mcc0523

I already have a GI doctor, but I don't like her very much. Can anyone recommend a good doctor in the Knoxville, TN area?

Thanks!

I wish I could tell you... I'm in the same boat myself right now. My last GI doctor dx'ed me with Barrett's esophagus 10 months ago, and refused to check me for celiac when I asked, sticking with her IBS diagnosis. The IBS pamphlet in her office basically included a line stating that patients who have IBS might think they have other things and requested to be over tested.

I finally have found a neurologist I like and am even impressed with his knowledge. At my next appointment, I'm going to ask him if he can refer a good GI doc.

Like the header for the title says, my test results came back with a normal tTC IgA and a slightly elevated tTC IgG. As my labwork says, I have "none detected" niacin, almost no Vitamin D, and I'm on the "low normal" ranges of the other vitamins I was tested for. Even with a little over a week of going gluten free, the nausea that has been a constant in my life for... a really, really long time (at least 15 years) is not nearly as severe. I've been able to forgo anti-emetics a couple mornings, actually, when I would have taken it if I had still been eating gluten (I suspect). D hasn't been so bad... things have been loose, but not explosive (except the morning after I ate something without reading a label... which is when the nausea came back).

So.... I trust others who live with these diseases than I do doctors who only read about them. I haven't heard from my doc about these results, actually... They were drawn a month ago, and were expected to be in after two weeks. I called yesterday and demanded they be faxed to me. I don't know if or when I would have been notified. I am supposed to get another test and see this doctor again, but after this, I'm not sure if I want to. I have been reading more and more about the effects of B3 deficiency, and it's not pretty. The same with Vitamin D. It is a miracle that I only have very, very minor skin involvement going on right now (pellegra and DH look very similar.... perhaps a connection?), and I don't have full blown Pellagra (although I'm not so sure that I don't have delirium right now. ).

Sigh... I keep hearing snippets of the Hippocratic Oath, not so much "Do no harm", though that if you follow that, then providing prevention should be no question, because prevention of a disease is far superior than a cure for a disease (or something like that).

When I was undiagnosed, I ended up in mental hospitals 12 different times. The majority of the hospitalizations were after a gluten binge (cookies, crackers, bread... any commercial wheat based product). My two suicide attempts were after eating pretty much nothing but wheat the week or two preceding.

I've been gluten free for a week now. The past few months, I have decreased my consumption of it in my diet, had it perhaps 2 times a week (for one meal). Depression symptoms started to lift, just slightly. This past week the symptoms have lifted even more... at least until night before last when I got glutened. I woke up and nearly cried at the Hallmark commercial, and my thoughts have been a bit dark. From what little improvement I have seen from even imperfectly going gluten free the past few months, I'm really excited about how my symptoms will improve from cutting it out completely. My joint pain is... not an 8 now. Perhaps just a 7, but it being down to a 7, again, makes me hopeful that I'll find at least SOME relief. I know I can't change my collagen, but if forgoing gluten will keep it from degrading as quickly, and lessen the inflammation that has made the joint pain become so unbearable at times these past few years, then I will be thrilled. By the second day of completely gluten-free, the nausea I feel from the moment I wake up until I go to bed has almost completely gone away. Some of my social anxiety was more to do with, "Where are all the bathrooms, and how quickly can I get to the closest one if I have V or D?" and not wanting to embarrass myself because of symptoms I couldn't control. I hope the more those go away, the more at ease I'll feel in public.

I am VERY malnourished. According to my last blood panel, there are no detectable levels of Niacin in my body, and my vitamin D is 8. My doctor didn't run any more vitamin levels at that time, but I wouldn't be surprised if the untested ones aren't abnormally low as well. Low B vitamins (and all of them, actually) can cause symptoms of depression, anxiety, and other neurological symptoms, too.

Like many of the illnesses in my signature, I diagnosed myself with celiac first. Actually, I'm not "official" right now, but a high IgG from recent lab work (I only got it after I called a month later and made them fax it to me... ) and symptom relief from avoiding gluten pretty much speaks for itself. After many years of "IBS", depression, nerve pain, fatigue, insomnia (alternated with days that I just can't get out of bed), joint pain, a hiatal hernia, and many other symptoms (I swear, I could have written the majority of posts in this thread), I have recently decided to go gluten free.

I was first diagnosed with the POTS, and then 9 months later, EDS. I have met too many people with EDS on various message boards and forums who have had issues with either celiac or gluten-intolerance to ignore the fact that I should at least investigate it. I've since read some statistics that there is a higher incidence of celiac with those who also have EDS. Also, right around the first time I started suspecting that gluten might be exacerbating my underlying health conditions, at least two of my friends started asking how much gluten I was eating, and suggested that I give it at least a month.

In addition to Ehlers-danlos syndrome, perhaps you should look into autonomic dysfunction (or dysautonomia). My particular brand is something called Postural Orthostatic Tachycardia Syndrome. Postprandal fluctuations in bp and pulse are not uncommon. Dysautonomia is common with us who have EDS (I can't remember exact percentages right now, but MUCH higher than a *normal* population), and can cause inability to regulate body temperature, pulse, blood pressure... even digestion. Anything that is controlled by the autonomic nervous system can be affected by this. Any underlying malabsorption issues that comes along with celiac/gluten-intolerance can fuel symptoms even more.

I am so new to this that I cannot even say that it "sounds like" celiac. I just wanted to let you know that I completely understand that you wish you have celiac.

As you can tell by my signature, I have many health issues that have been diagnosed. The majority of them (especially the POTS, EDS, and osteoporosis) were just diagnosed within this past year. Before then, I was just psychosomatic, or even worse, making up my symptoms completely. While, with the EDS, there is nothing I can do to reverse it (or even treat it so much, except manage symptoms), being able to point to a specific reason why I feel so terrible all of the time is a huge relief by itself. If, by going gluten-free, I can even better manage my symptoms (especially joint pain), then I will be thrilled beyond belief.

I attend a Byzantine Catholic (or Unitiate) church, where the Divine Liturgy of St. Basil is prayed every Sunday. There are two other individuals in the parish who do not consume gluten, so Father has a separate chalice, with ONLY the blood in it, that is consecrated along side everything else. When they are in line to receive, Father trades out the "traditional" chalice for the gluten-free one, and is very, very careful to ensure the spoon, which is used to serve the Eucharist, is wiped very thoroughly afterwards. I don't think these people have celiac disease, but have issues with consuming gluten.