Cmv Infection - Not Celiac

[donwake]

I wanted to thank everyone on this forum, everyone's posts were really helpful as I looked into possible Celiac diagnosis. I also referred my sister here because she has Celiac.

Before I get into my own experience, I'd like to suggest that others who post on here while investigating possible Celiac, please follow up with your results even if it's not Celiac. I think that can be quite helpful for those of us looking for answers to their pain.

So here's my story, perhaps not common, but it is cathartic for me to relate it, and I think it teaches something. I had three doctors visits, two ER visits, and two hospital stays.

My symptoms were abdominal discomfort/cramping, diarrhea, extreme fatigue, and strong facial flushing accompanied by migraine-like headaches. I also had body aches, chills and sweats, especially at night. I lost about 25 pounds in the two weeks of the worst symptoms because I simply couldn't eat. I was nauseous without vomiting, and I never tested a fever above 100. My symtoms were especially bad about 20-30 minutes after eating.

Although I had tested negative on the iga bloodtest, I still suspected Celiac because my sister had an iga deficiency that had also caused her to test negative prior to the endoscopy confirming her Celiac. So I was very eager for the doctors to follow through with Celiac testing.

In the end, I am really glad the doctors went through all the testing they did. After chest x-rays, abdomen CT scan, ultrasound of my liver/pancreas/gallbladder, colonoscopy and upper endoscopy, MRI of brain, and about 25 vials of blood, the GI docs finally discovered in the small intestine biopsy a viral infection (CMV) had gotten to my small intestines and liver and kidneys. One lab result that really complicated the diagnosis was I had elevated liver enzyme levels.

Apparently acute CMV infecton is pretty rare in patients unless they are immune-compromised with HIV or cancer, but it can happen. I was put on antivirals on an IV for a few days, and since my symptoms had started to go away, the infectious disease doctors let me go home and continue with oral meds.

The list of suspected illnesses as I was tested ranged from pancreatitis to gallbladder disease to acute Hepatitis to various cancers to Celiac or other auto-immune diseases.Thankfully it turned out to be nothing chronic, although the doctors said my infection could have been life-threatening.

The biggest lesson I learned was patience. I was convinced I had Celiac, as my sympotoms seemed to be intensified forms of what I had already been feeling for a few years. But there are a lot of possible conditions out there and it can be very involved trying to diagnose, especially if someone has more than one thing going on to complicate the symptoms.

In fact, my doctor also thinks I have a gluten intolerance because the gluten-free diet has helped a lot with the diarrhea and facial flushing that I had been having for so long.

I hope this helps someone. Thanks again for all the great information provided in this forum!

[Celiac Mindwarp]

It is good to hear how people get on, whether it is celiac or not.

Great that you got to the bottom of it, sounds like some determined doctors there.

Thanks for the post, good luck

[gatita]

Wow, you are the only other adult I have "met" who had CMV!

I got it about ten years ago, in my 40s, and learned as you did that it's very rare in adults who are not immune-compromised. (Apparently most U.S. people get it without symptoms when they are little kids in preschool or kindergarten.)

I too, was tested for everything under the sun (except celiac, funny) before my doc figured it out. I also had the high liver enzymes — so much so that they thought I had hepatitis!

I did not know, though, that CMV affects the small intestines like that. Funny, I was diagnosed back then by an expert infectious disease specialist, who is the same one who diagnosed my gluten intolerance this year.

You make a good point, too... I think these days I tend to think every symptom anybody has points to celiac, when of course there is a world of diseases out there. Glad yours had a fairly swift resolution.

[tarnalberry]

I'm glad they got to the bottom of it!

And thank you for sharing your story! It's an important lesson for everyone.

[donwake]

Wow, you are the only other adult I have "met" who had CMV!

I got it about ten years ago, in my 40s, and learned as you did that it's very rare in adults who are not immune-compromised. (Apparently most U.S. people get it without symptoms when they are little kids in preschool or kindergarten.)

I too, was tested for everything under the sun (except celiac, funny) before my doc figured it out. I also had the high liver enzymes — so much so that they thought I had hepatitis!

I did not know, though, that CMV affects the small intestines like that. Funny, I was diagnosed back then by an expert infectious disease specialist, who is the same one who diagnosed my gluten intolerance this year.

You make a good point, too... I think these days I tend to think every symptom anybody has points to celiac, when of course there is a world of diseases out there. Glad yours had a fairly swift resolution.

Hi Gatita,

Your experience sounds just like mine, I'm also in my 40s. The ER docs thought I had acute hepatitis for sure. I'm glad you recovered well.

It's strangely comforting to hear about others with shared illness experiences. Thanks for your comments.

Good luck to everyone trying to figure out!

[frieze]

Hmmm, perhaps being celiac would count as being immunocompromised???

[donwake]

Hmmm, perhaps being celiac would count as being immunocompromised???

Yes I agree Celiac would definitely count, although I should have been more explicit, the endoscopy and biopsy showed no evidence of Celiac for me. The doctors ran a bunch of blood panels for auto-immune diseases such as Celiac, but they're still straining their brains to figure out what, if anything, was the underlying cause of the CMV infection.

I am simply counting myself very fortunate at my recovery. Believe it or not, I made it home literally just in time to see my 11-month-old daughter (our first) take some stabs at her first unsupported steps (inevitably followed by face-plant after face-plant into the mat, lol).

