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 Apprentice
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 Apprentice
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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.