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Diagnosed W/ Ra Today


Taylor King

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Taylor King Rookie

Hi Evereyone,

I was diagosed Gluten Intolerant on April 17th, 2007 and have been on a strict Gluten free diet since. My thryoid antibodies have been cut in half, but my RA test went from a weak positive to strong positive during the same time period. The rheumatologist wanted to put me on methotrexate (sp?), but I managed to talk him into 2 1/2 more months on the gluten free diet b/c I have heard 6 months is a big date for those who have health problems and start to feel better going gluten free.

Does anyone have positive 'remission' stories from RA w/ a gluten free diet? If not, any remission autoimmune stories at all?

Take care,

Taylor


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CarlaB Enthusiast

Were you diagnosed with celiac disease or gluten intolerance? Just curious how you were diagnosed. :)

If you have celiac disease, I would definately try the diet for a while to see if it helps. Some celiacs have joint pain that goes away on the gluten-free diet.

Be sure they rule out Lyme Disease before you start steroids for RA. RA is a common misdiagnosis for Lyme and steroids make Lyme considerably worse. Your doctor will discount how important this is because Lyme is a very political disease right now. Google it and you will learn a lot and check out www.ilads.org. I have significant joint pain from my Lyme.

If you have been tested already, then double check to be sure it was by IGeneX (Open Original Shared Link). Other labs are not as sensitive and leave out Lyme specific bands.

Jestgar Rising Star

A friend of mine with RA and fibromyalgia went gluten-free and casein free on the advice of her doctor to lessen the inflammation. She said it did help, but at that point she was on so many drugs that it didn't help enough for her to want to continue. She's still gluten and casein light, however.

Taylor King Rookie

Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Jestgar, when your friend went on the diet, was it established that her body was having an immune reaction to the gluten and casein? I've heard that part of the reason why going gluten free helps IF you are gluten intolerant is it calms the immune system down. It may help to put other autoimmune diseases that are remaining active due to the immune system being on 'fire' all the time with the gluten consumption calm down as well. I'm very interested in hearing if someone has actually experienced this. As I mentioned, my thyroid antibodies (which were very elevated) were cut in half in the 3 1/2 months since going gluten free, but right now I'm more concerned about this RA stuff.

Take care,

Taylor

nikki-uk Enthusiast
Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Jestgar, when your friend went on the diet, was it established that her body was having an immune reaction to the gluten and casein? I've heard that part of the reason why going gluten free helps IF you are gluten intolerant is it calms the immune system down. It may help to put other autoimmune diseases that are remaining active due to the immune system being on 'fire' all the time with the gluten consumption calm down as well. I'm very interested in hearing if someone has actually experienced this. As I mentioned, my thyroid antibodies (which were very elevated) were cut in half in the 3 1/2 months since going gluten free, but right now I'm more concerned about this RA stuff.

Take care,

Taylor

Hi Taylor,

My husband was dx with Psoriatic Arthritis (similar to RA - no rheumatoid factor) 2 yrs before his dx of celiac disease.

Going gluten-free has improved the level of pain and swelling he suffers - BUT it hasn't disappeared.

His flare ups are less frequent but he does still get them.

The fact that your x-rays already show damage to your joints I would say it's highly unlikely it could be Lyme (Carla? - correct me if I'm wrong?)

RA is a progressive disease and if you are already showing damage to your joints I'd seriously consider trying one of the DMARDS (methotrexate or others)

Although NSAIDS and pain killers can help - DMARDS help stop the progression of damage - and as my hubby has found out once damage is done to your joints not much can be done.

Unfortunately for my hubby he couldn't tolerate the drugs and has damage to various joints.

Alot of damage could occur in 6 months and in my opinion is a big gamble.

It did take several months gluten-free for my hubby to get any relief of his symptoms.

You could try and come off the dmards once firmly established on the gluten-free diet to see if your ok??

