Jump to content

Follow Us:   Twitter Facebook Celiac.com Forum RSS      

Get email alerts  Subscribe to FREE Celiac.com email alerts
arrowShare this page:
Subscribe Today!

Celiac.com Sponsor:
Celiac.com Sponsor:


Member Since 10 Oct 2006
Offline Last Active Jan 04 2011 08:43 PM

Posts I've Made

In Topic: Enterolab Results

30 December 2010 - 06:51 AM

Where does one find out the different risk associations with the different alleles? I'd like to know what else I can look forward to in the future! I have also had several scary lung infections in the last 10 years and suffered from recurrent tonsilitis as a child. I suppose I can blame my alleles for that too :)

If the gluten free diet helps you, I hope it works out like it did for me. I used to have 2-4 lung infections a year. Ex-doctor never thought twice about it. But I have them no more – took me about a year to realize that the infections had gone missing!!! Frueden tag!!! Same with the sinus infections. My Pollen and mold allergies are much better, too. Was that really due to me maybe having “DQB1*0301”? I don't know yet.

Studying the biomedical factors of gluten sensitivity leads down many rabbit holes and time sinks. Don’t stress over it. There may be a “clearinghouse” information of DQ and other alleles, but I don’t know yet. I searched Celiac.com for "genetics" -- if there was any resource other than overviews of DQ2 and DQ8, I missed it. But this is new stuff [suggestion!]

If you know all you need to about your diet and run out of other things to do, you could search the internet for “DQB1*0301” with whatever symptom or condition you are wondering about. Be prepared for reading technical papers. That’s how I study. I see that others some others do, too. I think gluten sensitivity and geekiness travel together.

I weeks ago I looked at what Wikipedia has now about “HLA-DQ”. There is a list of alleles and links articles on the related serotypes., e.g., DQ6 and DQ7.

I liked the discussion on “Understanding DQ Haplotypes and DQ isoforms” on the "DQ2" wiki page, explaining wide ranges of severity of sensitivity.

If you want to read more technical materials and fewer commercial sites, search the internet for “gliadin” instead of “gluten”. But this can take up a lot of time and may raise false or premature worries. The main thing I got out of all the reading is confirmation of how non-intestinal symptoms can associate with gluten instead of taking someone’s word to the contrary.

In Topic: Enterolab Results

28 December 2010 - 10:42 PM

I have sinus and voice issues (going to the ENT next week) Sleepiness? Yes, but more on the level of fatigue. ... What is Provigil?

I must apologize, Iíve been geeking out on the DQ genetics since I recently learn how much more information there is now than 6 years ago. The various DQB1 alleles have many associations with autoimmune diseases.

DQB1*0301 associates with chronic fungal sinusitis and some other things. The Mayo clinic determined that most chronic sinusitis involves fungus sensitivity by way of the eosinophils. My son has a lot of runny noses and a lot of eosinophils so I call DQB1*0301 the snot-nosed kid gene.

My recurrent sinus and lung infections greatly improved on the GFD, but I only had temporary improvement on fatigue and daytime sleepiness. I've finally given in to Provigil for excessive daytime fatigue and sleepiness. DQB1*0301 also associates with excessive daytime fatigue and sleepiness (autoimmune narcolepsy). 100mg Provigil seems to help so far (2 weeks), it even seems to have stopped the morning headaches that had come back!

But enough of that, you have enough to think about about now with the new GFD and the malabsorption.

In Topic: Pain In Elbow Joint Area

28 December 2010 - 09:34 PM

I'm not sure if this is the right forum so please feel free to move it if it isn't.

Maybe? I'm probably not the best to say. Are you asking about the pain as a celiac/gluten symptom or as a non-related pain?

This might not be what you are feeling, but I had elbow pain in the form of cubital tunnel syndrome, typified by tingling in the pinky. It was treated as if it was Carpal Tunnel. I took the arms off of my office chair. I was told to expect repeated surgery eventually. I was treated for a few months, but the pain resolved 90% or better when I started the GFD. I discussed this with Dr. Fine years ago and he mentioned autoimmune inflammation of the tendons. It would flare up from time to time on the GFD and I wondered if it was an indicator of being "glutened", but in the end I think it associates more with a big carbohydrate load in the lower GI.

So, does anyone here get pain like in their elbows? Or like in that area? I'm wondering if it might be because I have reduction in muscle (a.k.a. padding), but I'm not sure why. Anyone else?

In Topic: Some Questions About Testing

28 December 2010 - 10:46 AM

I have certainly been one to wait by the mailbox for the test results. :)

You are fortunate to have a doctor who is looking into this. You have good, normal questions, but I wonder if it is all right to wait for the present tests to play out and you have copies of the results in hand and your doctorís conclusion and then see where you stand. If it is celiac disease, its not going anywhere the next few days. [This is the place where I remind myself to go play with the kids. :) ]

In Topic: Where Do I Go From Here?

28 December 2010 - 10:28 AM

"Sure - maybe someday you'll be diagnosed with an autoimmune disorder,

Sure, if you kept eating gluten. :rolleyes: I have read about and talked with doctors who were explicitly told in school to not waste time considering or studying Celiac Disease.

I began feeling like a loon!

I think many of us go through that. Iíve been through the bit where just mentioning Celiac Disease meant I was just a Hypochondriac in need of therapy. Of course, it doesnít help that gluten makes us crazy. :rolleyes:

Except I am not underweight - I am about 30 pounds overweight.

Don't worry about that, I say it is an old myth that Celiacs must be emaciated. The link below is to a prospective study of body mass index of celiacs (no real difference in BMI for Celias ):

Northern Ireland Study

I was always a small skinny guy but gained 40lbs the last two years before diagnosis.

Face Rash: Look up Malar rash. I had one of those once years after the GFD (once or twice years before). First thing out of docs mouth was Lupus, but I tested negative.

My guess is, that when you are gluten sensitive, the GFD lowers general autoimmune activity. (e.g., gliadin stimulates the dendritic cells)

Celiac.com Sponsors: