New, question on daughter

[hawkeye53 0]

Hi,

I am new to this, for genetics have HLA DQ 2.2 also have rheumatoid arthritis and sjogren syndrome for autoimmune was positive for IGG part of the celiac panel but have IGA deficiency so IGA part negative had upper and lower GI done recently as rheumatologist was deciding on next biologic to try and wanted to rule out GI issues including crohns, IBS and celiac.  Unfortunately GI doc did not have me stop/or hold the prednisone was on to control RA symptoms and only took 1 biopsy instead of as I've now discovered minimum of 6 it was negative.  My rheumatologist recommended to trial gluten free diet to see if helped with inflammation especially with the autoimmune issues I have, as well as significant hip and low back pain.  I have only been gluten free a couple of weeks, but it has already made a difference in inflammation.  My question is that we had our oldest and youngest tested as were getting blood drawn for allergy testing anyhow, the panel only included the IGA portion of the panel and the oldest tested with IGA deficiency like I have.  Her doc is not interested in drawing the IGG portion of the panel, but would refer to Peds GI.  Would you recommend to go for consult or should try and get IGG or genetic testing first?  She has always from young age had GI issues we attributed to more lactose intolerance.  Any ideas?

Thanks

[CherylS 16]

Hello,

Welcome.

Does your pediatrician know a lot about Celiac and autoimmune conditions?  Perhaps find a good pediatric GI doctor in your area who knows about these conditions.  If you have no idea how to find one, I suggest you go to your local children's hospital and see who they have on staff there.  I work at a children's hospital and we have specialty clinics and I notice they are more up to date because we do research and are always actively working at quality improvement with evidence based practice.  It's also nice because if they refer you to another clinic all of your child's care is in the same building, among doctors who know each other.

Related to your RA, has gluten free helped your joint pain?  I worry that I have RA if I don't have celiac, I've had joint pain in the middle joint of both middle fingers for over a year.  I've been doing a lot of research and I did see there is a link between gluten and RA.  My dad had RA and I believe some form of gluten intolerance or celiac disease, he had many of the same symptoms I am experiencing.  My dad had a tough time with his RA, I remember him getting gold injections and I think he had a really bad reaction to methotrexate.  He didn't take good care of himself and this was several years ago so I just tell myself if I have RA it doesn't have to run the same course my dad's did.

[cyclinglady 1,663]

My new insurance and provider will not even allow my GP/Internist to even order a complete celiac panel.  I must go to my GI to do it.   Just the nature of saving costs.....I guess (this did not happen with my old provider as our old GP ordered the complete panel based on the way I was tested)

Take Cheryl's advice and find a GI who knows or specializes in celiac disease.  I made sure my GI was knowledgeable by calling to check.  At the least take that referral, arm yourself with celiac disease research from reputable sources (like PUBMED) and ask for the complete panel.  

I am sorry that you were not diagnosed properly (why do docs not follow their association/organization recommendations?)  Glad you are feeling better on the gluten-free diet!