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Sjogren's
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30 posts in this topic

Test results:

ANA - positive

SSA, SSB, rheumatoid factor, and ESR all negative.

I have an appointment with rheumatologist in February.

I also talked to my naturopathic doctor - she has some other natural remedies to try to help with the inflammation as well. So, we'll see what happens next.. I will bring up the additional food allergies as well. We did do a IgG panel before this whole process started, and I have been avoiding all of the ones that came back high. But might be worth revisiting...

Thanks!

Well...that's interesting! I hope you still try the Restasis, even though your antibodies are negative. You may want to be tested again down the road to see if things have changed.

ANA can be elevated from Celiac so that might be the cause.

So you found a Rheumatologist?

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Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.

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Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.

Restasis needs a bit of time to kick in and work. It is used to suppress inflammation and we all know that can take longer than we like. I think it was at least 6 weeks before I noticed any difference but it usually takes a while and then you start to notice that your eyes feel better....it's not a hugely dramatic thing like going gluten-free and having the Big D stop! ;) Some people see no difference but others do. It's one of those things you have to try for awhile to see if it makes any difference.

Good luck with the Rheumy crapshoot! I always go in with some hope that this doctor will be different but I am usually disappointed. If you find a keeper, please let me know in case I need one down the road. I hate going in blind. :o Good luck with everything!

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I have a question regarding dry eyes, but will start with some background info...

I was diagnosed with Celiac in February after starting to see a Naturopathic Dr for signs of inflammation. I have suffered with seasonal allergies for at least 25 years, taking prescription drugs for them for almost 20 years, and getting allergy shots for the past 6 years - and still had allergy symptoms worse than most people (both in severity, and in duration). In the past 5-10 years, I have been having cornea erosions (which are the most painful thing I have ever endured). When I get them (even a small one), I am out of work for a full week. The cornea erosions have really changed my life - I will go to extreme measures to prevent getting anther one. Once it starts getting cold in the fall, I need to have a humidifier going in my bedroom (and bring one along if I travel anywhere). I use ointment in my eyes every night before going to sleep. I use Systane drops in my eyes frequently at work when the air gets dry. At one point, my eye doctor commented that some of the erosions seemed to be caused by inflammation in my eyes (during allergy season), and that if we could get that under control, we might be able to control the erosions as well. This inspired me to see if Naturopathic medicine might be able to help me since it seemed that my problems were systemic. The Naturopathic Dr is the one that made the Celiac diagnosis.

I have been gluten/dairy free since February and have noticed a big improvement in my allergies (though they are not completely gone yet). I am hoping that next year will be even better, since I will have had more time to heal. It is starting to get colder/drier, and I have noticed that my eyes have been really irritated lately. I was hoping that maybe I would not need the humidifier any more, but I was wrong. Last night I put the humidifier on, and my eyes are much happier today.

So, my question is about Sjogren's...

I have heard that there is a connection with Celiac and Sjogren's and have been wondering if there is a possibility that I have Sjogren's as well. When I asked my eye doctor, he said he didn't think the dryness was severe enough to be Sjogren's. When he told me this, I believed it. But, now that my eyes are as dry as ever, I am starting to wonder again. I know that it is possible that my body is probably still healing from the damage of Celiac, but I am curious what other people with Sjogren's have experienced, and if it is worth pursuing getting tested. I don't really know much about Sjogren's - I first saw it when I was researching the recurrent cornea erosions. When I was diagnosed with Celiac, I saw it again on the list of 'companion auto-immune diseases"...

Hi, I have Sjogren's and have a gluten intolerance, I also have many allergies and about 10 years ago (before either diagnosis) began have dry eyes along with bouts of dehydration. It took 8 years to diagnosis the Sjogren's and another year for the gluten-intolerance. I tried Restasis with some relief but after both diagnosis my eye doctor prescribed an allergy eye drop that really helps! I put in 2 drops each eye every evening and in the morning I can open my eyes easily, and I have begun wearing contacts again! Just an idea if you want to ask your eye doctor. laenie

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Thanks Laenie - I have been using Lotemax for over 2 years now. It is a steroid drop for allergies - he chose that one over some others because it can be used long term. However, I do have to go in every 6 months or so to make sure the pressure in my eyes is ok (a side-effect of this drop). When he gave me the Restasis, he was concerned that it might not do the trick when my allergies kick in - so I suspect I might be on a combination of drops for a while until I can get things under control. The Lotemax definitely helps, but by itself it just wasn't doing the trick :)

My naturopathic doc is having me try some different supplements to try to help so I can get off the steroid prescriptions (eye drops and nasal for allergies). I plan to start after the holidays...

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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