Good Luck :)

MaryJones2 Enthusiast

I am not a fan of any medication but I agree with Nikki on this one. If you have a positive RF and show joint damage you should not wait on the methotrexate. DMARDS are the gold standard for RA treatment and there is a lot of research suggesting the sooner you start the better your long-term prognosis. Six months can cause irreparable harm to your joints and the damage becomes more noticable as the swelling subsides. I'd continue with the diet and do the methotrexate.

There was a period of time before my diagnosis that my rheumatologist was concerned that I had RA. I had no RF but had excruciating joint pain and swelling that started about 2 months before my celiac diagnosis. The pain and swelling was particularly bad in my hands and feet which are big areas for RA. At the time he suggested that we start methotrexate because he didn't feel it was worth the risk to wait for the RF to be positive. He wanted to stop any progression and damage. I had a serious reaction to the very first shot and had to discontinue it. Fortunately, this was just a few weeks before I went gluten-free. When I eliminated gluten and dairy the joint pain and swelling went away completely within 2 months. Now, joint pain is one of my big symptoms when I get glutened. I have 1 finger that has permanent joint damage from my 2 month experience. Fortunately, everything points to gluten being the culprit and I suspect that I would've gotten a formal RA diagnosis at some point had I not changed my diet.

One thing on the methotrexate. It can make you anemic so take lots of B vitamins - especially folic acid - before you start.

Best of luck to you!

CarlaB Enthusiast
Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Nikki, there are some people on Lymenet's message board who do have joint damage. I can't say how common it is though.


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CarlaB Enthusiast

Ugh, posting trouble ...

I agree with what everyone else is saying, if you have damage already, you need to move forward with this. If the gluten-free diet helps, you can reduce the medication later.

Since I don't personally know much about RA, but I do know that there are people with Lyme who test positive for it, I'd suggest posting about it on Lymenet to see what more experienced people have to say.

I'm not of the thinking that everyone has Lyme Disease ... it's just that Lyme is so serious, I would want to rule it out if I had a disease with similar symptoms, especially one that required drugs that are counter-indicated by Lyme. Plus, Lyme can cause autoimmune type conditions in the body, which could answer the question of why so many of us Lymies test postive for gluten intolerance and thyroid trouble.

Taylor King Rookie

Thank you everyone for your comments. I forgot to mention that I have been on Plaquenil (one of those drugs) since Oct before the tests became positive. Which really concerns me that I would have joint damage so soon even on one of those drugs.

That is the only reason the doctor has agreed to hold off on the methotrexate for 2 1/2 more months. But maybe I should do aggressive treatment now that it came up positive. Would my doctor let me walk out the door so easily if it was the wrong decision?

I am interested in the Lyme disease, but I had brought that up to another doctor last Oct and he practically jumped down my throat for even asking the question. I saw one of the discovery channel shows that indicated it is very easy to get a 'false negative'.So it sounds difficult to diagnos. I don't want to make a decision I regret.

Take care,

Taylor

Taylor King Rookie
Ugh, posting trouble ...

I agree with what everyone else is saying, if you have damage already, you need to move forward with this. If the gluten-free diet helps, you can reduce the medication later.

Since I don't personally know much about RA, but I do know that there are people with Lyme who test positive for it, I'd suggest posting about it on Lymenet to see what more experienced people have to say.

I'm not of the thinking that everyone has Lyme Disease ... it's just that Lyme is so serious, I would want to rule it out if I had a disease with similar symptoms, especially one that required drugs that are counter-indicated by Lyme. Plus, Lyme can cause autoimmune type conditions in the body, which could answer the question of why so many of us Lymies test postive for gluten intolerance and thyroid trouble.

Hey Carla,

I have posted a question on Lymenet, so we'll see what they say. I'm wondering if the Plaquenil will interfere with testing for Lyme. Also that Cyclic citrullinated peptide antibodies test is supposed to be a predictor. Like maybe even years in advance of the getting RA (I think). It's so odd that I would have horrible joint pain and test negative. Then eventually over this past year that test kept increasing until it is now 'strong positive'.

