Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Igg, Ttg Normal After Going gluten-free? Huh?

chgomom

By chgomom
in Coping with Celiac Disease

Recommended Posts

chgomom Enthusiast
chgomom
Posted

Doc says now, per the most recent labs, my IGG went from 24, about 4 months ago, to 7 just a few days ago. She said this can happen when you go gluten free. She saif my TTG went back to normal. And I showed no genotyping for it now. Weird? Can this really happen once you go gluten-free? SHe said as far as labs are concerned there is no celiac indicators in my blood anymore.

She said though I still obviously have the Osteo and deficiencies in the following:

A

D

Zinc

B12

She said we're just going to maintain the vigilant gluten-free diet, and keep vigilant on the supplements because the blood work shows good things. She also said no biopsy is needed with that kind of response.

really????

I'm confused...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


chgomom Enthusiast
chgomom
Posted
  • Author

Any ideas,,,,,?? Suggestions....or ever had this happen??

Lisa Mentor
Lisa
Posted

I can't help you with your numbers, but I too have similar defficiences.

LKelly8 Rookie
LKelly8
Posted

You've removed the trigger - gluten - and now your antibody levels have returned to normal. Congrats! Your immune system is no longer attacking your small intestine! :lol: Keep up the gluten-free diet and your vitamin/mineral deficiancies should improve as well.

chgomom Enthusiast
chgomom
Posted
  • Author

She was saying I might not actually have celiac.....because it usually doesn't improve that quickly.

But from everything I have seen here.....You go gluten free and if you are strict, the levels....can improve not over night but in a reasonable amount og time.

The PA and doc both said though, this is such a common phenomenon in the celiac community...which she said is good for me....means I don't need a biopsy because he labs (the positive ones were from another doc) don't show the antibodies....she said our task now is to stay strict....fix the deficiencies...and re check in a couple of weeks...and then every couple of months.

happygirl Collaborator
happygirl
Posted

Hey girl,

Ok heres the deal. What is happening to you is good news and is what is supposed to happen!

When you are a Celiac and are ingesting gluten, your numbers are elevated. They are elevated because you are ingesting the trigger (gluten) and your body increases the antibodies, as a result of an autoimmune response that occurs in Celiacs WHEN THEY EAT GLUTEN.

When you are not eating gluten, the antibodies stop being produced. Your numbers *should* return to numbers. In his book, Dr. Green says that blood tests at 6 months can (and, potentially, should) be back to normal......so in four months, for someone who has been vigilant and the right circumstances (this does not apply to those who have other issues and "difficult" Celiac!)---they could certainly return in four months. I'm surprised that your doctor told you this, honestly. From everything I have read and know, your doctor is misguided on the Celiac part.

The goal is to be back to "normal." We will always have Celiac, but as long as the gluten is out, we don't have quote "active, raging" Celiac---in terms of the antibodies. Every blood test I have had post gluten free has had negative bloodwork---that is a sign that you are doing WELL! You should be congratulated and feel so good. It does NOT mean that you don't have Celiac!!!!!

And, you don't need your numbers checked every few months unless you are having complications. I highly, highly, highly recommend Dr. Peter Green's book, "Celiac Disease: A Hidden Epidemic". It will answer all your questions and will be a good guide for you to use with your doctor. If you have more questions, let me know and I'd be happy to look it up in this book. He is a leading Celiac expert at Columbia.

I hope this helps clear up the confusion. CONGRATULATIONS!

par18 Explorer
par18
Posted
Doc says now, per the most recent labs, my IGG went from 24, about 4 months ago, to 7 just a few days ago. She said this can happen when you go gluten free. She saif my TTG went back to normal. And I showed no genotyping for it now. Weird? Can this really happen once you go gluten-free? SHe said as far as labs are concerned there is no celiac indicators in my blood anymore.

She said though I still obviously have the Osteo and deficiencies in the following:

A

D

Zinc

B12

She said we're just going to maintain the vigilant gluten-free diet, and keep vigilant on the supplements because the blood work shows good things. She also said no biopsy is needed with that kind of response.

really????

I'm confused...

Doc says now, per the most recent labs, my IGG went from 24, about 4 months ago, to 7 just a few days ago. She said this can happen when you go gluten free. She saif my TTG went back to normal. And I showed no genotyping for it now. Weird? Can this really happen once you go gluten-free? SHe said as far as labs are concerned there is no celiac indicators in my blood anymore.

She said though I still obviously have the Osteo and deficiencies in the following:

A

D

Zinc

B12

She said we're just going to maintain the vigilant gluten-free diet, and keep vigilant on the supplements because the blood work shows good things. She also said no biopsy is needed with that kind of response.

really????

I'm confused...

