Confused!!!

[Raelynne]

Hi I am new here. I recently was diagnosed with celiac disease (serum, endoscopy and biopsy confirmed) but I have other issues going on. 

 

One: I have eye inflammation and have been dealing with this for a year. It's horrible. Saw two eye doctors who diagnosed me with allergic contact dermatitis of my eyelids. However none of the treatments worked. Through my own research I read about demodex mites and I started using tea tree shampoo/treatments which finally helped me make progress, but it's still terrible. Has anyone else dealt with eye issues like this? Could it be related somehow to celiac?

 

two: infectious disease panel results have me confused and concerned. These are all the abnormal ones I pulled from the labwork:

&Varicella-Zoster IgG ABS 

4.38 H (<=0.90 index)

 

&Measles IgG Antibodies 

275.00 H (<25.00 AU/mL)

&Mumps IgG Antibodies 

135.00 H (<9.00 AU/mL)

&Rubella IgG Antibodies 

1.89 H (<0.90 index)

 

&Hepatitis A Virus Total Antibodies 

>60 Abnormal (index) 

Hepatitis B Surface Antibodies 

36.91 H (<8.50 index)

 

&EBV EA-(D) Antibodies IgG

100.00 H (<9.00 U/mL)

&EBV EBNA-1 IgG

113.00 H (<18.00 U/mL)

&EBV VCA IgG 

175.00 H (<18.00 U/mL)

 

I am confused by those results and can't get a straight answer from the MD?

 

three: I tested positive for focal foceolar gastric metaplasia (on biopsy of duodenum) and my GI didn't say anything about that, I just read it in the results they printed for me. Anyone else have that too? 

 

Sorry for the long post. I am such a mess. I've been sick for so long with so many confusing things and never got a straight answer until I met my GI doc and was dx with celiac. He's the only doc I trust to really help me at the moment, but can only help with GI stuff. 

[Ennis-TX]

I am not a expert on the other diseases and issues that cropped up along with your high celiac levels, but celiac is a autoimmune disease. It can manifest itself with various symptoms that vary from person to person. The whole eye thing your mentioned could be related to celiac, some of us it effects, nerves, gut, brain, eyes, skin, and most people it effects the digestive tract in various ways. I know some people here have issues like eye twitching, and vision loss with gluten exposure. I personally have issues with loss of feeling in my hand and feet, brain fog, confusion, various digestive issues with it from vomiting, distention, and rotating D to C, and if I get enough of it I will lose full motor control and collapse to the floor unable to move from mostly the neck down.  Symptoms from gluten exposure can last weeks and even months for some people I normally have various gut issues ongoing for a week after exposure but can neurological and nerve issues that keep up for weeks to a month slowly stepping down. ONE  thought that stood out to me, you said it got better when your changed shampoo, is there gluten in your other shampoo and could it have been getting in your eyes?

Welcome to the forums I am sure someone here can give you much better information in relation to your case. I will give you some helpful links since your new to this.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

[Jmg]

5 hours ago, Raelynne said:

Hi I am new here. I recently was diagnosed with celiac disease (serum, endoscopy and biopsy confirmed) but I have other issues going on.  

Hello and welcome  

You've found a good site, hope you get the answers and any support you need here. 

5 hours ago, Raelynne said:

 I have eye inflammation and have been dealing with this for a year.  Could it be related somehow to celiac?

There doesn't seem to be much that celiac can't do but whether it's the cause of this or not is something a doctor would need to investigate. This forum is a great resource for finding others who have suspected similar:

https://www.celiac.com/gluten-free/search/?&q=eye inflammation

it looks like the condition is called blepharitis and that others reported success in removing gluten from their diet. Others found it worsened however and attributed it to other intolerances: Open Original Shared Link It's not uncommon for celiacs to develop other intolerances, or perhaps for those to become more apparent once the major antagnosit gluten is removed. So maybe/hopefully it will resolve on the diet, but don't let that stop you seeking further medical input or considering elimination diet to track any other food issues.

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two: infectious disease panel results have me confused and concerned.

You are right to be concerned and your physician should've addressed those concerns rather than brushing you off. You need to know what is causing high HEP result etc. Why not write them a short letter referencing the results and asking for their opinion on whether further testing or referral is appropriate? A letter is far more difficult to dismiss than a question during a consult. They will have to think carefully before answering and they may then decide to take another look.

Having said that as a celiac your immune system will have been stressed fighting gluten all this time. *I got shingles when I was 19 (comes from the zoster herpes virus you have in your system) as well as every bug going for twice as long as everyone else. Once I went gluten free the pattern changed considerably and my immune system now appears far sturdier. So maybe it will start to bring those levels down itself as you progress on the diet. 

