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Hello beautiful people:

I need to know, how long have you been gluten-free? AND how long have your Celiac Disease related symptoms persisted AFTER having been gluten-free?

PAST: I ask because I've had celiac disease for about 4 years. (What brought my attention to the disease at first was persistent, severe joint pains that went away shortly after I became sometwhat gluten-free.) I have NOT been eating properly during this time either intentionally or unintentionally.

PRESENT: I have had severe to mild joint and muscle pains, stiffness and soreness for almost 1.5 months. (Rheumatoid Factor has come back normal. Internal inflammation slightly high with a Sed Rate 21.) I have been on a lectin and gluten-free diet for almost a month and a week. Symptoms fluctuate in severity. The past two weeks have been the best relatively speaking, although its day by day.

HAVE YOU EVER EXPERIENCED THESE SYMPTOMS AFTER BEING GLUTEN-FREE? FOR HOW LONG???? TELL ME ABOUT YOUR EXPERIENCE PLEASE!!!!

Thank you in advance.

P.S. I am seeing a GI who think it's a complication with celiac disease and a Rheumy who thinks that could be a complcication that will correct itself and that is not Rheumatoid Arthritis.

P.P.S. I get my second rheumatoid factor and ANA results on Friday. Pray for me. With love!

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Yes, my digestive symptoms got better, then went back, then I cut dairy and they got better, but they've been not as great for the past week or so (I think I got glutened). The muscle pain and fatigue, however, are worse. My first ANA was a low postive, but last week it was retested and is way down and normal. :)I hope yours will be too. I'll post here if I find something to help with the muscle pain. Lately I've just been taking tylenol PM a lot at night to get a good rest and relax the muscles and do yoga once a week.

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I've been gluten free for about 3 weeks, symptoms went away quickly and I felt great, solid stools feel sooo good :D , minus one day of heavy gluten, woke up the next morning with an extreme hangover, the type I usually get after drinking a case of beer. And ever since this one time of gluten (was a week and ahalf ago) I've been feeling groggy, tired, and my stomach hurts. Dunno why it brought back the symptoms with vengence, but they refuse to go away even with gluten-free.

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PRESENT: I have had severe to mild joint and muscle pains, stiffness and soreness for almost 1.5 months. (Rheumatoid Factor has come back normal. Internal inflammation slightly high with a Sed Rate 21.) I have been on a lectin and gluten-free diet for almost a month and a week. Symptoms fluctuate in severity. The past two weeks have been the best relatively speaking, although its day by day.

HAVE YOU EVER EXPERIENCED THESE SYMPTOMS AFTER BEING GLUTEN-FREE? FOR HOW LONG???? TELL ME ABOUT YOUR EXPERIENCE PLEASE!!!!

I had horrible joint pain before I changed my diet. (I think I responded to an earlier post of yours.) My sed rate was over 60 and my rheumatoid factor was negative. It took me about 5 days after eliminating wheat/gluten, eggs, milk, soy, potatoes, tomatoes, peppers to get some significant relief. After a month I was A LOT better, after 8 months we went to Disneyland and I walked for 12 hours a day and after a year I felt "normal". So I guess I did have symptoms after changing my diet, but they slowly subsided. I would encourage you to be very strict. I ate only fish, rice, vegetables and a few nuts and a few types of fruit for a whole year. It was worth it. I no longer have any joint pain whatsoever. I do have to say that during those times when I tried to reintroduce things like spelt and oats into my diet I did get some achy joints, I finally figured out it was gluten. (I had been told I would get over my intolerances or "allergies", so I kept experimenting.)

Good luck!

Liz

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Hello beautiful people:

I need to know, how long have you been gluten-free? AND how long have your Celiac Disease related symptoms persisted AFTER having been gluten-free?

PAST: I ask because I've had celiac disease for about 4 years. (What brought my attention to the disease at first was persistent, severe joint pains that went away shortly after I became sometwhat gluten-free.) I have NOT been eating properly during this time either intentionally or unintentionally.