I'm not confused. This is exactly what I would expect from someone who is gluten intolerant/Celiac. I did not have blood tests done before I was Dx'd via biopsy in May 05. I have no doubt the levels were elevated though as I was pretty sick. I did however get a follow-up blood test 1 year into the diet. "All" my blood test results were normal. Actually the value for each of the five tests in the panel were 1's. Since I have felt perfectly healthy since going gluten free this was no surprise to me. If someone were to look at my bloodwork without any background they could not diagnose me as being Celiac. I know that I am and will continue to stay on the gluten-free diet. Be thankful you do not need a biopsy. Sounds like your doctor is right on.

Tom

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Just wanted to add---Tom made a good point. The blood tests measure the production of antibodies, which is how the medical community operationalizes the reaction to gluten. The goal is to stop the eaction, which would decrease the antibodies. We still have Celiac, but we are not setting off the autoimmune reaction, which is the goal!

:)

chgomom Enthusiast
chgomom
Posted
  • Author

Yeah...her exact words were

"You don't show any celiac now because you don't have positive antibodies or the gene"

So they are only going to treat it as vitamin deficiency...and they aren't going to code it celiac as I alter found out today.

Makes no sense. POsitive blood work across the baord, went gluten free, now negative blood work, minus severe deficiencies and osteo. Sounds text book to me...

And the office said we know it happens all the time....so why would they not code it as such...because I'm not having the biopsy?? Soooooooooooo confused......

I mean positive blood work, and dietary response with proof in my teeth, deficiencies and osteo.....to me....if it walks like a ducks...and talks like a duck....it is a duck...

tarnalberry Community Regular
tarnalberry
Posted

you show the appropriate improvement on your blood tests and the doc thinks that's weird? I think her response is weird!

Lisa Mentor
Lisa
Posted

Sounds like you have a "duck", and welcome. :)

happygirl Collaborator
happygirl
Posted

lol...so they did the gene testing and you came back negative for DQ2 and DQ8? (Just trying to clarify from previous posts)

(By the way-----I am one of those people who say I don't care how you were diagnosed or if you have a diagnosis at all......but if gluten free makes it better, embrace it! So I'm not questioning you :D )

As Lisa said, welcome to the club, duck.

mouse Enthusiast
mouse
Posted

Tom, I have a question. I have been gluten free for over 2 1/2 years and have asked for the complete panel to be done. Which I had done the week before last. I am having more neuro problems and want to check if I am being complacient or what. I will know the numbers next week. Since you had 1's on each of the tests after one year, does this mean that mine should also be in the single digit after 2 1/2 years? Thanking you in advance for your response.

chgomom Enthusiast
chgomom
Posted
  • Author

Right all my blood work in June, was positive HIGHLY>

Then I had a subsequent series of tests...those were not as high but positive (different doc these times)

Then she runs labs the 12th....and says what she said about not having celiac...because they were negative.

Mind you I have been gluten-free since June 27th. She I don't have it.

But I have soft tooth enamel...my periods have come back being gluten free....I am deficient in all sorts of things....I have the osteo....porosis and penia....What more could there be???

And yes...the genotyping that was done were those...

bremac Apprentice
bremac
Posted

It sound like you have celiac disease to me. I don't know about the genotyping thing though. But about tTG, if it was "only" 24 to begin with, I don't think it's unreasonable that it would drop down to normal that fast. Mine was over 80 when I was diagnosed and still only took about 2 months for it to become normal. If your antibodies are low though, that means you're doing well keeping gluten free. :)

Guest nini
Guest nini
Posted

what your Dr. says makes no sense... of course your numbers are returning to normal, that is what is supposed to happen when you remove the offending trigger (gluten)... so she's saying because you got better on the gluten-free diet YOU DON'T HAVE CELIAC????? That's just insane. Of course you have Celiac, YOU GOT BETTER on the gluten-free diet! That is what is supposed to happen. It is only rare cases of refractory sprue where someone's numbers don't go down and they don't improve despite being on a gluten-free diet. Now, from an insurance standpoint, you almost DON'T want them to code it as celiac because you can be denied health insurance in the future because of that dx (yes it happened to me) But for them to be so clueless to think that if you get better on the gluten-free diet that must mean you don't have celiac? That's silly! Unless they meant that they expect Celiacs to get better on the gluten-free diet, which is how it should be...

sounds like a duck, walks like a duck, it's a duck...

Quack Quack!

Gamecreature Rookie
Gamecreature
Posted

Okay, I'll say it. Find another doctor. You health is too important to rely on the treatment of someone who chooses to remain misinformed on diagnoses and treatment.

chgomom Enthusiast
chgomom
Posted
  • Author

Yeah she said you don't have the geen and your blood work is negative so you don't have it.

