Reiter's Syndrome

[mm&j]

I need some help. I have been gluten-free for over a year. My severe bone pain and fatigue is not subsiding. It is torture to get through the day. My husband wants me to get my 'Joy" back. I can't even comprehend what joy is anymore I am in so much pain and depression. I am suspecting that there are other autoimmune diseases in play along with the Celiac. I have been to a new Dr. who seems eager to "figure me out" but I just was reasearching it myself and AS or Reiter's Syndrome sounded like a lot of my symptoms like spine "fusion", plantar faciitis and just about every other symptom listed. I know I shouldn't "self-diagnose" but I have been suffering for over 2 years and the Celiac diagnoses and subsequent gluten-free diet hasn't significantly helped my bone, joint, muscle and fatique problems OR my worsening depression.

I would appreciate anything related to the subject especially if there is some HOPE involved.

THANKS SO MUCH,

Susie (MM&J)

[mamaw]

Hello

I'm from Pa too? Near Pittsburgh- where are you from?

Have you checked your thyroid? Fibromyglia?, CFS.Ms? Are you celiac or gluten intolerant? Doctor dx'd or self dx'd?

I have several autoimmune disorders besides celiac. I have days where I move fairly well & days where I can barely move at all. Are you taking Vit D? B-12?

Just a few suggestions to check into if you haven't already.........are you positive you are not getting hidden gluten from something? Depression also is another thing to factor in!

blessigns

mamaw

[Nancym]

I was diagnosed with AS a couple years back. I have had good luck controlling my symptoms with diet. It might sounds strange but one doctor found evidence that a certain type of pathogen that is found in the intestines secretes something that is very similar to a protein made by the gene HLA B27, which is common (but not always) in AS patients. Anyway, one way to control the disease, many have found, is to limit the consumption of starches. Some people also restrict dairy products and sugars too.

It has certainly worked for me. I had been hurting in nearly every joint, I adopted a "paleo diet" and after about a year I felt much better (gradually all the time). I'm having issues with regular old osteoarthritis though.

Here's a message forum that might help you out if you're interested: Open Original Shared Link

I had a very good rhuematolgist who diagnosed me.

[mm&j]

Nancym- thanks for the information. I actually had googled and found that kiskas.org and signed up. I also just had a big piece of steak and salad for lunch and am going to limit starches even more than I have. It can't hurt I'm sure until I am actually being diagnosed.

mamaw-I am in Wexford. I am Celiac-diagnosed in 2007. My thyroid is fine, no fibromyalga and I am taking Vitamin D and a multiple B vitamin. I know that depression slows the immune system even more but with this constant pain and fatique, I am having trouble at the moment.

Thanks for your responses. I really appreciate it.

Susie (mm&j)

[Fiddle-Faddle]

The thing about a Syndrome is that it is a collection of symptoms (or in this case, a collection of diseases), and the implication is that the doctors have no clue what is CAUSING the syndrome.

This doesn't mean that the cause can't be found.

In your case, it sounds like gluten is not the cause, unless you are getting gluten unknowingly (a faint possibility--you've been at this for 3 years, so you probably know all the possible sources, but you may have been given wrong info form a dietician, as many here have. Rice Dream, for example, SAYS gluten-free on the box, but it isn't--it is processed with barley enzymes. Rice Krispies and Corn Flakes are not gluten-free, though some dieticians are still recommending them to celiacs. Deli tuna salad contains bread crumbs, etc.).

Dairy could be causing your arthritis symptoms. In fact, I remember reading that for RA, gluten AND dairy are equally problematic (can't remember the source, sorry).

And there are a number of people here who have found other causes of problems that they had originally assumed were caused by gluten: mold, candida, mercury toxicity (from dental fillings or vaccines), and Lyme Disease (which a really surprisingly large number of celiacs on this board have been diagnosed with, so be sure to check out the Lyme Disease thread here--most had no knowledge of being bitten by a tick, let alone developing a rash).

Good luck--hope you find answers soon!

OOOOH--I just saw you're in Wexford! I'm in McCandless, just a few miles south of you. Did you know Soergel's is building a completely freestanding gluten-free STORE?????

[mamaw]

Hi

Glad you have already ruled out some of the issues...There is a gluten free meeting in Butler monthly. It is called Gluten Free Cravings. The next meeting is being held on Nov, 6, 08 at 7:00 pm sharp at North Street Christian Church, 220 W North St, Butler,Pa 16002. The Nov meeting will be put on by a member of the group. We have a few members who drive over 2 hours to get to enjoy an evening with others. It is an independent group. Please join us for a meeting.

Did you attend the seminar in Cranberry on Oct 18th?

I see Fiddle-Faddle already mentioned Soergel's sampling fest on Nov 2. They would like a head count if you plan on going to that event.

blessings

mamaw

[mamaw]

Hello again!

The bell went off -- I know who you are now! I thought the girls looked like I had seen them before.... at the seminar!

I'll see you at Soergel's on Nov 2! thanks...