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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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tigerlily6200

Systemic Tendonitis

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I developed tendonitis in my left foot in 1995 I was 17. I developed hypothyroidism in 1996 @ 18. Ive had tendon issues in my left foot since and at some point also in my right. I have had plantar faciitis in both feet for over a year. In January muacles were really sore and tenderness in hands. In March I tested positive with blood work for celiac. My vit d, vit b, and iron were very low while sed rate waa low but crp was high.

Now my ortho says my fingers have trigger fingers in both hands aka tendonitis. Has anyone else experienced system wide inflammation and had it go away off of gluten? Ive only been off gluten for 27 days.

What else could be going on or is this normal?

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There are MANY around here who have pain from gluten and who have found relief with the gluten-free diet. I started getting arthritic like pain in my early 20's which became more and more frequent as time went on. I am now pain free... I'm not entirely sure that eating gluten-free caused the pain to go, as it often cycled out after a few months, but I'm hopeful that the gluten-free diet made it go away after I had been gluten-free for 6 months.

 

Pain seems to be one of the last symptoms to go - some people seem to require a year or so. You may need to give it a LOT of time to see improvements in this area. To be honest, I was at the point where I assumed my pain must not have been linked to celiaC; I had already and accepted it and moved on.... and then the pain left!  LOL Patience is definitely needed, so hang in there.

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My CRP was sky high for a couple of years while my rheumatoid symptoms and psoriasis did not seem to be diet responsibe at all.  Almost overnight the diet seems to be have the desired effect.  CRP is at times normal, no meds for several months :)   Hoping I don't get another flare.

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For me the type of pain you describe is a combo of celiac and thyroid.

I was gluten-free for apx 6 months before some of the hand shaking went away. The hand pain was there til I started a workout routine at 1 year. Now, I will get joint pain/tendon pain when I have a Hashimotos/thyroid flare.

Working out helped - but you must go incredibly slow. I am hypermobile-and found out the hard way. AI diseases can damage your tissue -ligaments, tendons. Stay off the weights and stick with gentle cardio and isometrics at first. Also, your thyroid treatment may not be optimized-allowing inflammation to continue, along with hormone and adrenal insufficiency which continues the soft tossue damage cycle.

If you have both celiac and thyroid it can be difficult to differentiate the symptoms sometimes. For me, gluten had some very direct effects (rash) and many subtle ones. Overall, it's an exacerbator. Once I was clean of gluten I found what I was left with were thyroid and adrenal issues. They require a thorough tweaking of meds - adding adrenal cortex, dhea, and now t3 to my existing t3/t4 meds. I am rt3 resistant. All of those supplaments are in conjunction with the iron, d3, and multivitamin for the deficiencies from celiac. My doc also tossed in chromium for blood sugar control (adrenals again) and now I'm under orders to eat Brazil nuts to selenium to boost my levels (already take it in multi but she wants me to eat it too).

So, I guess my point is that you're really fighting two tendon battles here. You may have a strong positive reaction to going gluten-free; however, don't discount the importance of readressing your thyroid, especially if you are Hashimotos.

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Thank you so much for the replies.  Sometimes I feel as if the world thinks I'm crazy.  I go to a chiropractor and when I asked him why etc., it's always well it could an AI and I'm like duh you know I was just diagnosed with celiac and I have hypothyroid disease.  Mentally, emotionally, and "inside" I feel better than I have in years in just 28 days; but the tendon issues are just there.  My husband, who has been great, travels a lot for work and they've let him stay home to help some but I know that won't last too much longer.  It just seems like the list goes on and on.  Plantar fasciitis, knee issues, an injury that lead to trigger finger... I'm really trying to continue to be positive but with summer coming and 3 kids 5 and under - I just want to be completely whole again.  It's nice to know that others had successful outcomes with their issues no matter how long it took.

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Thank you so much for the replies. Sometimes I feel as if the world thinks I'm crazy. I go to a chiropractor and when I asked him why etc., it's always well it could an AI and I'm like duh you know I was just diagnosed with celiac and I have hypothyroid disease. Mentally, emotionally, and "inside" I feel better than I have in years in just 28 days; but the tendon issues are just there. My husband, who has been great, travels a lot for work and they've let him stay home to help some but I know that won't last too much longer. It just seems like the list goes on and on. Plantar fasciitis, knee issues, an injury that lead to trigger finger... I'm really trying to continue to be positive but with summer coming and 3 kids 5 and under - I just want to be completely whole again. It's nice to know that others had successful outcomes with their issues no matter how long it took.

You've got to get your brain around healing damage body-wide. That was difficult for me - to accept that these things with my intestines and thyroid (sounds isolated, right) had torn up so many other systems. I also had to accept that I needed more than "gentle" supplemental nudging. I did much better once on adrenal cortex and dhea - after fighting the suggestion for months. The vitamin/mineral deficiencies are nothing to sneeze at. Take as much as you can without making yourself ill - you're only absorbing a portion with a damaged gi tract.

