Re: Continuing Problems on GF Diet

[Guest guest]

Be patient. Everything takes time. My 19-year old daughter has been on mesalamine (apriso) for almost a year, and her gut is healing slowly. Everyone is different, everything takes olympian patience and time.

Stick with Dr. Aron, get your 2nd opinion. Get a 3rd, if you want.

Your experience is the same as my daughter's. This is the healing curve. Your gut is inflamed and it needs time to heal, which seem like forever. I'm sure you're not getting any gluten, but your gut has been wired to attack everything. Two weeks on mesalamine will not change anything; but it will begin the healing process.

If you are wondering why he didn't treat you for SIBO, then just call the office and ask to speak to his assistant, Cherisse (sp?). She's lovely and will get you the answer. If you can get in to see Dr. Green - fantastic!! Taking control of your medical care is empowering; but have faith in Dr. Aron. He's helped a lot of people. His personality may not be for everyone; but he's the real deal as far as celiac care is concerned.

Melis B----- "blick48" <jsonnenblick@...> wrote: >

> > > I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.> Thanks.>

>

[Guest guest]

Two thoughts come to mind.Has the doctor looked at the small intestine with an endoscope? If the villi are severely damaged, that has a significant impact on digestion in a variety of ways. My wife didn't have any associated bacterial overgrowth, but I have heard of that before.On the other hand, my wife had a different and extreme presentation, specifically severe anemia because of the damaged villi. It took her almost two years of a GF diet and other strategies (blood transfusions, iron, ProCrit) to fully control the situation. Doing research we found that people varied substantially from a few months two over two years in the control of celiac symptoms, so I think you are well within the range of normal healing times. Other people on this list have

had a broad range of times for control of their CS symptoms. HogleFreelance academic librarianInstructor, online researchEmail: jjhogle@...Web: (under de- and re-construction) www.blueroom.comReality ain't what you think it isArt Graphics & Photographs[http://www.blueroom.com/realityaint.htm]From: blick48 <jsonnenblick@...> Sent: Tue, March 2, 2010 10:03:58 AMSubject: [ ] Continuing Problems on GF Diet

I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.

Thanks.

[Guest guest]

I'm sorry this has been so difficult. Having been to hell and back myself, I can empathize. I have found Dr. Aron to be extremely knowledgeable, and even when I have done extensive research and presented him with a variety of options other than what he has suggested, he has very patiently gone over them all with me, giving me the pluses and the minuses of each, and never forcing me to do anything I was uncomfortable with, even though a couple of times HE was right, and I should have done what he suggested earlier. At any rate, after years of suffering, I have no symptoms, my gut is completely healed (verified by Dr. Aron's endoscopy). My family is losing my husband's health insurance right now, and my first thought was that I couldn't stand to see anyone but Dr. Aron. I find him hilarious, thorough, and comforting when I have been an anxious wreck. My husband said that he appreciated all the time Dr. Aron spent with both of us after my colonoscopy/endoscopy explaining everything, and my husband who has never had a colonoscopy only wants to see Dr. Aron.Of course, I realize that everyone has a different experience and he may not be a good match for everyone.I will also tell you, though, that he presented at a Celiac meeting in Oakland a few years ago, and he was so clear in his presentation, up on the latest research, and so skilled answering detailed, complicated questions, that a number of people at the meeting said they wanted to drop their gastro docs and go to him!! I agree that it is fine to get a second and even third opinion, though. Keep going until you are satisfied.My Best,CarynOn Mar 2, 2010, at 10:03 AM, blick48 wrote:I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.Thanks.

[Guest guest]

When I was diagnosed two years ago, my symptoms were entirely non-GI -- I had joint/bone pain and neuropathy. After going on the gf diet, I suddenly experience GI symptoms -- specifically bloating & just feeling "weird" in my stomach. I can't explain these symptoms, since they didn't appear to be gluten related; but I do know that after a couple of months on the gf diet the symptoms disappeared and have not returned. Maybe I was having a reaction to dairy (or corn or soy or...), which a lot of people with celiac need to avoid for a while after diagnosis. Instead of avoiding it, I suppose I just plowed on through and just basically ignored the new GI symptoms. I don't recommend just ignoring the symptoms, I'm just conjecturing as to the etiology of my own... But I did want to put my two cents out there so you would know that others have these kinds of symptoms after going gf, too...

Good luck and I hope you feel better soon!

Tristan

-----Original Message-----

From: melbatavia@...

Sent: Tue, Mar 2, 2010 11:54 am

Subject: Re: [ ] Continuing Problems on GF Diet

Be patient. Everything takes time. My 19-year old daughter has been on mesalamine (apriso) for almost a year, and her gut is healing slowly. Everyone is different, everything takes olympian patience and time.

Stick with Dr. Aron, get your 2nd opinion. Get a 3rd, if you want.

Your experience is the same as my daughter's. This is the healing curve. Your gut is inflamed and it needs time to heal, which seem like forever. I'm sure you're not getting any gluten, but your gut has been wired to attack everything. Two weeks on mesalamine will not change anything; but it will begin the healing process.