PRESENT: I have had severe to mild joint and muscle pains, stiffness and soreness for almost 1.5 months. (Rheumatoid Factor has come back normal. Internal inflammation slightly high with a Sed Rate 21.) I have been on a lectin and gluten-free diet for almost a month and a week. Symptoms fluctuate in severity. The past two weeks have been the best relatively speaking, although its day by day.

HAVE YOU EVER EXPERIENCED THESE SYMPTOMS AFTER BEING GLUTEN-FREE? FOR HOW LONG???? TELL ME ABOUT YOUR EXPERIENCE PLEASE!!!!

Thank you in advance.

P.S. I am seeing a GI who think it's a complication with celiac disease and a Rheumy who thinks that could be a complcication that will correct itself and that is not Rheumatoid Arthritis.

P.P.S. I get my second rheumatoid factor and ANA results on Friday. Pray for me. With love!

As far as Celiac's goes, I am relatively "new" to this with dd and I being gluten-free for just over a year (no official celiac disease diagnosis on either of us though dd has symptoms). However, I have LOTS to say about food allergies and nutrition in general as that is something I deal A LOT with! :D There are several foods which could be contributing to your joint pain and a pp has done a VERY good job at pinpointed several of them.

If you want to experiment a bit with your diet to see if something more could help, here's a "quick" list of foods commonly found to alleviate or contribute to arthritis pain.

Foods to MAXIMIZE: fresh fruits and vegetables (with the exception of those listed on the ELIMINATE list); fluids (distilled water as much as possible); oily fish such as tuna, salmon, herring, sardines; anti-inflammatory herbs (chamomile, ginger, licorice, meadowsweet) to help reduce pain and joint deterioriation; herbal diuretics (dandelion leaf) and lymphatics (red clover flowers) to encourage elimination of waste products. (The herbs are easily done as teas. However, be VERY careful of licorice. It should only be used on the worst days and never as a daily part of your routine).

Foods to ELIMINATE: Food allergies or intolerances with problem foods often being: corn, dairy products, tomatoes, potatoes, eggplant, peppers, cayenne, wheat, eggs, chocolate and peanuts. Note: the vegetables being eliminated are those of the nightshade family. From what I have read, humans can only produce the enzyme to break these foods down every 2-3 days. Most of us eat potatoes AT LEAST once per day. This is very hard for the body to process. Limit meat, especially red meat (beef, pork and ham); processed meat products (ham, hamburgers, sausages, processed cold meat cuts) all of which can stimulate inflammation. Avoid margarine, shortening and heat processed oils. Replace with extra virgin olive oil, palm oil, coconut oil. Avoid shellfish, processed and tinned foods, sugar and artificial sweeteners (replace with raw honey, pure maple syrup or stevia). Also avoid citrus fruits, which in rheumatoid arthritis can stimulate food allergies. And finally, avoid all vinegar products (except for apple cider vinegar), alcohol, food additives, food contaminants from pesticides and junk food.

The list seems long, but it is meant to be individualized. This just covers the usual sources of dietary contributors in arthritic conditions. I also have a friend who has advanced psoriatic arthritis. She was told that her condition could only remain where it was or get worse. With changes to diet, she is now showing marked improvement on her latest tests and her doctors are now asking what she is doing (meanwhile, she is not even close to a strict adherence to diet). She has other medical conditions which make it impossible for her to follow the traditional route of NSAIDS and other drug therapies. I should also mention that I told her about a product called Omegasentials to help her get the omegas most of us are usually deficient in. It is gluten-free. My friend mentioned a HUGE improvement upon starting this supplement compared to the Omega 3-6-9 she was taking before. Her doctor is looking into this connection further and has even recommended folic acid supplementation. LOL!! That is the FIRST time I have ever heard of a doc suggesting supplements as opposed to prescription drugs. Apparently, he is so shocked by her progress that he's been reading into all of the research articles I sent her a few months back.

Hopefully, your case will continue to get better simply through time on a gluten-free diet. If not, hopefully something I've mentioned may help you get better more quickly. Either way, good luck to you and I hope you reap the benefits of improvement soon!

