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Nancym

By Nancym
in Related Issues & Disorders

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Nancym Enthusiast
Nancym
Posted

I just got a diagnosis of Anklosing Spondylitis and my rhuematologist mentioned he thought it was associated wtih leaky gut, which could be caused by celiac disease. I was so surprised because I didn't expect a "mainstream" doctor to acknowledge leaky gut syndrome. He says the drug sulfasalazine should help with that and my various joint pains.

I'm just really impressed with this guy!

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dlp252 Apprentice
dlp252
Posted

Wow, that's amazing!

Nancym Enthusiast
Nancym
Posted
  • Author

This is a must read for anyone with food intolerances and arthritis!

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jerseyangel Proficient
jerseyangel
Posted

That is impressive, Nancy--he sounds like a 'keeper'! :D

debmidge Rising Star
debmidge
Posted

My goodness!! There's still hope for the medical community!

teankerbell Apprentice
teankerbell
Posted

My Rheumatologist couldn't really specifically say that I have RA after my RA factor and inflammatory numbers started going down after several blood tests. But she said I have some sort of auto-immune problem for sure. And that was that. Couldn't really help me much more. But quite mysterous because why do I feel so bad and what is going on that is causing my blood tests to "kind of" point to RA, but not really.

But thanks to my step-daughter, Dani (who is on this site alot), got me to read Dangerous Grains and things started making sense.

I have been gluten-free for only 4 weeks now so I don't expect to see the symptoms go away for a while, but I am very hopeful. And my Internist has been supportive on my decision to go gluten-free based on the stool test as well as DH. He feels that test results are not always reliable and if you feel better going gluten-free, then you have your answer.

jerseyangel Proficient
jerseyangel
Posted

You're Dani's stepmon? Danikali? I didn't know that. Dani is so sweet--we've been trading notes lately on our rice problems! I agree that if you feel better gluten-free, then that is the way to go. None of the Celiac tests are perfect, and as a person who was sick for 20 years before being diagnosed, I do believe that this leaves us open to autoimmune problems. I have read several books on the subject, including Dr. Green's new one, and I think Dangerious Grains is the absolute best! Best of luck :)

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Nancym Enthusiast
Nancym
Posted
  • Author

My rhuemy is putting me on sulfasalazine which is an antibiotic and also helps with RA and ulcerative colitis and I think also crohn's disease. I suspect I have more going on with my intestines than just food intolerances because I am eating a very controlled, careful diet and still getting flare-ups.

Well, I really hope this works!

I did read it takes 1-3 months before it kicks in though.

teankerbell Apprentice
teankerbell
Posted
You're Dani's stepmon? Danikali? I didn't know that. Dani is so sweet--we've been trading notes lately on our rice problems! I agree that if you feel better gluten-free, then that is the way to go. None of the Celiac tests are perfect, and as a person who was sick for 20 years before being diagnosed, I do believe that this leaves us open to autoimmune problems. I have read several books on the subject, including Dr. Green's new one, and I think Dangerious Grains is the absolute best! Best of luck :)

Hi Patti,

What is the name of Dr, Green's newest book?

Yes, I am Dani s in DaniKali's step-mom. She has been really helpful with this whole gluten thing for me. I am no where as sick as she is with celiac disease. Right now we live about 1,000 miles away from each other but I hope she feels some sense of support from me on her difficult situation.

Good luck Patti! :-)

Laura

jerseyangel Proficient
jerseyangel
Posted

Hi Laura--The name of the book is--Celiac Disease--A Hidden Epidemic. It just came out, I believe, the first week or so of March. It's great that you're a part of the group--hope you are doing well!

teankerbell Apprentice
teankerbell
Posted
Hi Laura--The name of the book is--Celiac Disease--A Hidden Epidemic. It just came out, I believe, the first week or so of March. It's great that you're a part of the group--hope you are doing well!

Thank you Patti for the information and thank you for the support. The message board has been so helpful to me!

I think I will try to get the book, soon and pass it on to my family. My parents feel that since they are symptom free, there is no concern. I told them that one of them passed the gene to me and (dad has had polups in the colon, mom skin cancer, arthritis) could be conected to some of their issues. So they brushed it off and said at their next check up they will mention it to their doctor. I tried to educate them a little on the testing but they aren't listening or really seem to care much that I have it.

Laura

jerseyangel Proficient
jerseyangel
Posted

Unfortuantely, I got the same response from my family members. My sister, at least, told her daughters' ped. that their aunt was dx. with Celiac, but no one except my mom got tested. And even her doctor was not familiar with the correct panel of tests. She ended up going through her GI, but he did not give her the whole panel! She does not want to hear any more about it--as far as she's concerened, she dosen't have it, even though she has unexplained anemia, bruising, C, had 3 miscarriages, hair loss, and an autoimmune blood clotting disorder. The one test they did on her was neg. and she's sticking with it. Everybody else has no major symptoms, so they won't get tested either. Frusterating, but you can only say so much because they're all adults and you can't force them. :angry:

teankerbell Apprentice
teankerbell
Posted
Unfortuantely, I got the same response from my family members. My sister, at least, told her daughters' ped. that their aunt was dx. with Celiac, but no one except my mom got tested. And even her doctor was not familiar with the correct panel of tests. She ended up going through her GI, but he did not give her the whole panel! She does not want to hear any more about it--as far as she's concerened, she dosen't have it, even though she has unexplained anemia, bruising, C, had 3 miscarriages, hair loss, and an autoimmune blood clotting disorder. The one test they did on her was neg. and she's sticking with it. Everybody else has no major symptoms, so they won't get tested either. Frusterating, but you can only say so much because they're all adults and you can't force them. :angry:

Right, I feel I did my part to let them know and it is up to them now to decide what they want to do with the information. I can't wait till Easter to see how my mother will handle my food requirements. It will be the first major holiday for me. I have a contingency plan to bring my own stuff, if I find that my mom is getting too bent out of shape with the menu. Which she tends to get anyway. My mother-in-law is a different story - she is more accomodating than my mother.

But, my mother and I are like oil and water - on completely different planets on the majority of subjects and issues. (I have spent years trying to resolve) So I don't expect much support, empathy or much of anything.

I ordered the book from Amazon.

Thank you again!

jerseyangel Proficient
jerseyangel
Posted

I'll bet we could have some interesting discussions about our mothers <_< . Anyway, I do understand. Glad you got the book! Enjoy the rest of the weekend :)

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