To quote my friend, "Ordinarily this antibody is present sometimes years in advance of symptoms and is often used as a predictor. It almost seems to me that something was causing the joint inflammation and your body responded by churning out antibodies to get rid of it. Autoimmune disorders traditionally involve antibodies which attack the bodies own tissues. One does have to ask the question given the timeline whether it isn't in fact antibodies attacking your joints but something else. It's unlikely to be Lymes disease but it is notable that Lymes disease produces joint inflammation very similar to RA with the difference being that in the case of LD, the bacteria is easily identified."

Take care,

Taylor

CarlaB Enthusiast

Yeah, that's the reaction I'd expect. It's the same one I got from my ob/gyn at my last appt.

Plaquenil is a drug used for Lyme treatment. Did you feel worse at all when you started it? I take 200 mg. per day. It busts open the dormant form of the Lyme ... so if you felt worse, I'd really pursue the testing.

Here's a video that shows a lot about Lyme. Open Original Shared Link It's worth the trouble to download the right player to see it. It explains somewhat the political nature of Lyme among the medical community. So does Open Original Shared Link under faq's.

It is easy to get a false negative, especially if you don't use Open Original Shared Link for testing. Plus, as always, get a copy of your results. The CDC standards are for tracking purposes ONLY, not diagnostic ... yet most doctors use them for diagnostic purposes.

Jestgar Rising Star

Hi Taylor,

You're getting a lot of great info here so I'll just answer your question.

My friends N.D. believes that both gluten and casein can cause inflammation in everybody and if you already have an inflammatory disease like RA you may be able to lessen the symptoms by not eating gluten or casein.

CarlaB Enthusiast
with the difference being that in the case of LD, the bacteria is easily identified."

Take care,

Taylor

Except for this part, he makes perfect, perfect sense. I went 35 years undiagnosed!!! So much for easy. :)

Ann1231 Enthusiast

I have been on the gluten free, casein free life for years and just 2.5 years ago I was diagnosed with RA. I told the dr. I did NOT want to go on methotrexate or anything else, that I would get even stricter with my diet (no rice, no gluten substitutes, etc) and see what happened. Well, from January to October of that year it got much worse. I was bedridden from September to October. Late October I told them I wanted the methotrexate. I've been on it ever since, as well as plaquenil and prednisone as needed. I'm no longer bedridden but I do still have flares. I do get much worse if I"m accidentally glutened but I can't say that gluten-free has improved me a whole lot since I was gluten-free for years before I ever got RA.

Once you have the damage, there's no going back. I fought the drugs all the way until I could no longer bathe myself, lift myself out of bed, walk, or even feed myself. My family had to hold a glass to my lips for me to drink. They literally had to lift the fork of food to my mouth and by the end my jaw was so affected I went on liquids only. They totally supported me in not wanting the drugs though but I got to the point that I saw what it was doing to them, not just what it was doing to me, and I gave in. I'm glad I did, it's made a positive difference in my health and life.

Ann

loraleena Contributor

I have heard that a lot of people with RA feel better when they stop eating nightshades (ie- eggplant,peppers, tomatoes, potatoes).

Taylor King Rookie
I have been on the gluten free, casein free life for years and just 2.5 years ago I was diagnosed with RA. I told the dr. I did NOT want to go on methotrexate or anything else, that I would get even stricter with my diet (no rice, no gluten substitutes, etc) and see what happened. Well, from January to October of that year it got much worse. I was bedridden from September to October. Late October I told them I wanted the methotrexate. I've been on it ever since, as well as plaquenil and prednisone as needed. I'm no longer bedridden but I do still have flares. I do get much worse if I"m accidentally glutened but I can't say that gluten-free has improved me a whole lot since I was gluten-free for years before I ever got RA.