If you are wondering why he didn't treat you for SIBO, then just call the office and ask to speak to his assistant, Cherisse (sp?). She's lovely and will get you the answer. If you can get in to see Dr. Green - fantastic!! Taking control of your medical care is empowering; but have faith in Dr. Aron. He's helped a lot of people. His personality may not be for everyone; but he's the real deal as far as celiac care is concerned.

Melis B

----- "blick48" <jsonnenblick > wrote:

>

> > > I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.

> Thanks.

>

>

[Guest guest]

I had some digestive issues last a couple years after I went gluten free, although different than the problems I had on gluten. Then I had a really bad flu last year with several days of high fever -- shortly after that I also needed antibiotics for an ear infection. After the fever and the antibiotics, my digestive symptoms cleared up completely, and since then I have been using a lot of pro-biotics to keep things in top shape. I had also had problems with eitehr cea or Sebherraic Dermititis on my face for several years, which (which it was was never confirmed, but both are due to bacteria) -- both of these cleared up at the same time and have never come back (knock on wood).

-LOn Tue, Mar 2, 2010 at 10:03 AM, blick48 <jsonnenblick@...> wrote:

 

I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.

Thanks.

[Guest guest]

Thank you all for your responses. This has been a long hellacious ride and I am

very impatient to be 100% better. It helps knowing there are others out there

with similar experiences. Tristan,....my issues sound just like yours. No GI

symptoms then boom, your GI tract turns upside down after going gluten free. I

know I have to be patient. The mesalamine seems to be working and as well as

fish oil and L-Glutamine. I do like Dr. Aron. He seems to be so caring and

compassionate and he gets it. I guess I still have a hard time trusting doctors

since I was misdiagnosed and ignored for so long after repeatedly telling them

something was wrong and being treated like an hysterical female. I had one Dr.

tell me that she had plenty of patients suffering even when there was nothing

wrong with them... So it's nice to hear confirmation from others that Dr. Aron

is the real deal.

Just heard from him about my latest blood test and things are moving in the

right direction. I guess I just needed reassurance from others that have been

through it.

Thanks for your support.

Judy

>

> I've recently been diagnosed with celiac. Atypical presentation of joint and

muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6

months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron

who says my GI tract is still inflamed with likely some small intestine

bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2

weeks, not too much relief. Everything seems to bother me, I can't pin point

anything dietary. I don't think I'm getting any gluten. Is this just the healing

curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts

regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the

SIBO. I'm tempted to see Gree in NY if there is no improvement in the next

few months. Any insight would be helpful.

> Thanks.

>

[Guest guest]

Reassurance is our group's middle name. We're here for you.MB----- "blick48" <jsonnenblick@...> wrote: > > > > Thank you all for your responses. This has been a long hellacious ride and I am very impatient to be 100% better. It helps knowing there are others out there with similar experiences. Tristan,....my issues sound just like yours. No GI symptoms then boom, your GI tract turns upside down after going gluten free. I know I have to be patient. The mesalamine seems to be working and as well as fish oil and L-Glutamine. I do like Dr. Aron. He seems to be so caring and compassionate and he gets it. I guess I still have a hard time trusting doctors since I was misdiagnosed and ignored for so long after repeatedly telling them something was wrong and being treated like an hysterical female. I had one Dr. tell me that she had plenty of patients suffering even when there was nothing wrong with them... So it's nice to hear confirmation from others that Dr. Aron is the real deal.> Just heard from him about my latest blood test and things are moving in the right direction. I guess I just needed reassurance from others that have been through it.> Thanks for your support.> Judy> > >> > I've recently been diagnosed with celiac. Atypical presentation of joint and muscle pain, not too many GI symptoms. Joint and muscle pain have disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I am seeing Dr. Aron who says my GI tract is still inflamed with likely some small intestine bacterial overgrowth. Put me on mesalamine. I've been on mesalmine for about 2 weeks, not too much relief. Everything seems to bother me, I can't pin point anything dietary. I don't think I'm getting any gluten. Is this just the healing curve. Anyone have similar issues. Any suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree in NY if there is no improvement in the next few months. Any insight would be helpful.> > Thanks.> >>

>

[Guest guest]

That would support the small bacteria overgrowth. I've been trying yogurt and

Kefir and will give that a try. I think the mesalimine while not an antibiotic

has antibacterial qualities so maybe that with the probiotics will help.

Thanks.

J

>

> >

> >

> > I've recently been diagnosed with celiac. Atypical presentation of joint

> > and muscle pain, not too many GI symptoms. Joint and muscle pain have

> > disappeared. 6 months GFree but have GI symptoms of bloating, gas, reflux. I

> > am seeing Dr. Aron who says my GI tract is still inflamed with likely some

> > small intestine bacterial overgrowth. Put me on mesalamine. I've been on

> > mesalmine for about 2 weeks, not too much relief. Everything seems to bother

> > me, I can't pin point anything dietary. I don't think I'm getting any

> > gluten. Is this just the healing curve. Anyone have similar issues. Any

> > suggestions? I Any opinions thoughts regarding Dr. Aron? I'm questioning why

> > he didn't put me on antibiotics for the SIBO. I'm tempted to see Gree

> > in NY if there is no improvement in the next few months. Any insight would

> > be helpful.

> > Thanks.

> >

> >

> >

>