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Yes, my digestive symptoms got better, then went back, then I cut dairy and they got better, but they've been not as great for the past week or so (I think I got glutened). The muscle pain and fatigue, however, are worse. My first ANA was a low postive, but last week it was retested and is way down and normal. :)I hope yours will be too. I'll post here if I find something to help with the muscle pain. Lately I've just been taking tylenol PM a lot at night to get a good rest and relax the muscles and do yoga once a week.

Yes, my digestive symptoms got better, then went back, then I cut dairy and they got better, but they've been not as great for the past week or so (I think I got glutened). The muscle pain and fatigue, however, are worse. My first ANA was a low postive, but last week it was retested and is way down and normal. :)I hope yours will be too. I'll post here if I find something to help with the muscle pain. Lately I've just been taking tylenol PM a lot at night to get a good rest and relax the muscles and do yoga once a week.

I might be mistaken, but doesn't Tylenol contain gluten? I know Advil is O.K..

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Thanks EVERYONE for your responses so far.

Yeah, Julie5914, I'm not sure if Tylenol is gluten-free, that might be part of the problem. As posted, I have heard that Advil is gluten-free.

Good luck with everything everyone. Please continue to send me information as you get it as it relates to joint/muscle pain, stiffness and soreness.

Florence

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Tylenol is gluten free which is good as I am allergic to all NSAIDS. So no asprin, advil or any of that stuff! Are you sure you have cut all gluten out of your diet?

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I've been gluten free for 3 months, dairy free for 2.5 days. I'm still suffering from joint/muscle/tendon pain and I just broke out with eczema! Argh! I'm going to try a very minimalist diet and omit every possible bad thing and try adding things experimentally.

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Tylenol is gluten free which is good as I am allergic to all NSAIDS. So no asprin, advil or any of that stuff! Are you sure you have cut all gluten out of your diet?

Nancy, I encourage that diet change. I am hoping that my joint/muscle pains, stiffness and tenderness are related to my diet. So, I'm gluten-free (due to Celiac) and lectin-free to be safe. I basically eat only vegetables, fruits and meats/chicken/some fish. I can't say that I've seen drastic results. It is day to day and a bumpy road at that. Although, I think I am moving on an incline back to "normal".

I hope these words find you well. Let me know of any ideas and progress.

Florence

Becky, I'm pretty sure that I've cut almost gluten out of my diet as I am only eating fruits, some vegetables and meat/chicken prepared in olive oil with garlic, goya seasoning and onions. Have any other ideas what might be causing these pains? Have you ever heard of someone's symptoms persisting 2+ months after being gluten-free?

Flo

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I had joint pain before I went on the gluten-free diet and it cleared up within 4-5 months on the diet. The pain was in my knees, hips, and ankles. I would have trouble walking sometimes. Very rarely have I had the pain since going gluten free and I'm assuming the pain probably is related to gluten accidents.

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Tylenol is gluten free which is good as I am allergic to all NSAIDS. So no asprin, advil or any of that stuff! Are you sure you have cut all gluten out of your diet?

There is an alternative to the NSAIDS called Serralone™ (serratiapeptidase). It is a protoelytic enzyme made from silkworms that breaks down fibrin in the system and helping to reduce inflammation. I haven't seen any mention of glutens in it as it states it has NO fillers. It is being used more extensively in Europe and Asia but is available in the U.S.. I had a friend use it for pain she was experiencing due to a torn muscle in her chest. She said it worked very well to diminish the pain and she was off of it within a week. It is supposed to be helpful with rheumatoid arthritis also. For those who are allergic to NSAIDS and other meds, it may be a viable option for you and isn't too terribly expensive.

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I've been gluten-free for a bit over two years now. I get those symptoms, but from other causes, not the celiac, it appears. I would think that inflammatory conditions like that, however, are going to take longer than a month or two to calm down, and it looks like you're moving in the right direction, so that's a good sign.