It can be a long road. I found progress was felt periodically. I would wake up and one thing would just be gone. It wasn't gradual.

And exercise. Healing accelerated on exercise. Go slowly. Very slowly. Swimming?

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You're right.  I guess I keep wanting the quick response.  I try to remind myself that it took me "x" number of years to get to this place and it will take some time to get better.  Today is a particalurly bad day, my feet haven't hurt like this in a long time and my fingers were swollen (I couldn't get my rings on for church).  I had some rice crackers yesterday and some very salty spinach, I'm wondering if salt could play a part into it.  I need to focus on this will be a long journey not a short one.  I just get discouraged when I'm at an appt and a practioner tells me "I don't know why your symptoms haven't cleared after 28 days."  Today is one of those days (right before my period) that I would kill for a hamburger or cake... this elimination diet doesn't contain either of those ;)

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Oh, pms is a beetch. I swell, too.

Good news is you're likely to see changes (what, who knows) after you get on the right track.

And I don't know what you're eliminating but there are some pretty creative sweets out there using bean flours, stevia, etc.

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I've been doing the functional medicine elimination diet no soy, corn, wheat, gluten, diary, sugar, caffeine for 29 days now.  I am definitely getting ready to start my period and just grumpy.  It's almost my body is like an old car, when one thing broke, everything did.  Has anyone tried acupuncture before?  I honestly don't know what to do - I've been to the chiropractor for a month now and although my range of motion is better, I can't tell if and when it's suppose to help?  I feel like it's a big puzzle, luckily I'll get to see my doctor in the next couple of weeks.  Has anyone had leaky gut?  I have a feeling that's the next thing I will have to deal with. 

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We all have or have had leaky guts to a degree. It's what happens when gluten destroys your intestine (or what happens first....chicken/egg argument).

I've tried acupuncture and while it wasn't unpleasant, and I did notice some relief, I didn't continue. So, give it a whirl.

I have tried orthopedic massage and found it by far the most beneficial when dealing with my hyper mobility/loose ligaments/tight tendons.

I think I'd be shoving some sort of naughty food down my throat - potato chips??? A girl has to have a crutch.

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Duh I'm so new to this disease that I forget you guys actually know what I'm talking about.  Lol I ate those rice crackers yesterday like a crutch lol I'll take the small things... so what is chiro massage?  Right now I go to his office they hook me into some machine that sends electrical pulses into my back, then it rolls my back.  Then he either massages my feet and stretches that muscle or pulls my right hand so that it's stretching the tendons (I guess).  I just want someone to take me by the hand and say - this is what is going on, this is why and we're going to do this.  I thought my chiro was that person - he talked about my feet causing my knees, seemed to think whatever the treatment plan he has laid out for me would work but then his comment on Friday made me want to scream.  I asked, "why did I get trigger finger or whatever in my other hand, what is going on"  I don't know maybe it's an autoimmune or maybe it's not... and I was like ummm what is thyroid disease or celiac?  Didn't you tell me 3 weeks ago that the inflammation was systemic caused by my leaky gut etc.  I left my original doctor because after I went to her with feet pain she ran an arthritis panel which everything came back fine except my ANA which was slightly elevated according to the doctors at Wake Forest and the Rheumys wouldn't even see me unless I came back with other symptoms than joint pain and foot pain.  Then I found Dr, Susan (functional medicine) whom I love just because she listened to me and had the forethought to test me for celiac or I would have just been going around in circles. 

 

It's just hard because I want to be better, feel better all the time.  Nothing aching, nothing swollen.

 

Oh and a big piece of cake ;) gluten free of course

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B6 def will aggravate premenstrual swelling....

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I developed tendonitis in my left foot in 1995 I was 17. I developed hypothyroidism in 1996 @ 18. Ive had tendon issues in my left foot since and at some point also in my right. I have had plantar faciitis in both feet for over a year. In January muacles were really sore and tenderness in hands. In March I tested positive with blood work for celiac. My vit d, vit b, and iron were very low while sed rate waa low but crp was high.

Now my ortho says my fingers have trigger fingers in both hands aka tendonitis. Has anyone else experienced system wide inflammation and had it go away off of gluten? Ive only been off gluten for 27 days.

What else could be going on or is this normal?

I haven't tried a gluten-free diet yet, but I've had system-wide tendinitis for at least 23 years. I can't even use a computer keyboard

– voice recognition for everything.

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I am also dealing with the combination of hypothyroid and Gluten intolerance. I did not realize it would take so long for my joint pain/tendonitis/carpal to improve. This website is such a lifesaver. I am going to check out orthopedic massage for sure!

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I have only just been diagnosed with Celiac (30 years earlier would have been good) and I have had chronic, systemic tenosinovitus much of my adult life -- hands, feet, especially wrists and fingers.  Recently it spread to my arms and knees. 

 

I find use of steroids makes it worse -- whether prednisone for sinus inflammation or topical steroids, such as Clobex, applied lightly,  for skin issues, any use brings out more tendon pain.

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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