[Gemini]

Hmmm, perhaps being celiac would count as being immunocompromised???

Celiac Disease does not make one immuno-compromised. It's just the opposite. We have an overactive immune system.

To the OP....if your doctor thinks you may be gluten intolerant, are you following the gluten-free diet also? Will that be something you stay with? I am happy you found a solution to your symptoms and hope you feel better and stay that way soon!

[donwake]

Celiac Disease does not make one immuno-compromised. It's just the opposite. We have an overactive immune system.

To the OP....if your doctor thinks you may be gluten intolerant, are you following the gluten-free diet also? Will that be something you stay with? I am happy you found a solution to your symptoms and hope you feel better and stay that way soon!

Thanks for the clarification: Celiac is auto-immune but not immune-compromising, good to know. I hate to spread misinformation by using the wrong terms.

I have been following a gluten-free diet for a couple weeks now, and my "movements" and facial flushing have been better than they've been in years.

I have no clue whether I definitely have a gluten allergy/intolerance, but I plan to stick with the diet because I feel better on it.

I may have something else going on too, but the doctors haven't pin-pointed anything. I really sympathize with the doctors because diagnoses are so hard with multiple things going on.

Plus I realized I am terrible at describing my symptoms. I had two different kinds of pain in my abdomen, neither of which were paricularly sharp, but I could describe them no better than "cramping" and "related to breathing" (both way too vague).

[Gemini]

Thanks for the clarification: Celiac is auto-immune but not immune-compromising, good to know. I hate to spread misinformation by using the wrong terms.

I have been following a gluten-free diet for a couple weeks now, and my "movements" and facial flushing have been better than they've been in years.

I have no clue whether I definitely have a gluten allergy/intolerance, but I plan to stick with the diet because I feel better on it.

I may have something else going on too, but the doctors haven't pin-pointed anything. I really sympathize with the doctors because diagnoses are so hard with multiple things going on.

Plus I realized I am terrible at describing my symptoms. I had two different kinds of pain in my abdomen, neither of which were paricularly sharp, but I could describe them no better than "cramping" and "related to breathing" (both way too vague).

If you feel much better gluten free, that it's noticeable, then you may have found an answer there. You may be gluten sensitive vs. full blown Celiac but if you feel better eating gluten free, then stick with it. You also have a Celiac sister and that means you may have some kind of problem with gluten. All my siblings have assoicated conditions or symptoms but no one listens to me so they continue with problems.

It is hard to describe symptoms, sometimes. Not always easy to find the right words to describe discomfort or pain. I am just happy that you have made some progress in figuring things out! GI distress can really disrupt one's life but I don't need to tell you that!

[MmmBread]

I'm not so sure the OP is not celiac. 

Why?  because doctors are for the most part idiots.  I hate saying that but its true.  Did they actually run the Gliadin test on you?   Because I  have spoken to at least 5 doctors who think if you're negative for Tissue Transglutimase, then you are NOT a celiac.  When I told them I was positive for Gliadin antibodies, they either didn't know what that was, or mistakenly told me I'm still not Celiac. 

Then they go off about this nonsense that the only TRUE way to be diagnosed as celiac is to have a biopsy.  As if the positive bloodwork is 100% irrelevant, and only people with diagnosed damage to the gut can be called Celiac.   The numerous levels of misinformation and misunderstanding in the above nonsense is exactly why i have stopped bothering to use doctors as a source of information.  They are wrong more than they are right and that is a danger and detriment to public health. 

You can have no damage to your gut in a biopsy, and be negative on Tissue Transglutimase, and positive on Gliadin and be Celiac.  So if they didn't check Gliadin then you don't know for sure that you're not a celiac.  Nothing is cut and dry like doctors like to pretend it is.  Especially not this condition.

I too got "Celiac" after an adult-acquired bout of CMV.  There is no reason why CMV couldn't be the cause of all your problems and your subsequent celiac symptoms.  CMV incorporates itself into the cells of the gut, and causes ongoing low-grade inflammation for the life of the carrier.  Every time you run yourself down, it can reactivate, or become more influential in your symptoms.  Infect new cells.  Its not like an on-off switch, where you take your CMV meds and now its off.  Its a herpesvirus and the one thing herpesviruses do best is reactivate, and remain active in a "sub-clinical" (no symptoms) fashion causing endless problems.

I am convinced that my new CMV infection is behind all my problems, but only in the sense that it has resolved and now is all over my gut, causing ongoing issues.  One of them being legit celiac.  In the end, if you have to stop eating gluten, whats the difference between celiac or not?   I don't see the point of even drawing a distinction.  Get the gliadin test though.  Try doing a gluten challenge for a month and then doing it. 

[kismetjess]

I know this is an old thread but its worth posting. I stumbled on this because my doctor ran some labs TTG IGG which suggest Celiac. Celiac would be just another diagnosis in my long list of labels. I have had an acute CMV infection for over a year, and none of the specialists I see seem to be concerned because "there is nothing to do for it". In addition to this – I was recently diagnosed with a mast cell disorder. I am convinced there is something bigger going on with this CMV infection. I've had flow cytometry done which caught an abnormal T-Cell population, but a bone marrow biopsy looked normal. Why have I had this thing for a year? What is the damage it is doing to my body? Is there a correlation to Celiac? 

For those above that had acute CMV – what was the outcome?