Positive blood work, and then my levels returning to normal mean enough to me....

I don't barf or hav D anymore....outside of the odd occasion where what I ate.....just doesn't agree with me...and when they did the challange...I was in the hospital within 4 or 5 days

par18 Explorer
par18
Posted
Tom, I have a question. I have been gluten free for over 2 1/2 years and have asked for the complete panel to be done. Which I had done the week before last. I am having more neuro problems and want to check if I am being complacient or what. I will know the numbers next week. Since you had 1's on each of the tests after one year, does this mean that mine should also be in the single digit after 2 1/2 years? Thanking you in advance for your response.

Hi,

Just saw your question. As far as I know the only way one can probably tell how well they are avoiding gluten would be a blood test or biopsy. Because I felt so fine I almost did not do the follow-up blood test this past August. It was good that I now have a reference of the anti-body counts to go by. Are neuro issues the only problems you are having? Were they the reason you went gluten free in the beginning? I quess what I am asking is whether you have noticed improvements since going on the gluten free diet 2 1/2 years ago. In my case the issues were all gastro and they have completely gone since being on the diet. I also feel very healthy and that is the main indicator for me. As far as the single digit question I don't know how much difference it makes but my lab work was done by Lab Corp in Burlington N.C.

Tom

mouse Enthusiast
mouse
Posted

Thanks Tom for taking the time to answer. I had become the classic Celiac by the time of diagnosis - 53 pound weight loss, D, bedridden, dehydrated. I had had some neuro problems that came and went for about 8 years before the Celiac diagnosis. But, when I saw a doctor for those problems they rolled their eyes. They did diagnose me with familial tremors during that time. Then this past Jan. I was diagnosed with Glutin Ataxia and I got the impression that if I remained gluten free that they should not get any worse. Then a few months ago, the neuro problems started again and even added some new neuro symptoms and that is why I asked for the blood panel to be done again. I just want to make sure that I have not become jaded and am letting gluten into my body. But, when I asked on this forum before, no one really gave me a range on where the numbers should be. By the way I am 64 years old. And I am in AZ and we use a different lab here.

chgomom Enthusiast
chgomom
Posted
  • Author

Shes actually a leading researcher inthe field and concentrates her practivce on Celiac disease, thats her entire clinic.

I called the office and left a message and said I need an explanation as to why they would say that when I have been gluten-free since June. Because that would change the labs, thats what you want to happen and if its not noted properly then when I move, or have other problems, I won't be treated properly.

Soooooooooooo frustrated.

I know what it is I know prior to going gluten-free all my blood work was positive,...so why ....uggghhh

mouse Enthusiast
mouse
Posted

Maybe it is just a miscommunication. It is good that you have called and asked for an explanation. But, you might make another appt. with her to get some face to face clarification.

DingoGirl Enthusiast
DingoGirl
Posted
Makes no sense. POsitive blood work across the baord, went gluten free, now negative blood work, minus severe deficiencies and osteo. Sounds text book to me...

And the office said we know it happens all the time....so why would they not code it as such...because I'm not having the biopsy?? Soooooooooooo confused......

I mean positive blood work, and dietary response with proof in my teeth, deficiencies and osteo.....to me....if it walks like a ducks...and talks like a duck....it is a duck...

ARE THEY COMPLETE IDIOTS??? grrrrrrrrrrr......this is insane. of COURSE the levels go down with strict removal of gluten...DUH! My TGA was GREATER THAN 100 at time of diagnosis (and they stop measuring at 100). AT the four-month mark is was down to 17. I"ll have another checkup in a couple of months....and BTW my periods were almost non-events before.....very short and anemic. Within a couple of months they came back VERY strongly, and anemia is reversing - at time of dx my ferritin was 2, was up to 6 (still low but improving).

I would stay off gluten if I were you....

chgomom Enthusiast
chgomom
Posted
  • Author

I think maybe she forgot that I had that lab work in my file....that I had the all postive levels....

that my periods were non existent now clock work,....levels are down to "normal", no D.....but now we're left managing the deficiecies and osteo....

Someone suggested if I get noting with that message.....to go to a naturopath....I dunno about that though

I have celiac. Everyhting else is benign.....that blood work was sky high prior to going gluten free.....and now I have soooo many issues with vitamins and etc....ughhhhh

Gamecreature Rookie
Gamecreature
Posted
I think maybe she forgot that I had that lab work in my file....that I had the all postive levels....

that my periods were non existent now clock work,....levels are down to "normal", no D.....but now we're left managing the deficiecies and osteo....

That's possible. My GI has been very good so far and seems to really understand Celiac, but I have to keep reminding him that I no longer have a gall bladder.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    4. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.