interesting.

KCG91 Enthusiast
KCG91
Posted

Wow, those numbers look really good to me. I am getting my three month blood test results tomorrow and also started at over 128u/ml for ttg IgA - from what I've read on here about how long it takes for antibodies to reduce I'll be extremely happy to get results like those :) 

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Thanks Katie!

 

I am feeling much better about those numbers now. I hope your numbers come back good tomorrow. Maybe you can share your results? I see you have anemia too. I found out that my ferritin is up from a 2 at my diagnosis to a 8 today too, so hopefully yours is improving too.

 

I was thinking about the situations a little bit more. My Gastro doctor is on vacation leave and his Physicians Assistant is covering for him. She is super nice and thorough, but I am wondering if maybe she doesn't realize that it might take a little bit longer for the numbers to drop to normal. You guys have made me feel better about it though.

RMJ Mentor
RMJ
Posted

Those numbers look good. My TTG IgA was still above normal after 4 months. It was finally normal after a year, although my DGP IgA was still high after a year.

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KCG91 Enthusiast
KCG91
Posted

I will do. My levels were 3g/l and 3% at diagnosis and I've been taking iron for two months so fingers crossed! Interesting point about the assistant - I didn't want to say anything because the system is different here in the UK but I never pay too much attention to the nurses/receptionists who are allowed to give out test results. 

GottaSki Mentor
GottaSki
Posted

Those numbers are very pretty ;)

 

The difference since removing gluten is important ... you could probably teach the dietician about living gluten-free!

 

I'd wait until your six month mark for the next panel.

 

Great work :)

nvsmom Community Regular
nvsmom
Posted

Looks good to me too. My tTG IgA was still a 34 when I was one year gluten-free. You're doing great.:)

 

If numbers are still high after 6 months or a year, there is a small chance that other health issues could raise it. Hashimotos, diabetes, crohn's, colitis, liver disease, and infections can all raise a tTG IgA test to a weak positive.

KCG91 Enthusiast
KCG91
Posted

So I got my test results back - my ttg IgA has dropped to 22 u/ml! (Normal is below 7) I am so chuffed with this. They didn't, for some reason, test my iron in the same way :s but apparently the size of the red blood cells indicates that the anaemia is coming under control.

KCG91 Enthusiast
KCG91
Posted

It also occurred to me that if the practice nurse had handed me back those results she would have been interpreted it as a serious problem, because she didn't know the history/progression of celiac disease, whereas they are actually pretty good. 

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Wow Katie! I'm so glad to hear your numbers are looking so good! Thanks for sharing them.

 

Everyone's advice and input has been soooo helpful.

 

I am going to cancel my appointment with the dietician and save the money I would have spent on that for some gluten free goodies.

 

Nicole/nvsmom, Thanks for mentioning that a weak positive after 6 months to a year might indicate another issue. I will make sure to keep following up on my blood work just in case something else is going on with my body. I am still really tired, gaining too much weight, look puffy a lot and my stomach is not 100% yet, but some of those things could be caused by my lack of exercise too. I stopped exercising a while back when the anemia set in, because I was feeling really light headed and thought I might faint. I am going to start back up slowly and get on the treadmill today. Hopefully by my 6 month check up my number will look even better and I will be feeling great.

1desperateladysaved Proficient
1desperateladysaved
Posted

My iron numbers initially went down after going gluten free  I am glad to hear the ferritin levels are up!  I had the immature red blood cells that are too large.  It is a good thing to be rid of it. 

 

D

Gemini Experienced
Gemini
Posted

Thanks kareng!

When the phone nurse was telling me my new numbers, I was really excited and proud that my hard work had paid off.

Then she said I am probably still eating gluten since one of the numbers was still elevated and said they wanted me to see a dietician and have the test run again in about 6 weeks and also have a follow-up appointment with the doctor.

That brought me down really quick. I am glad they are being so thorough though.

I think I will put off the follow-up appointment and blood work so that they fall a few months from now, and hopefully everything will be "normal" like you said. My first couple of months gluten free were really rocky, but I have been seeing steady improvement over the last 6 weeks (yes!!!), so I'm sure those numbers will only get better.

Apparently, the "phone nurse" is pretty clueless about Celiac Disease, like so many out there. You are doing a great job so don't listen to them.  :D

nvsmom Community Regular
nvsmom
Posted

Nicole/nvsmom, Thanks for mentioning that a weak positive after 6 months to a year might indicate another issue. I will make sure to keep following up on my blood work just in case something else is going on with my body. I am still really tired, gaining too much weight, look puffy a lot and my stomach is not 100% yet, but some of those things could be caused by my lack of exercise too. I stopped exercising a while back when the anemia set in, because I was feeling really light headed and thought I might faint. I am going to start back up slowly and get on the treadmill today. Hopefully by my 6 month check up my number will look even better and I will be feeling great.

 

I have thyroid problems (probably Hashi's) so I think that's why my numbers like to stay a bit higher than most celiacs do. Hashi's, diabetes, and other autoimmune diseases are linked to celiac disease, so it's a good idea to keep an educated eye open for them just in case they crop up... Hopefully they never do!  :)

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