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Posted 5/31/2007 2:33 PM (GMT 0)
Hi all,  I haven't been around in a while--just kind of lurking.  I met with my GI last week, and he gave me the results of the celiac panel I had done.  They are inconclusive.  Evidently, I am IgA deficient, so the other two tests in the panel are absolutely useless.  The bad news is that he's going to follow up with some biopsies (I have an EGD scheduled in a couple of weeks); but the good news is that IgA deficiency is strongly associated with celiac disease (among other AI diseases like lupus) so I may be close to at least one definitive dx.  And it's something I can control completely with diet alone.  Just curious--how many of you are IgA deficient, as it is also closely associated with RA and SLE)?

Elcamino

Posted 5/31/2007 3:04 PM (GMT 0)
I have no clue no one has tested those levels in me. Seems pointless really. When my hands are swollen and red and hot and you can see and feel the swelling in the joints all my blood work is normal even CRP and SED. So I figure why bother anymore except the occassional CBC and metabolic panel to make sure nothing new crops up.
Posted 5/31/2007 3:32 PM (GMT 0)

Redrose, these are not tests that are normally done on people for RA or SLE.  I guess the only reason they would be done would be to test for celiac--the overall IgA is done as a control to make sure that you are actually producing IgA (which is my case I'm not).  The only reason I ask if you've had it done is because many people with SLE and/or RA have undiagnosed celiac.  And celiac can cause arthritis type symptoms, sometimes in lieu of any GI symptoms.  I agree--lab tests only go so far, and they're actually short-sighted in many respects.

El

Posted 5/31/2007 7:37 PM (GMT 0)

Yep - I have been tested for that by my old GI when he was trying to determine if I had Celiac along with the lovely Crohn's.  He did so many in depth tests trying to determine what felt like EVERYTHING.  Thankfully no celiac, but just Gluten Intolerance, Lupus and Crohn's.

My level was deficient also.  I have definitely felt much better with NO Gluten (i.e. wheat and it's not so lovely derivitives)  And what is even more interesting is that my daughter who has severe Eczema has tested allergic to Wheat, rye, gluten, and dairy - which are all big AI triggers.  We have seen a HUGE improvement in her symptoms since we put her on a Gluten Free, Corn Free and Dairy diet.  So I would not be surprised that she isn't deficient too, especially since I believe it tends to run in families and also in European decent - which my hubby is. 

Your endoscopy with biopsy will be the best diagnosis - but I am one that still feels (after much research) that anyone that has any type of AI Disease should try going Gluten free for a few months and see how they feel after about 6 weeks.  Just my 2 cents.

HTH


Posted 6/1/2007 12:29 AM (GMT 0)
Hi Elcamino, I have Celiac (gluten sensitivity), been dx since Sept 2003. I hope your EGD goes well but remember the "spot" the doctor chooses to biopsy may not be where your villa are damaged. The one TRUE test is trying the gluten free diet for a couple of weeks not unless you have to have a doctor's dx. If you show an improvement then you should eliminate gluten from your diet for the rest of your life.

I had an endoscopy, blood tests, etc and everything was "normal" except some patchy inflammation which wasn't enough for my GI doc to dx me. So after more than a year of enduring test after test (colonoscopy, CT scan, upper GI, gastric emptying scan, losing 40lbs, etc I took matters into my own hand and found a private lab that does stool panel test, which is more sensitive and accurate than blood test and was designed my a doctor with Celiac. My daughter and I were both tested and both were positive, started the GF diet and I could tell a difference within 3 days, my abdominal pain was gone! I continued to have GI probs but later found out it was from Lupus.

I hope you get some answers soon! Take care and let us know how your tests go.
Posted 6/3/2007 12:20 AM (GMT 0)
Thanks for sharing Stacie. I understand the biopsies are location sensitive, and it pretty much depends on my doctors skill and experience. I am prepared to take matters into my own hands if the biopsies prove negative. I am the type of person, though, that needs to have some sort of evidence that I actually have celiac. Perhaps I can ask you what lab you used? Would you be willing to email me the name?

I have cut down on my gluten intake, but I haven't cut it out altogether. And, truthfully, I am very lactose intolerant as well, and I still have lactose in my diet. So it's sometimes difficult to tell whether it is lactose or gluten, or the combination of the two, that are causing the pain and cramping. I am sure, however, that it is something I'm consuming--GI doctor wants to call it IBS.

Elcamino
Posted 6/3/2007 1:27 AM (GMT 0)
You are welcome. I know a lot of people think the biopsies are the gold standard and if your labs and biopsy are negative then you don't have gluten sensitivity and that's just not the case, it goes misdiagnosed each and every day and most of the time as IBS. They say 1 in 133 Americans have it. My GI doc tried to blame my problems on IBS too but it just didn't add up, he wanted me to take an Anti-D which didn't help at all. They think it's so rare in the US but it's not.

The lab I used was www.enterolab.com the tests are a little pricey, I used the cheapest (just testing for gluten) and then ended up getting the Malabsorption test too per the doctor's recommendation. Usually when one is gluten sensitive dairy becomes a problem too but usually after being gluten free for awhile and allowing things to heal, we can slowly introduce dairy back into our diets.

I hope you find out what is causing all of your GI problems, I know what you are going through and it's not fun! Feel free to ask more questions.
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