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Should I See A Specialist?


francelajoie

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francelajoie Explorer

I need advice,

I was diagnosed gluten intolorent and possible Celiac by my family doctor. I just found out that there is a Celiac center less than an hour from here. Should I go?

I've been gluten free since last July and I feel great. Would a diagnosis change anything?


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jerseyangel Proficient
I need advice,

I was diagnosed gluten intolorent and possible Celiac by my family doctor. I just found out that there is a Celiac center less than an hour from here. Should I go?

I've been gluten free since last July and I feel great. Would a diagnosis change anything?

Nope--if you feel great on the diet, there's nothing that a specialist can do that being gluten-free can't. The diet is the only treatment for Celiac. Glad to hear you're doing so well :)

Ursa Major Collaborator

I agree, it would just be a waste of time and money. Obviously you know what you're doing, you feel great, no need to bother.

mmaccartney Explorer

I've been exploring this myself. I am pursuing a formal diagnosis from an MD. Why? I believe that Celiac disease (and my associated arthritis) qualify as a disability under the americans with disabilities act. A formal dx would give me protection under that act.

Now, if you are looking for more answers for your own peace of mind, I'll give you the advice my rhuemotologist (whos mother is a celiac) gave me:

"Why do you want further testing, or further diagnosis? You already know what is wrong with you, you changed your diet and your getting better...what more do you need to know?? Stay of gluten, and get healthy!"

I still wanted more answers, so I ended up at Enterolab. The results there confirmed everything, and surprised me with the fact that I have a celiac gene (DQ2) and a gluten intolerance gene(DQ3). The casien intolerance surprised me as well....it wasn't the cheapest testing at $390 BUT my insurance is paying for it!!!!!!!!

the gene testing results were important to me as I have two sons. Having two genes tells me that there is a 100% chance that they recieved at least one of the genes from me. Thus they are presdisposed to celiac, or gluten intolerance, or both (like me). This has spurred me to take action to have them further tested as they may be reacting with no visible symptoms!!!!

francelajoie Explorer

Thanks guys...I think I will just continue the diet. At least I know the center is there if I ever need to go.

Eugene Newbie
I still wanted more answers, so I ended up at Enterolab. The results there confirmed everything, and surprised me with the fact that I have a celiac gene (DQ2) and a gluten intolerance gene(DQ3). The casien intolerance surprised me as well....it wasn't the cheapest testing at $390 BUT my insurance is paying for it!!!!!!!!

Michael,

What is Enterolab anf how does one get tested?

TIA, Eugene

Jnkmnky Collaborator

A dx isn't going to make your life better. There are things you will be UNable to do if you have a dx of Celiac disease. Stuff like Joining the military, becoming a priest, getting good health insurance. You can face obstacles with a dx of celiac disease. Best to keep it quiet, imo. There really is no benefit that I've encountered with this dx... sometimes you hear that you can itemize the food costs on your taxes, but that's such a load of bunk. Who's done it? There's nothing to gain with this dx OTHER than your HEALTH!


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      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
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    • Scott Adams
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