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Wait, What? Can A Doctor Suggest Celiac Base On This?

Looking for answers

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Looking for answers Contributor
Looking for answers
Posted

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)

Endomysial Antibody (IGA) - negative

Immuoglobulin A 381 (81-463)

Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)

Endomysial Antibody (IGA) - negative

Immuoglobulin A 381 (81-463)

Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.

Thanks!

Immuoglobulin A 381 (81-463)

This is your total IGA. That is in normal ranges which means if your original tests at diagnosis showed an elevated IGA in the celiac tests then yes that would be diagnostic. That the numbers have gone down to normal levels would show that you are doing well on the diet.

Looking for answers Contributor
Looking for answers
Posted
  • Author

Ravenwood, thank you, you are always a great source of knowledge here. The problem is I was never given any blood tests that I know of - just the biopsy, which was negative. However, I had already been gluten free months before it was performed.

Now my doctor sees the test scores I posted and says it suggests celiac. I don't get it!

Skylark Collaborator
Skylark
Posted

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

ravenwoodglass Mentor
ravenwoodglass
Posted

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

That was posted in this thread

Skylark Collaborator
Skylark
Posted

Looking for Answers (gee, you need a better handle) said she was reposting because the results she put in the other thread were wrong. The 381 number was apparently total IgA. We still don't have the TTG IgG number her doctor is talking about.

Looking for answers Contributor
Looking for answers
Posted
  • Author

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

They didn't test it since I'm not IGA deficient, which is why his diagnosis doesn't make sense. :unsure:

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Skylark Collaborator
Skylark
Posted

They didn't test it since I'm not IGA deficient, which is why his diagnosis doesn't make sense. :unsure:

No wonder you're confused. I am too! Can you call the office and ask?

Looking for answers Contributor
Looking for answers
Posted
  • Author

I left a message for my doctor, so I guess I'll have to wait and see how he came to this conclusion. I was just thinking I must be overlooking something and thought you guys may see something I'm not. I'm glad I'm not the only one confused!!!

Looking for answers Contributor
Looking for answers
Posted
  • Author

Okay, so I challenged my doctor's findings, and got this email this morning:

I looked at the results again, and I am clearer now on the findings. The testing we just did does not confirm celiac disease. The IgA that was in the 300 range is your total IgA. There are a small number of people who do not make IgA (which is associated with the gut) and if so, then the IgG test is done to confirm their likelihood of having the condition. So, the overall results are normal. Either way, if you feel better on a gluten free diet, that is a better way to go than based on these test results. I have attached something that I found helpful to interpret the results. - SW

And, then I emailed him back and said this makes sense based on the information I received from my very knowlegable friends on this board. I told him I often wonder what my results would be like if I were eating gluten for a month before these tests, and here's what he said back:

The tests took more effort to interpret. I do think they may look different if you were challenging your body with gluten, but definitely not worth the ill effects

Skylark Collaborator
Skylark
Posted

Total IgA has nothing to do with celiac antibodies. It's a measure of whether your immune system produces an appropriate amount of IgA overall, and therefore whether your body is capable of making celiac antibodies. In the case of IgA deficiency, the celiac antibodies are IgG, and require a different test to detect. The celiac antibodies are a small fraction of all the different antibodies your immune system is producing so gluten wouldn't affect your total IgA.

If you don't have any celiac antibodies in your blood, you're doing fine on the diet. As your doctor says, it's not worth challenging yourself with gluten. You might make yourself very sick and still come up negative on the celiac bloodwork anyway.

nora-n Rookie
nora-n
Posted

yes, the total IgA is not a celiac test.

I have seen abstracts on www.pubmed.com where they put diagnosed celiac children back on gluten (something they used to do before....) and it took from 6 weeks to several years for all to relapse, but relapse they did. Another one said that most relapsed after six months. So it might take some while.

I did a gluten challenge, and the effects were dramatic, firstly the biopsy was negative since I was biopsied after five weeks and no place in the literature I can see someone was positive after five weeks, but afterwards I lost 20 kg and I had to gradually double my thyroxine doseage afterwards despite being totally gluten-free, and then I had to reduce it back to nornal. The ferritin dropped too and has now jumped higher than ever, to 100 now. The doctors told me they have proven that I cannot possibly be celiac. (because of the negative biopsy, and the negative ttg test before going back on gluten.

BS.

bottom line: I can see that the gluten challenge caused lots of damage that took a while to go into effect, I lost 20 kg and had to increase thyroxine doseage for exmple. That lasted up to a year.

My fatigue did not resolve until after seven months off gluten after this endoscopy at the five week mark. I went gluten-free again after the endoscopy.

But, here in Europe lots of patients go back on gluten to get a diagnosis and endure the symptoms. I think most of them do that.

nora

Looking for answers Contributor
Looking for answers
Posted
  • Author

Thank you. I've ultimately decided not to do the challenge. Although I don't have symptoms, I've already been diagnosed with Sjogren's and have an under active thyroid, both problems have not progressed since going gluten-free. I'm too afraid to put my body through the challenge and risk having these flare up again...or worse, coming down with yet another autoimmune disorder.

Thanks to everyone for their responses...so many nice, helpful people here.

nora-n Rookie
nora-n
Posted

I see.

The argument about the risk of getting more autoimmune illnessess is quite weighty.

ravenwoodglass Mentor
ravenwoodglass
Posted

"Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways."

I don't know how I missed this when you first posted but I did. If you have been gluten free for 5 years there is no way without a lengthy challenge that your doctor can tell you whether you are celiac or not. Your doctor doesn't know much about celiac IMHO. The choice to do a long challenge is yours and since you know gluten has negative effects on your system I think you are wise to not go with one. Gluten 'sensitive' genes can be just as bad as 'celiac' associated genes and in my opinion they are just using different terms for the same thing. It seems that the main difference, to me anyway, are the systems that are most severely effected.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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