Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mysterious me!

Kennyholtsie

Recommended Posts

Kennyholtsie Newbie
Kennyholtsie
Posted

Hi all, I'm not going to bore you with my history but even after diagnosis I continue with the same symptoms. 

For 4 years I have had swollen eye sockets, pain and pressure around eyes. Over the years i found that there is a relationship between food and my eyes. This is why I went to the GI and found out that I have celiac through DNA and Scope. Also low IGA which was covering up the celiac blood tests. 

Ive also been to hundreds of other docs over 4 years and had every test under the sun done. I'm very healthy!! (My primary calls me the million dollar man) ? Sorry health ins! 

Anyway, if I eat just about anything my eyes will hurt. Not my stomach or anything else. I get foggy headed, and then I have eye pain. It's literally all foods so eating has not been easy. If I stick to a very limited diet (meat, veggies) I tend to feel a bit better. There are certain foods that really set me off. Coffee, rice, corn, cheeses, all dairy, bananas, most OTC medicines etc, alcohol, sometimes potatoes and many more.  

I've been gluten-free for a year, and I continue to have these painful swollen eyes. 

Any ideas what could be going on with me? Please ask questions and I'll answer. 

Thanks!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board.  Could you be getting cross contamination somewhere? Sharing stuff like nut butters, jellies, mayo, butter etc can cross contaminate you. Whole unprocessed foods are the safest.  Eating in restaurants or in other folks homes can also be an issue as can simply kissing someone who eats gluten. Do you have your own toaster? Checked all meds script or OTC? Gluten can be sneaky. That said some problems can take quite awhile to ease. Do be sure to read the Newbie 101 thread at the top of the Coping section and feel free to ask any questions you need. I hope you get some relief soon.

Lorjenn22 Apprentice
Lorjenn22
Posted

for eye issue i think its your skin products or shampoos or soap. fir years i had itchy skin n rashes. turned out im allergic to sulfate. im not sure if that has gluton in it but i switched to aveno. once i used my moms shampoo bc i ran out n turn red lobster!! also make up or products or allegeons make my eye water all time! smtimes it’s something in air but i dont know what !!

ravenwoodglass Mentor
ravenwoodglass
Posted
6 hours ago, Lorjenn22 said:

for eye issue i think its your skin products or shampoos or soap. fir years i had itchy skin n rashes. turned out im allergic to sulfate. im not sure if that has gluton in it but i switched to aveno. once i used my moms shampoo bc i ran out n turn red lobster!! also make up or products or allegeons make my eye water all time! smtimes it’s something in air but i dont know what !!

That's a possibility but I would advise looking carefully at the ingredients on Aveno products as many contain oats. 

plumbago Experienced
plumbago
Posted
On 10/14/2017 at 9:07 AM, Kennyholtsie said:

Hi all, I'm not going to bore you with my history but even after diagnosis I continue with the same symptoms. 

For 4 years I have had swollen eye sockets, pain and pressure around eyes. Over the years i found that there is a relationship between food and my eyes. This is why I went to the GI and found out that I have celiac through DNA and Scope. Also low IGA which was covering up the celiac blood tests. 

Ive also been to hundreds of other docs over 4 years and had every test under the sun done. I'm very healthy!! (My primary calls me the million dollar man) ? Sorry health ins! 

Anyway, if I eat just about anything my eyes will hurt. Not my stomach or anything else. I get foggy headed, and then I have eye pain. It's literally all foods so eating has not been easy. If I stick to a very limited diet (meat, veggies) I tend to feel a bit better. There are certain foods that really set me off. Coffee, rice, corn, cheeses, all dairy, bananas, most OTC medicines etc, alcohol, sometimes potatoes and many more.  

I've been gluten-free for a year, and I continue to have these painful swollen eyes. 

Any ideas what could be going on with me? Please ask questions and I'll answer. 

Thanks!!

Hi,

When you went gluten free did any symptoms improve (and then return)? If they did improve, for how long?

Have you been to an ophthalmologist?

A quick google turned up the possibility of TMJ
"Inflammation and irritation caused by friction in the temporomandibular joint can irritate and cause dysfunction in the trigeminal nerve which in turn leads on to pain and discomfort in the eye socket."

Also, thyroid - but doubtful, as that's usually hyperthyroid, and you'd probably know beyond a shadow of a doubt if you were hyperthyroid.

And your blood glucose is ok, right?

From what you describe it sounds kind of like a congestion of sorts. Are you sure it’s not sinus-related?

Please keep checking back in.

Plumbago

Lisa1014 Newbie
Lisa1014
Posted

Hi there. I've had ongoing issues with my eyes for a few months now, including pain in my eye orbit, swelling over and under my eyes, dry, wrinkled and flaking under eye skin that comes and goes. I thought that I was allergic to mascara that I had just purchased; that seemed to be when my symptoms began.

I'm presently I'm thinking that I have blepharitis. I'm also wondering about Sjorgens syndrome. I have an appointment with my ophthalmologist in a few weeks (my GP told me to put vaseline around my eyes-thanks for nothing!).

I'm practicing good eyelid hygiene and have noticed an improvement in just a day! Maybe you can check into those?

Good luck to you!

cyclinglady Grand Master
cyclinglady
Posted

Consider Graves Disease.  My mother struggled with it.  She did not have all the classic symptoms of Graves, but she did end up with permanent eye damage (she sees double).  My cousin had it even more severe.  Besides eye muscle pain, she had the classic eye budge (Grave’s affects the muscles in the eye and/or other muscles in the body producing weakness).

I have have Rosacea, but it presented  as Ocular Rosacea and not on my face.  My Hashi’s first presented with thyroid enlargement.  I was never cold, lost hair or gained a pound.  My celiac disease presented as anemia with none of the classic GI issues.  What I am saying is that Autoimmune Issues can have various symptoms and are often systemic.  

There was a point where I was having thyroid swings.  When hyper my eye muscles hurt.  Scared me because my mom was pretty much forced to give up working.  So......

Do not mess with your eyes.  Get checked by an ophthalmologist.  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.