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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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)


113.00 H (<18.00 U/mL)


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. 

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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.




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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: https://patient.info/forums/discuss/coeliac-disease-and-eyelid-problems-124197 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. :)


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. 


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 :P

Best of luck,




















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


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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.

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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[edit]

Studies of rosacea and Demodex mites have revealed that some people with rosacea have increased numbers of the mite,[10] especially those with steroid-induced rosacea. On other occasions, demodicidosis (commonly known as "mange") is a separate condition that may have "rosacea-like" appearances.[13]

A 2007, National Rosacea Society-funded study, demonstrated that Demodex folliculorum mites may be a cause or exacerbating factor in rosacea.[14] The researchers identified Bacillus oleronius 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 papules (bumps) and pustules (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."[14]

Intestinal bacteria[edit]

Small intestinal bacterial overgrowth (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.[15] The effectiveness of treating SIBO in rosacea patients may suggest that gut bacteria play a role in the pathogenesis of rosacea lesions.


Here's some info. on ocular rosacea:



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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.

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    • Hi Johno,  fellow brit here. Crappy uk medical experience is par for the course unfortunately where this is concerned, so don't expect too much help from that sphere. Although with a positive diagnosis you should be eligible for dietician advice and monitoring of nutrient levels.  First, 4 month in is still early days. If you have cracked the diet and are not suffering cross contamination (v easily done) then you still have at least 2 and maybe 8 months of healing to come. So it's little early yet to be thinking that your celiac isn't responding to he diet.  1. Sleep issues. You don't mention what these are, but yes, celiac is definitely linked to sleep disorders. In fact it's linked with just about everything due to the way it impacts the body. Almost all systems can be affected. You may also find if the sleep issues are neurological in origin that they will be the last to go on the diet. I find neuro symptoms are the first symptom and last to go. Note also that although Gastrointestinal is commonly percieved as the major celiac presenting symptom, this isn't the case. So your not alone in not having major tummy issues.  It's not caused by mentality but it sure as hell affects it.  2. How long have you got? I tested negative so I'm in the ncgs category and some won't even accept that my condition exists. Even understanding of celiac is still developing. Research is ongoing as is levels of incidence. It's up 4 times since the 1950s so something is going on, better testing is perhaps revealing more. you have positive diagnosis, so you have good evidence to keep you strict on the diet. Eat as well as you can. Try to keep gluten free processed foods to  minimum  and eat fresh whole foods where possible. Treat this first 6 months as a one off healing period and help your body as much as possible. Take some good quality supplements, regardless of what the tests are saying. B complex, magnesium and a multivitamin are a good safety net if nothing else.  Read the newbie thread on this site and double check your kitchen etc for possible cross contamination sources. Could be seasoning, shared butter etc. You need to develop a sense of vigilance about this whilst staying on the right side of paranoia! finally, a warm welcome to a good site  
    • This disease is like a chameleon and seems to change symptoms on people and everyone is a bit different, heck some have no symptoms til it almost kills them with secondary issues like cancer, lymphoma, rupturing the intestines etc.
      I did not have ht classic D but constipation, I also had a bunch of other signs that I had grown into and considered normal. My big thing was neurological side of it. I had gluten ataxia where it attacked my brain and nervous system compounded by b vitamin deficiency, I had learned about the magnesium deficiency months earlier and was supplementing for that part of it. Anyway my health was getting bad, tired, random gut pains, brain looping on the same thought over and over driving me mad, bouts of anger and rage. I was running a bucket list before they got it diagnosed.
      Wish it was done earlier my immune system developed other issues like corn allergies, bunch of intolerance then years later learned I had also developed Ulcerative Colitis.

      There are some mental aspects to it, one part is the effects of vitamin deficiency like the b-vitamins, can be very detrimental to you mental health. Various others have cumulative effects or require others nutrients to work right. SO you have to find your balance and supplement til you heal, or sometimes for life. 

      There is also odd fight or flight responses I have noticed from me and others, your body starts to associate gluten and certain foods with discomfort, once off them starting to smell them or thing they might have contaminated your food brings out a panic like fight or flight as you subconsciously attribute that smell, thought, food, etc. with pain and discomfort.

      This disease is really not well understood, contradicitve....hell it is the only disease where you have to poison yourself to the point of causing major damage for them to learn you have it.....like "Here eat this poison so we can see if it makes you sick, but you have to be really sick for us to know it is this poison that makes you sick as it only effects some people"
    • I just quoted a little part but really much of your experiences could be mine. I won't bore you with it all, but chest pains came from 19, herniated disk came at 21, followed by 20 years of sciatic back pain. Depression at or about the same time. Brain fog little later. There was lots more, primarily neurological. Internally I expected to die in my 30s or maybe reach 40.  Nothing shifted any of it until I changed my diet and inadvertently reduced my gluten consumption. I went back on gluten for testing, confident I'd found my cause only to test negative. I did keep a diary however and that helped me and my consultant decide that gluten was off the menu for life.  Couple of things which may be helpful. There is more than one blood test. You may find that one of the others works for you. I never got them all and wonder sometimes if I would have tested positive on another one. You can post your results here if you would like some help in interpreting them. you mentions feeling relief when you ate less gluten. Are you sure you were eating it up to the test? Removing it may have altered the results. Finally, once testing is complete, go properly gluten free even if you tested negative on scope and blood. For some people, they test negative but still react. That could be you and give how closely some of my symptoms match to yours it may be the case. best of luck, you will find this site full of support and useful info. You are not alone in this. matt  
    • Morning guys.  So long story short. Lost 10 kg back late last year. Stress related I believe. ( I Understand this is a big factor with celiacs) Tested. Found anti bodies in my blood. Doctor states potential Celiacs. Have endoscopy. Doctor who takes procedure doubts I have it. Move to London. Move Doctor appointment. Here nothing from Doctors. Fast Forward from December (endoscopy) to July. Ring up doctos asking what my result were as I hadnt heard anything (While eating gluten) Get told "oh, you have celiacs"...........Ridicolous that I wasnt contacted. But anyway thats not the issue.   Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time. I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively.  There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.   1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality. 2) Thoughts on the contradictive studies/opinions of this disease?    
    • Getting a celiac disease diagnosis is shocking.  Expect to go through all the stages of grief.  Your best defense is to learn how to read labels, avoid cross contamination and consider eating as few processed foods for a few weeks.  It may speed healing (wish someone would have advised me to do so).  You might keep a food journal because celiacs tend to have leaky guts (this is a real thing) causing food intolerances that often resolve with healing.  Lactose intolerance is probably the most common.  You just have to experiment.   The bottom line is that soon you will feel so much better!  Just be patient.  It took a while for you to get sick and it will take time to recover.  😄 If you need to vent, ask a product question, or whatever, we are here to help!  
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