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Antibody Levels

The Glutenator

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The Glutenator Contributor
The Glutenator
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

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sa1937 Community Regular
sa1937
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

I'm questioning the short length of time you've been gluten free to be already testing for antibodies and expecting them to drop if you had significant damage at diagnosis. That being said, I really don't know what is recommended although my gastro suggested being retested in 6 months to a year.

I'm interested to see what others have to say about this, too...I've only been gluten free since April 9 and have not yet been retested.

Frances03 Enthusiast
Frances03
Posted

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Gfresh404 Enthusiast
Gfresh404
Posted

I would not be worried - I believe it takes a lot longer than 6 weeks for your antibodies to go down.

Wait at least six months - then if they're still high, that's when you can freak out.

The Glutenator Contributor
The Glutenator
Posted
  • Author

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Sorry for the confusion, I have only had two tests. The first one for diagnosis, and now a second. The second test was after 6 weeks going gluten-free, but then I had two wait 2 and a half months for a follow up appointment (my scheduling issues, not the doctor's...but now that I feel so great no need to rush back to the appointments, haha).

Thanks for your feedback. He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

sb2178 Enthusiast
sb2178
Posted

A second biopsy after 4 months? that didn't leave you much time to heal. I'd be inclined to just get blood work done at 6 months and then, if there is no change, to consider a second biopsy at one year. (But I tend to wake up during such things and remember them as rather uncomfortable.) Especially since you feel good! If you still felt awful, that would be another matter.

ravenwoodglass Mentor
ravenwoodglass
Posted

He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

I would get antibodies rechecked at 6 months and then if they are still elevated it might be appropriate to rebiopsy in case you are someone who has 'silent' celiac to make sure that damage is being repaired. IMHO rechecking at this point is too soon.

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Roda Rising Star
Roda
Posted

I had my antibody levels rechecked at 6 months and then again a little over a year later. I did have a repeat EGD and biopsy this April (1 1/2 years since last one) but I had the test for other reasons and since he was there he rebiopsied the small bowel to check progress. I my opinion I wouldn't rescope this soon. Wait for your six month blood work and then go from there.

heatherjane Contributor
heatherjane
Posted

My antibody levels were tested finally at near normal levels after 15 months from initial diagnosis. Definitely give it more time...your doc is too hasty.

The Glutenator Contributor
The Glutenator
Posted
  • Author

Good to hear. I am actually going away for the next couple months and won't have the endo until I get back, so the second biopsy will be over 6 months after being gluten-free. It's already booked and I wasn't very affected by it last time, so mind as well keep the appointment. It is really great to hear that I don't need to get too worried yet.

Kim27 Contributor
Kim27
Posted

I agree with everybody else, too soon to worry yet! What blood test are you talking about? tTG? My tTG level was 168 at first... 5 gluten free weeks later my doctor retested it only because I had to get some other bloodwork done anyway and it had dropped to 65. She did however make a point to say it's not normal to retest that quickly and that she wants to test again around 6 months gluten-free to see if it has dropped closer to more normal ranges since 65 is still too high but my body definitely didn't have enough time yet! It seems REALLY soon to have another EGD...

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      Second chance

      By Jmartes71 · Posted

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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