Once you have the damage, there's no going back. I fought the drugs all the way until I could no longer bathe myself, lift myself out of bed, walk, or even feed myself. My family had to hold a glass to my lips for me to drink. They literally had to lift the fork of food to my mouth and by the end my jaw was so affected I went on liquids only. They totally supported me in not wanting the drugs though but I got to the point that I saw what it was doing to them, not just what it was doing to me, and I gave in. I'm glad I did, it's made a positive difference in my health and life.

Ann

Oh Ann,

I'm so sorry to hear about what you have been thru. Do you regret not going on the drugs right away? Have you had any side effects from the methotrexate? What tests were run to determine you had RA?

Also, do you have to be on metho the rest of your life, or can you go off the drug for any period of time?

I guess the only thing going for me is the plaquenil, which i hope is disease modifying. gosh, this is so scary!!!!!

taylor

Taylor King Rookie
Yeah, that's the reaction I'd expect. It's the same one I got from my ob/gyn at my last appt.

Plaquenil is a drug used for Lyme treatment. Did you feel worse at all when you started it? I take 200 mg. per day. It busts open the dormant form of the Lyme ... so if you felt worse, I'd really pursue the testing.

Here's a video that shows a lot about Lyme. Open Original Shared Link It's worth the trouble to download the right player to see it. It explains somewhat the political nature of Lyme among the medical community. So does Open Original Shared Link under faq's.

It is easy to get a false negative, especially if you don't use Open Original Shared Link for testing. Plus, as always, get a copy of your results. The CDC standards are for tracking purposes ONLY, not diagnostic ... yet most doctors use them for diagnostic purposes.

Hi Carla,

I had no idea Plaquenil was also used for Lyme disease. Would that affect my test results? I take 400 mg a day, and my dr just increased it to 600mg a day yesterday in lieu of methotrexate.

If I am on Plaquenil for 9 months, should I be in so much pain still if it is lyme disease, or is there a lot more involved in the treatment?

I felt so bad on the drug, but I was advised it would take up to 6 months for me to feel any better which it did. I can function....barely. But it constant pain. And I can't work right now. I am living with my parents. My cobra insurance runs out Nov 1st. I don't know what I will do then, b/c no one will want to insur me then! Yikes!

Taylor

Taylor King Rookie
I have heard that a lot of people with RA feel better when they stop eating nightshades (ie- eggplant,peppers, tomatoes, potatoes).

thank you, loraleena.

Taylor

CarlaB Enthusiast
Hi Carla,

I had no idea Plaquenil was also used for Lyme disease. Would that affect my test results? I take 400 mg a day, and my dr just increased it to 600mg a day yesterday in lieu of methotrexate.

If I am on Plaquenil for 9 months, should I be in so much pain still if it is lyme disease, or is there a lot more involved in the treatment?

I felt so bad on the drug, but I was advised it would take up to 6 months for me to feel any better which it did. I can function....barely. But it constant pain. And I can't work right now. I am living with my parents. My cobra insurance runs out Nov 1st. I don't know what I will do then, b/c no one will want to insur me then! Yikes!

Taylor

I don't think it would affect testing because it's not an abx, but I don't know. You could ask the folks over at IGeneX what they think.

It is more complicated to treat Lyme ... Plaquenil goes after the cyst form, but there are two other forms of borrelia, so you need two other medications (abx) for these forms. Plus, many of us have coinfections.

I hope you get answers soon. It's really hard being chronically ill and disabled from it.

Taylor King Rookie
Except for this part, he makes perfect, perfect sense. I went 35 years undiagnosed!!! So much for easy. :)

35 years!!!!! Carla, that sounds like a nightmare. How did you cope? Did you find much relief with treatment? What was the treatment? I've heard that there is only a small window of opportunity to really get the lyme disease for a good recovery. Is this true? If so, do you know how long this is? I've been sick since May '06. I'm worried it is too late for me to get good results if it is that. I definitely agree I need to get tested b4 moving forward with serious treatment for RA. I've also decided to get a second opinion for the RA.

