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Is It Possible?

Tamito

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Tamito Newbie
Tamito
Posted

Hello everyone!

I am new here and I have been trying to figure out whether I have celiac so I would appreciate your help and opinions.

I was diagnosed with celiac when I was a baby (14 months old) after having the typical syptoms (diarrhea, bloated stomach, extreme weght loss, etc.). I was so skinny that I couldn't even walk and the doctors thought it might be fatal. I was put on a gluten-free diet with tremendous improvement and after 6 months I was able to eat regular food with no indication of being sick. I was then tested every 6 months for the next 5 years and all test results were good. Since the age of 7, until now (I am 25 years old) I haven't even thought about celiac until very recently when my doctior sggested it. As far as I can remember, I have never had the typical celiac symptoms. My weight is normal, no diarhhea, no bloating. My doctor wanted me tested only because of my medical history, not because I have symptoms. She told me that if I had it when I was baby, then I have always had it even though there have not been any symptoms.

I am relatively familiar with the disease, but I wanted to ask your opinion about whether having celiac is likely in my case. I had the tests done last week but I am still waiting for the results. I should also mention that I have had headaches about twice a week for the past 2 years and there is a possibility that I might have problems with my thyroid because I have had a couple of people mention that it is slightly swollen. I am not sure whether this is related.

Anyway, what are your thoughts on this situation? Is it possible that I have always had celiac even though I have not had any symptoms and I have been in very good health for the past 20 years.

Thanks so much for your help!

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lizard00 Enthusiast
lizard00
Posted

Welcome! This site is a great source of information!

She told me that if I had it when I was baby, then I have always had it even though there have not been any symptoms.

She is absolutely right! It's an autoimmune disease, and it stays with you.

I am relatively familiar with the disease, but I wanted to ask your opinion about whether having celiac is likely in my case. I had the tests done last week but I am still waiting for the results. I should also mention that I have had headaches about twice a week for the past 2 years and there is a possibility that I might have problems with my thyroid because I have had a couple of people mention that it is slightly swollen. I am not sure whether this is related.

I had headaches daily for a year and a half. They were gone within a week. And thyroid problems are extremely commong among Celiacs.

Anyway, what are your thoughts on this situation? Is it possible that I have always had celiac even though I have not had any symptoms and I have been in very good health for the past 20 years.

Thanks so much for your help!

YES!

leadmeastray88 Contributor
leadmeastray88
Posted

Hi Tamito,

The previous poster is right. Celiac is an autoimmune disease and if you were diagnosed years ago, then yes, you still have it. And if you think about it, you DO have symptoms: thyroid, headaches...those are all typical of Celiac.

You can't outgrow Celiac. Just because you are not 'feeling' any gastro related symptoms does not mean you aren't doing damage. If you continue to eat regular food, you are putting yourself at risk for many other autoimmune diseases and thyroid problems, which you already have. You don't want to add diabetes, cancer, etc. to the mix!

There are many Celiacs who are "silent" before diagnosis, that is they don't experience any symptoms.

If you need reassuring, I highly suggest you re-do the testing for peace of mind. Only after that should you go on a life-long gluten free diet.

I feel for you , and I hope you find peace of mind soon! Welcome to the forum!!

-Kim

Green Eyes Rookie
Green Eyes
Posted

Hi Tamito,

I can only chime in with everyone else. I was a silent celiac and was floored with my diagnosis. Although I didn't have outward symptoms, I still had major damage to my villi and small intestine.

The good news is: being on a strict gluten free diet begins the healing process for a healthy life. Because I didn't have issues of sickness, I have had to focus on being healthy. Even though I don't feel sick now, the situation will only get worse left untreated.

Best wishes on your new journey,

Jennifer

TracyB Apprentice
TracyB
Posted
Hi Tamito,

I can only chime in with everyone else. I was a silent celiac and was floored with my diagnosis. Although I didn't have outward symptoms, I still had major damage to my villi and small intestine.

The good news is: being on a strict gluten free diet begins the healing process for a healthy life. Because I didn't have issues of sickness, I have had to focus on being healthy. Even though I don't feel sick now, the situation will only get worse left untreated.

Best wishes on your new journey,

Jennifer

A question for you Jennifer - just curious really...When celiac is silent, how is it that people find out they have it? What prompted tests to check for celiac? Family history perhaps??

Thanks!

TracyB

Tamito Newbie
Tamito
Posted
  • Author

Thank you all very much for your responses and kind words. I guess I'll just have to wait for the results now and take it from there.

Best of luck to everyone!

Tanya

ShayFL Enthusiast
ShayFL
Posted

Tracy...often "Silent Celiac" is dx as a result of the patient going in for something else (Diabetes type 1, lymphoma, etc.) As these diseases are very closely associated with Celiac, an astute Doctor will test for Celiac. This is how it is found. The patient might not have had ANY of the typical symptoms of Celiac....hence "silent"...but the disease manifests in one of the other disorders.

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mftnchn Explorer
mftnchn
Posted

Tanya, just one thought. You might find out exactly how the diagnosis was made when you were young. Just in case there was a wrong diagnosis at the time. I think it is good to go through the process of blood test and biopsy to double check.

Tim-n-VA Contributor
Tim-n-VA
Posted
A question for you Jennifer - just curious really...When celiac is silent, how is it that people find out they have it? What prompted tests to check for celiac? Family history perhaps??

Thanks!

TracyB

I'm not Jennifer but I'll give another perspective:

During routine blood work my primary care doctor noticed that my liver function test were fluctuating. After ultrasounds showed signs of cirrhosis a GI referral lead to a screening panel of blood tests to eliminate things that could cause similar issues. Celiac was one of the tests.

If I'd had a history of even moderate alcohol usage it might have been missed. In retrospect I seem to have had episodes of nausea after eating large quantities of bread (pancake breakfasts, etc.).

ShayFL Enthusiast
ShayFL
Posted

Thank goodness they did Tim!!

Tamito Newbie
Tamito
Posted
  • Author

So...my test results came back today and my doctor said that the tests for celiac were negative and normal for thyroid. I don't have the exact values because she only left a voicemail. I'm not sure what to think now...should I perform the tests again or should I ask for biopsy? Or maybe I should leave it at that...

I would really appreciate your advice.

Thanks!

Tanya

nora-n Rookie
nora-n
Posted

What tests were done, and what were the results?

We have seen here that for example only the IGA, IGG and IGM total tests were run. Those are just general tests, not celiac tests. We have seen that only hte endomysium test was run. The antigliadin and tissue transglutaminase tetss should have been done, together with the total IgA. Sometimes onely the antigliadin IgG test shows up positive (even though teh total IgA is fine), or the ttg IgG. Really all those tests should have been done.

Thyroid testin--I could write pages on that.

To sum it up, a normal TSH is very close to 1, and the ft3 and ft4 should be around mid-range or higher to be normal, and no antibodies at all. Four tests, not just TSH, should be done. Even a TSH above 2 is abnormal.

nora

Tamito Newbie
Tamito
Posted
  • Author

Nora, thanks for the reply. I will request copies of the lab results and I will be able to give more information next week.

Thank you all!

Tanya

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      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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