A Disease That Accompanies Celiac

[natalieb]

I am a 39 year old woman who had been diagnosed with celiac disease well over a year ago. Please listen to this.... I have been reading and posting to this forum for quite some time and occasionally ran across postings that sounded like some of the symptoms that I was experiencing after being gluten-free. For example, a year after being gluten-free, I was developing mouth sores, my tongue would hurt and look almost swollen at times, my energy level was at a new low, my antibody tests while seeming to come down in some areas, were spiking in others, also my nose seemed as if it had a clothespin on it, and my eyes would hurt sometimes, esp when I was in the sun. I finally went to see a rhumatologist here in Pgh who drew blood and I came back with a positive ana, rhum. factor, elevated sed rate, and elev immunaglobulin levels. During that time, I also became stiff in my thumbs which scared me to no end. Its just like it happened in one day. Well, the doctors that I saw at the top facility in Pgh told me "We think, it might be rhum. arth, but not sure, the puzzle just doesn't fit". After getting nowhere, I went to the cleveland clinic and was diagnosed with sjogrens syndrome. Sjogrens coincidentally is often found in celiac patients like myself and perhaps a few of you out there who I have read your post. Now that I have a proper diagnosis I am taking plaquenil, an immunosuppressor and feel like a new person. Of course I am and will remain gluten-free. The problems with my eyes and dryness in my nose has not decreased even with the medication, but the extreme fatigue and some of the gut pains are gone. Please please, if you have any of the above symptoms, please get checked, but be careful with the doctor that you choose. The rhum. here told me that I didn't have sjogrens due to a salivary test and an ssa and ssb blood test coming back negative. In fact, these same doctors told me that I needed to get on with my life and just take more tylenol for the pain, despite the fact that I suffer from duodenitis and gastris,(by the way commonly seen in sjogrens patients), So be careful with the doctor you choose. As for me, I will trust a doctor who fellowed at the cleveland clinic and has been there forever, thus, he knows that not all diseases, "fit a perfect puzzle". Just something for you out there to know.

[ponita]

Wow! I read your post then went to google to research what you were talking about. How do you feel about this dx? What an interesting story. I think you are truly a testament that a person has to keep looking for reasons why we feel the way we do.

Where is the cleveland clinic? Did you see a rhum doc or immunlogist? I'm asking because I have a freind who has some of these symptoms.

I'll be thinking of you.

Melissa

[red345]

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[Guest barbara3675]

OHMYGOSH-----------I just clicked on this subject and it is pretty interesting. I have fibromyalgia and now am being tested through Enterolab for gluten and lactose plus the gene testing too. My fibro has settled from my shoulders to my fingers and that is the only place it hurts. Do you make any sense of this or any connection to what you are talking about? My regular doctor doesn't get ANY connection at all and did a blood test for gluten which came back negative.....I am not sure if the blood test he did was even the right one. I am just sure this is all connected somehow. Barbara

[red345]

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[deb]

red345,

Just thought I would let you know that Helicobacter pylori is not a virus. It is a bacterium. You can read all about it by going to the following site [url=http://www.helico.com] If it were a virius an antibiotic would not kill it. I'm not trying to be rude here but you should know that a virius is not removed from the body with antibiotics.

[red345]

Yeah, got that one Deb. My mistake, thanks. My intention was to highlight the infection possibility. I know the difference, but could careless about proper terminology at this point. Remember, I'm an amateur~.

[Guest momof3]

natalieb, I read you post and was wondering if you would be so kind to read mine.

(exterme weakness/fainting spells)?

The one thing that got my attn was the feeling in your nose. I have tried to explain this feeling before to my family. When the spell begins, it feels like my nose is very stuffy.Swollen feeling. My thumbs have stiffined up. They postured according to the paramedic.

Give me your thoughts.

momof3

[ncs913]

So I am recently diagnosed with Celiac's...and I have hypothyroidism...and I have psoriasis...my mother has hyperthyroidism, sjogren's, fibromyalgia, peripheral neuropathy AND lupus...she has had ongoing stomach problems for years and I am having her go back to her GI to get tested for Celiac's. Interesting, huh? Talk about having autoimmune diseases run in the family!

[Guest barbara3675]

Interesting that this subject has come around again. In addition to the fibro, I have extreme dryness inside my nose all the time, but I thought it is due to the dryness of the weather where I live. I don't have a cold as there are no other symptoms and I feel fine otherwise. When I posted before on this particular thread I was waiting for Enterolab results and they came back saying that I had a gluten intolerance and carried the gene...also a cow's milk intolerance. I have ben gluten-free/cf now for 6 months and things seem to have straightened out, but not my nose, so I think it must be the dry air. However, my fibro is much more under control than before going gluten-free. I will keep in mind the dx of the first person posting on this thread for future consideration, though.

Barbara