My mom got this off the CDC website. What is your opinion of this information?

CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.

1) The first step uses an ELISA or IFA test. These tests are designed to be very

CarlaB Enthusiast

Hi Taylor, I don't know what the specific rate of accuracy for the first tier of the test is, but it's VERY low. Many people with proven Lyme test negative for it. Also, the comment about the IgM being a false positive is inaccurate. The reason is that the Lyme cycles. The IgM is indicative of a new infection with most diseases, but with borrelia (Lyme), the bacteria is refreshed periodically so will often show an IgM positive on a chronic Lyme patient. Lyme docs look at the specific bands that show positive ... if they are Lyme specific, it shows positive exposure to Lyme because nothing else could have caused it. Lyme is ultimately a clinical diagnosis (even the CDC agrees), so the testing is only used to support the diagnosis ... it's a diagnosis of symptoms supported by testing.

Many people who have had Lyme for a long time end up testing negative. It's because of the effect of Lyme on the immune system.

I believe Open Original Shared Link has more information on this. I'm vague because I don't have all the facts, just a general understanding of it.

People who are treated right away have the chance of completely eradicating the Lyme. People like me work for remission, then to stay there. The problem I have with the CDC's recommendations is that they mention someone who has had Lyme for a long time will have complications, then they say that the Lyme just goes away, or that it gets treated exactly the same as a person who got bitten today. They treat tuberculosis, also a bacterial infection that can be both active and dormant, for two years or more, but they deny Lyme needs the same length of treatment.

Show your mom the video ... did I post this yet? Open Original Shared Link

Now, for your questions about me ...

I mostly had the disease in the dormant state. I would have minor symptoms that I thought everyone had. Four times it's flared up so that it disabled me for months at a time. This time, the fourth time, it's been years instead of months.

I've been into health food and supplements religiously for a couple decades now because they make me feel better. I've also been very aware of diet and exercise.

This last flare was the most major. I had joint pain, muscle aches, night sweats, air hunger, heart palpitations, weight loss, diarrhea, food sensitivities, disorientation, get lost driving familiar places, have trouble reading, problems with word recall, poor short term memory, hair loss, extreme fatigue, insomnia, loss of appetite, etc. This time it started with the joint pain, but over the next four years progressed to all these symptoms.

I was told I had Somatization Disorder. I demanded an IGeneX Lyme test and tested IgG positive. Doctor STILL maintained I had Somatization Disorder, not Lyme. Now I fly to see a Lyme specialist in NY. He's the guy on the video with the wild tie.

I was about 15% of normal back in January when I started treatment. Now I'm about 75-80% and improving monthly. I've come a long way and we expect a full recovery.

My treatment is long term abx, anti-protozoals, anti-fungals, probiotics, and many immune system building supplements.

It's really good that you are taking your health into your own hands and researching it yourself. BTW, I'm six goofy kids on LN. I chose a more anonymous name there since I talk about specifics of my medical treatment.

CarlaB Enthusiast

I just wanted to let you know that your post over at LN has a LOT of responses today!

Guest Doll
Hi Taylor, I don't know what the specific rate of accuracy for the first tier of the test is, but it's VERY low. Many people with proven Lyme test negative for it. Also, the comment about the IgM being a false positive is inaccurate. The reason is that the Lyme cycles. The IgM is indicative of a new infection with most diseases, but with borrelia (Lyme), the bacteria is refreshed periodically so will often show an IgM positive on a chronic Lyme patient. Lyme docs look at the specific bands that show positive ... if they are Lyme specific, it shows positive exposure to Lyme because nothing else could have caused it. Lyme is ultimately a clinical diagnosis (even the CDC agrees), so the testing is only used to support the diagnosis ... it's a diagnosis of symptoms supported by testing.