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I'm new - just getting started. I'm also confused about a few things... what is dd and pp? Haven't caught onto the shortcuts yet :)

I was feeling pretty good, energized and 'up' yesterday a.m. Been really gluten-free for less than a week. As my morning progressed my stomach started hurting. to make this short, by the evening i could have been rolling around in the fetile position if I could have. stomach hurt so that the pain was around me - sides and through to the back (this was why I went to the GI in the first place) This kind of hurt makes my back spasm and now I can't take anything for that (NSAIDS have ruined my stomach and I'm still healing). I tried everything including some add'l stomach meds. I'm taking Nexium for hiatal hernia. I don't know if I got glutened or just a normal back slide. I ate 1 egg and a little ham for bfast, ate 6 pisachios, because my stomach was hurting and I thought I needed something in it and I haven't had a chance to really stock up on gluten-free, I ate an Atkins Bar (reportedly to be gluten-free) and some orange sherbert (also supposed to be gluten-free). By the time I got home from work I was miserable, stomach felt weird like maybe hungry maybe nauseated so i ate some baked chicken, green beans, a small piece of plain sweet potato. Today I'm somewhat better. I should say I've always seeked food when my stomach was not right - strange I know.

So, is this normal to do better and than crash? I've got a call to my GI. If he had been less than the hour away that he was I would have been there yesterday afternoon.

After reading here I now see that so many of my health probs were celiac disease and I've not been well for almost 2 years and now only put it together, including my first case of yeast infection, major sinus allergies that won't go away, joint pain, brain fog (I like that accurate description), constipation, bloating, insomnia... what about heart flutters? So when I get this under control, I'll feel like a million dollars? a 55 year old million dollars? ;)

Keep posting so I can keep learning!

Tina

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I'm new - just getting started. I'm also confused about a few things... what is dd and pp? Haven't caught onto the shortcuts yet :)

I was feeling pretty good, energized and 'up' yesterday a.m. Been really gluten-free for less than a week. As my morning progressed my stomach started hurting. to make this short, by the evening i could have been rolling around in the fetile position if I could have. stomach hurt so that the pain was around me - sides and through to the back (this was why I went to the GI in the first place) This kind of hurt makes my back spasm and now I can't take anything for that (NSAIDS have ruined my stomach and I'm still healing). I tried everything including some add'l stomach meds. I'm taking Nexium for hiatal hernia. I don't know if I got glutened or just a normal back slide. I ate 1 egg and a little ham for bfast, ate 6 pisachios, because my stomach was hurting and I thought I needed something in it and I haven't had a chance to really stock up on gluten-free, I ate an Atkins Bar (reportedly to be gluten-free) and some orange sherbert (also supposed to be gluten-free). By the time I got home from work I was miserable, stomach felt weird like maybe hungry maybe nauseated so i ate some baked chicken, green beans, a small piece of plain sweet potato. Today I'm somewhat better. I should say I've always seeked food when my stomach was not right - strange I know.

So, is this normal to do better and than crash? I've got a call to my GI. If he had been less than the hour away that he was I would have been there yesterday afternoon.

After reading here I now see that so many of my health probs were celiac disease and I've not been well for almost 2 years and now only put it together, including my first case of yeast infection, major sinus allergies that won't go away, joint pain, brain fog (I like that accurate description), constipation, bloating, insomnia... what about heart flutters? So when I get this under control, I'll feel like a million dollars? a 55 year old million dollars? ;)

Keep posting so I can keep learning!

Tina

Are you totally gluten free? Meaning, shampoos, soaps, makeup (esp. lipstick). Also lot of cold cuts have gluten. Was your ham a processed cold cut? Boars head is gluten free and so is applegate farms. I would stay away from commercial processed foods ( always chance of cross contamination). Also make sure you have your own pots and pans, utensils and toaster. One crumb is all it takes.

I did have lots of ups and downs. But it also took a while until I realized all the ways I might be getting glutened. I can say I am 80-90% better since going gluten free in July. I still have off days though. Watch out for other food sensitivities as well. Good luck.

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Tina, I would try cutting out dairy to see if it helps. The Adkins bar and the sherbet probally had dairy in them. It didn't bother me much at first and the longer I was gluten free the more it started to put me in absolute pain.

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