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Sorry for the long post. I am such a mess. I've been sick for so long with so many confusing things and never got a straight answer until I met my GI doc and was dx with celiac. He's the only doc I trust to really help me at the moment, but can only help with GI stuff. 

You are amongst friends here and no apology required. It's good you've found a good GI doc, wrap him in cotton wool, they're worth their weight in gold

Best of luck,

 

Matt

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*full disclosure, I tested neg for celiac but have gluten problems nonetheless.

 

[RMJ]

Do you know why you were tested for the infectious disease antibodies?  Those don't seem like routine tests. Sometimes, for some of those, a high IgG antibody level is good meaning you are immune from vaccination or exposure.  Did they also measure IgM antibodies for any of those? 

I'd keep after the doctor who ordered the tests to explain it to you.

[squirmingitch]

Hi & welcome Raelynne!

I agree with the previous posts.

I was dx'd with blepharitis of the eyes prior to discovering celiac. I also, for years, had a lot of clear to whitish mucous accumulation in my eyes all the time. I don't recall how long after going gluten free, all that went away.

I want to mention one thing. My best friend (non celiac) had inflammation of her eyes & ended up being diagnosed with Rosacea although the ONLY place it presents is in her eyes. I never knew that before she was dx'd. Heck, I had no idea rosacea could affect the eyes at all. 

Here's some info. on rosacea. I'm going to copy & paste some interesting portions & also provide the link.

Demodex mites[Open Original Shared Link]

Studies of rosacea and Open Original Shared Link mites have revealed that some people with rosacea have increased numbers of the mite,^{Open Original Shared Link} especially those with Open Original Shared Link. On other occasions, Open Original Shared Link (commonly known as "mange") is a separate condition that may have "rosacea-like" appearances.^{Open Original Shared Link}

A 2007, National Rosacea Society-funded study, demonstrated that Open Original Shared Link mites may be a cause or exacerbating factor in rosacea.^{Open Original Shared Link} The researchers identified Open Original Shared Link as distinct bacteria associated with Demodex mites. When analyzing blood samples using a peripheral blood mononuclear cell proliferation assay, they discovered that B. oleronius stimulated an immune system response in 79 percent of 22 patients with subtype 2 (papulopustular) rosacea, compared with only 29 percent of 17 subjects without the disorder. They concluded that "[t]he immune response results in inflammation, as evident in the Open Original Shared Link (bumps) and Open Original Shared Link (pimples) of subtype 2 rosacea. This suggests that the B. oleroniusbacteria found in the mites could be responsible for the inflammation associated with the condition."^{Open Original Shared Link}

Intestinal bacteria[Open Original Shared Link]

Open Original Shared Link (SIBO) was demonstrated to have greater prevalence in rosacea patients and treating it with locally acting antibiotics led to rosacea lesion improvement in two studies. Conversely in rosacea patients who were SIBO negative, antibiotic therapy had no effect.^{Open Original Shared Link} The effectiveness of treating SIBO in rosacea patients may suggest that gut bacteria play a role in the pathogenesis of rosacea lesions.

Open Original Shared Link

Here's some info. on ocular rosacea:

Open Original Shared Link

 

[plumbago]

There are some key questions to ask before answering yours.

Have you had hep A? Have you had mumps, measles, or rubella? Have you had varicella (chicken pox)? If not, have been vaccinated against any of those diseases?

I just googled varicella-zoster IgG ABS (antibodies), and got this:
“The result should not be used alone to diagnose VZV infection and should be interpreted in the context of clinical presentation. A positive IgG result coupled with a negative IgM result indicates previous vaccination to or infection with VZV. These individuals are considered to have protective immunity to reinfection.”

Basically, you also need to know IgM levels not just IgG. (IgM or immunoglobulin M, is a basic antibody that is produced by B cells, a type of white blood cell. It is the first antibody to appear in response to initial exposure to an antigen.)

I need to know more about the reference range that the lab is using. I would expect to see a greater than sign (>) for antibodies and a less than sign for antigen, but I’m not an expert by any stretch. (Still, with an active infection, antibodies would be high in any case; basically is doc testing to see if you are infected now or if you are immune now?)

One resource I use for labwork is called Labsonline - google it. I recommend it.

Generally speaking, screening for antibodies is done to detect immunity to [fill in the blank.] In the case of rubella, for example, IgM tends to disappear after about 6 weeks. In other words, you need more information. You need the IgM levels.