The primary reason to get 'diagnosed' for Celiac disease/disorder/gluten intolerance is the know whether you must follow an absolutely strict gluten-free diet. Also, a diagnosis tells your primary care doctor to watch for the health problems associated with Celiac. However, you can do this 'watching' for yourself through your doctors by becoming educated about Celiac disease. Be pro-active about your health.
If you go for a 'second opinion' through Kaiser, then you'd likely want to go to a gastroenterologist, not an endocrinologist. And most gastroenterologists are not really on top of the latest information on Celiac's and gluten syndromes. You might check and see if you can find a Kaiser doc that sees a lot of Celiac patients for the best help. Typically,gastroenterologist will do multiple tests ending with endoscopy biopsies that may or may not show villi damage depending on how long ago Celiac's/gluten intolerance was triggered. Remember, just having the genes doesn't make a person Celiac - it has to be triggered by X amount of gluten exposure.
The gut issues from Celiac's can have endocrinology impacts. Thyroid's T4 conversion to T3 occurs in both the liver and the intestine so if the intestine isn't working properly a lot of people find they are short of T3 even though they may have plenty of T4 (which is why T4/T3 combos or natural thyroid like Armour may work better for Celiac hypothyroid patients issues.
If you've decided you are a Celiac, one of the most useful books I've come across recently is "Recognizing Celiac Disease' which gives detailed information about the vitamin and mineral deficiencies Celiac's can experience. It's helpful to have a fundamental understanding of Celiac's to get the best use from the book. You can get an idea about the book from the author's web site at: recognizingceliacdisease.com
I had to go 'outside the system' to find my own answers. I finally used Dr. Fine's gene and fecal tests at Enterolab.com to get gene tested. I was right - I carry a double gene that associated with gluten intolerance and am also sensitive to casein. So a strict GFCF diet is what I follow. Dr. Fine's articles are worth reading, too. My regular MD would never have found that I was Celiac/gluten intolerant, because I'm atypical. I had to go the gene route to really find out.
As far as respiratory illness, it's a good idea to insist on getting a Vitamin D test. I have to stay in the upper 25% of the D lab range to avoid respiratory illnesses. When I was first tested I was way below range so don't assume you are fine. It takes several months to bring D levels up as it's not a quick fix.
Lastly, Doctor's aren't perfect. There's an abundance of studies stating that there's a significant connection between type 1 diabetes and Celiac's disease. There's evidence that Immunoglobulin A (IgA) deficiency is much more common among Celiac's, If you are also reacting to gluten, then it would seem like a reasonable probability that gluten isn't good for your particular health situation. My personal view was why should I wait until my villi are severely damaged just so the MD can go "yes, you should avoid gluten..."
My blood test was negative too, but they are not 100%. I removed gluten from my diet and what a huge difference!!! Just about 3 yrs now. And oh, it so hurts if I accidentially get gluten so I don't hold a lot of faith in that blood test.
When I was first diagnosed with Autoimmune issues I read online and researched Doctors in my community and found a Naturopath that was highly recommended to help me sort through everything from a different perspective and it was helpful.I continued to see my main stream doctors as well. I also checked out tons of books from the library and read tons. Getting the right information about you and your individual needs should be your primary focus. Keep looking and asking and seeking until you get what you need to feel better. Barb
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Even though you tested negative that does not mean that you don't have it because like someone said that test gives false negatives.
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The respiratory stuff may be because your gut is still not healed from the gluten (this impacts the immune system) and also I know you react to dairy some. That can cause both gut issues (immune) and respiratory problems also. I agree that other than natural type docs or chiropractors you are not going to get much assistance. You will better spend your time here and on the internet. I have learned way more online than from the doctors...
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Just a little friendly advice. You will get much more accurate information from doing your own studying and NOT relying on Dr.'s in the regular medical profession, sadly. I have grown tired of Dr's who can't give an accurate diagnosis, who think it must be in your head, and who simply don't know much about this problem. They seem to think if you don't have a typical result with testing, you don't have a problem. I have finally quit looking to them for confirmation of what I know to be true about my health. My reactions to gluten are horrific. I don't care if it is celiacs, allergy, or gluten intolerance. Keeping it completely out of my system has improved my health 100%! Make yourself happy and be content with your own knowledge of what is going on with your body. Who knows yourself better than you anyway?
Like I said, I don't really care about the Celiac diagnosis... I just want someone to talk to me about the IgA and IgG deficiency possibilities (without denying that they exsist) because I'm wondering if I've been sick with the respiratory stuff due to that.
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Well I read a post from DOTSLADY about how the testing isn't so accurate...unless you have total detruction of your intestinal villi. I wouldn't put too much stock in it. If you feel better GF what more is there?
I have even been feeling better on NO grains and following Paleo diet. Check it out...
And I agree Chiropractors are a good source of natural wisdom usually.
Does Kaiser allow Chiropractors? If you find one that is more "well center" centered often they focus on nutrition and finding the cause of the illness instead of covering it up like mainstream Dr's. The one I just started working with is similar to my ND, but there are some differences.
My Celiac test (taken in October 2010) came back negative... IgA was 5, IgG was 3. I was fine with not having a label, as I know what makes me sick (even though my primary care physician doesn't believe me). My question is, after reading in multiple sources that IgA deficiency (defined as less than or equal to 7) can cause negative results, am I IgA deficient? I asked my Endocrinologist (I'm also a type 1 diabetic) and his answer was (and I quote...): 'The test for celiac disease is done to exclude high gluten IgA and IgG antibodies. Since these antibodies are made specifically to gluten there is no such thing as too low a level and does not reflect the status of your immune system regarding the ability to fight colds/infections'. (FYI - I've had repeated upper respiratory infections since October, when I started figuring this whole thing out. 5 to be exact.)
His answer doesn't sound anything like what I've been reading. So I'm confused. My husband says I should ask for a second opinion, but I don't want him to refer me to another doctor that doesn't believe in this either. Should I ask to see a specialist of some sort? If so, what kind? My insurance (Kaiser) doesn't cover natural medicine providers, as far as I can tell, which is where I'd like to go right now. Should I just try to find some funds and visit someone outside the system? Any and all suggestions (and personal experience here) would be very helpful!
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