Many people who have had Lyme for a long time end up testing negative. It's because of the effect of Lyme on the immune system.

I believe Open Original Shared Link has more information on this. I'm vague because I don't have all the facts, just a general understanding of it.

People who are treated right away have the chance of completely eradicating the Lyme. People like me work for remission, then to stay there. The problem I have with the CDC's recommendations is that they mention someone who has had Lyme for a long time will have complications, then they say that the Lyme just goes away, or that it gets treated exactly the same as a person who got bitten today. They treat tuberculosis, also a bacterial infection that can be both active and dormant, for two years or more, but they deny Lyme needs the same length of treatment.

Show your mom the video ... did I post this yet? Open Original Shared Link

Now, for your questions about me ...

I mostly had the disease in the dormant state. I would have minor symptoms that I thought everyone had. Four times it's flared up so that it disabled me for months at a time. This time, the fourth time, it's been years instead of months.

I've been into health food and supplements religiously for a couple decades now because they make me feel better. I've also been very aware of diet and exercise.

This last flare was the most major. I had joint pain, muscle aches, night sweats, air hunger, heart palpitations, weight loss, diarrhea, food sensitivities, disorientation, get lost driving familiar places, have trouble reading, problems with word recall, poor short term memory, hair loss, extreme fatigue, insomnia, loss of appetite, etc. This time it started with the joint pain, but over the next four years progressed to all these symptoms.

I was told I had Somatization Disorder. I demanded an IGeneX Lyme test and tested IgG positive. Doctor STILL maintained I had Somatization Disorder, not Lyme. Now I fly to see a Lyme specialist in NY. He's the guy on the video with the wild tie.

I was about 15% of normal back in January when I started treatment. Now I'm about 75-80% and improving monthly. I've come a long way and we expect a full recovery.

My treatment is long term abx, anti-protozoals, anti-fungals, probiotics, and many immune system building supplements.

It's really good that you are taking your health into your own hands and researching it yourself. BTW, I'm six goofy kids on LN. I chose a more anonymous name there since I talk about specifics of my medical treatment.

Yay! I'm so glad you found out what's wrong, and that you are on your way to feeling better! :)

Ann1231 Enthusiast
Oh Ann,

I'm so sorry to hear about what you have been thru. Do you regret not going on the drugs right away? Have you had any side effects from the methotrexate? What tests were run to determine you had RA?

Also, do you have to be on metho the rest of your life, or can you go off the drug for any period of time?

I guess the only thing going for me is the plaquenil, which i hope is disease modifying. gosh, this is so scary!!!!!

taylor

I do regret not going on mtx right away and yet I wouldn't appreciate what I've got if I hadn't gone thru all that. I do get some nausea and I've had some hair loss but it's worth it. I had and have regular (6 to 8 week) blood tests done that test rheumatoid factor, c-reactive protein, liver counts, Sed-rate and I don't remember what else.

I will be on mtx until it no longer works I guess. There's no talk of going off of it at this point anyway.

This can be a scary disease but it is manageable most times.

Ann

gfpaperdoll Rookie

We have RA in my family & but I do not have it. I think it is because of my lifelong attention to my diet because of food allergies. I was allergic to barley & oats for 35 years & for the past 10 years I was wheat light & then gluten free now for 3 years. BUT, I rarely eat any replacement grains, & I do not eat beef & I do not eat the nightshades. Those potatoes I feel are a huge contributor to join pain. I also never drank orange juice which I think goes straight to the joints & makes them swell up <_< & I am dairy free

also, no coffee, no tea, no sodas. And I eat a healthy diet with very little junk. I recommend a couple of books Eat Right for Your Blood Type, & Super Foods & Dangerous Grains, for people that are wanting to change their diet.

For RA I think you have to start with gluten free, dairy free, soy free, grain free, (maybe rice & corn if you can handle it) nightshade family free & then see what happens.

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    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory.                               Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
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