Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Cmv Infection - Not Celiac
0

10 posts in this topic

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!

Edited by donwake
0

Share this post


Link to post
Share on other sites


Ads by Google:

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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

1

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined