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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Joint Pain
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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

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I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Join pain, definitely a problem. Hands and feet are the worst (sometimes I even avoid walking), then hips and occasionally a shoulder. No popping and only very mild swelling, though.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Lgood, Your not alone... I've suffered with shoulder, neck, arm, wrist, hand, knee, leg, foot, jaw and finger pain.... I've complained about finger pain for years... It felt like I had 10 thumbs instead of 2... I had a MRI of my shoulder and nothing stood out as a problem...My shoulder bothered me since I was in my 20s and that pain went down to 10% since going gluten-free.... I still have other issues that I'm dealing with, but life is much better then a year ago....
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I get migratory deep stinging pains in my joints, but also loose joints. My right knee is shot, sometimes I can hardly walk. Also I get a lot of joint grinding. At its worst, my joints would crack hundreds of times per day (no joke), along with muscle twitching all over

Gluten tests are tomorrow....so we will see if this is the reason why

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Last night got so bad, I thought I was going to end up going to the hospital. Today I'm back to normal. I VOW to be more diligent in reading labels!

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I experience joint pain mainly in my hip, knee, and shoulder. It hurts a lot worse after getting glutened. I also experience loud popping joints. I sound about 90 years old. I suffered terrible TMJ and even have a stupid $200 mouthguard for it but I've noticed now that when I go long stretches without being contaminated it goes away!

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Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

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Thank you for the information on silica. Over the past year and a half I have been trying all sorts of mainly physical means to relieve chronic right inner "chicken wing" pain in my right upper back (worse when glutened)- stretching, exercising, yoga, ice packs, massage, rolling on an egg shaped rock (very effective), a new bed and mattress, and ibuprofen, as well as other supplements, but never heard of slicia. Thanks again. :)

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I don't know if you'll see this, but could you tell me what is msm?

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I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

Your knee pain sounds kind of like mine. My left knee has been hurting for over a year now, and my right for over 6 months. I have tried everything for it and nothing has touched the pain, and I've seen many different doctors who've all eventually said that I shouldn't still be in pain, but they don't know how to help me so they've let me go. But I also different types of pain, in different locations, and at seemingly random times. I'm really hoping that going gluten-free will be the answer. I've only been off gluten for only 6 days, and so far I really haven't seen any improvement. I'm hoping maybe the knees will just take longer to see improvement, even though my stomach symptoms are already doing better.

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I don't know if you'll see this, but could you tell me what is msm?

MSM stands for methylsulfonymethane. It's reported to act as an anti-inflammatory, but its effectiveness is still debated. MSM is often added to those glucosamine and chondroitin joint supplements. Wiki has a pretty good summary if you're looking for more (I had to check it again; been a while since I've looked into that).

Are you looking into taking those supplements?

I tried Osteo Bi-Flex for about 2 months (January through Feb of this year before I went gluten-free). It didn't seem too effective on my chondromalacia and other patella symptoms and I ended up having more stomach pain from it. It aggravated the damage a month-long high-dose regimen of ibuprofen did to my stomach. However, I know a lot of people who swear by it. For the record, most of them are over 50 and I'm only 20 so it could have been a different problem.

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My doctor pushes fish oil. I do think my joints feel better from it. Could be the placebo effect. I don't have pain unless I actually get into gluten. Normal every day is fine.

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Wow, this all sounds a lot like fibromyalgia pain. Suppose it could all be related??? My general body aches and joint pain and brain fog are definitely less when I am vigilant about staying gluten free. I made a few more changes at home, including my own, labeled peanut butter jar and butter tub, which has helped.

Yolo, what brand of silica do you use? I'd like to try that. It would probably help with peeling, splitting fingernails too. There is an excellent discussion about nail problem on the board, too.

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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

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I think I'd like to try silica, as I have joint and back pain, too. I also have plantarfaciitis in both feet, and yesterday, after having been on my feet for a whopping couple of hours :rolleyes: , not only were my feet killing me but my hip, knee, and ankle joints were, as well. and the bones in my feet. Ugh. I try to stay away from drugs as much as I can, but last night before bed I gave in and took Tylenol.

Maybe silica would help. Btw, how much do you take, and how often? Do you just follow the directions on the bottle?

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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Yes, BIG TIME. Feet, hips, hands and lower back are particularly intense.

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Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

Bea, thank you!

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Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

Hi Beth and all,

I am glad my experience interests you. The following will I hope answer most of your questions.

Horsetail just might work--it does have tons of silica in it. I have no idea how much to take--so I suggest trying trial and error and see if its enough help\. I would stay away from oatstraw if it is related to the wheat family. Is it?? Or is it just coincidental about the name?

Silica drops are pretty natural however. The bottle says just take x no. of drops a day (it varies depending on the brand). I have been taking twice the recommended amount, i.e., I take the regular amount twice a day. Graeme just follows the directions and it seems to be working for him, so I may be overdoing it. I think I should drop the dosage down probably. I just was so anxious at first to have more minerals due to this problem having been so long term for me.

The msm I think is also important, at least for me. As is the E-zorb for the calcium (I get it from Elixer Industries out of L.A.--just Google it and you will find it with lots of info about it. The Chinese invented it some years ago due to 20% of their population having a real a problem with poor calcium absorption). I have noticed a real negative difference when I go off of it after a couple of weeks or so and just use the calcium citrate instead. Many folks with celiac do not need the E-zorb. I have had celiac my whole life however and was put back onto gluten when I was four years old -- so its a very long term situation I have been dealing with and no doubt I have some semi permanent scarring despite all the enzymes and fibronylitic agents I take like nattokinase.

Besides my bones, hair, nails, teeth and collagen having been negatively impacted, lack of sufficient minerals also seem to have been very hard on my nervous system. Now people remark how calm I am. If I get glutened however I often get migraines and can easily become very irritable and mentally confused and out of it.

I also seem to need to take magnesium citrate. I just use the powder from Now. Otherwise I still get constipated. It is also supposed to help with all kinds of enzymatic processes in the body and helps balance the calcium. Historically I have also been taking Concentrace Trace Mineral drops for some years to help with my electrolyte balance which otherwise is off and too low. I just ordered a new kind of trace minerals however online.

I also eat a lot of home made yogurt I ferment for 24 hours in order to get more calcium while avoiding the lactose which I still seem to be allergic to. In addition the casein in the yogurt is also great for repopulating good bacteria in the gut -- plus I was reading the casein (in the yogurt) helps with the body producing its own co-Q10 and thus mitochondrial energy production (assuming of course you are not allergic to the casein of course!). This is important particularly as one ages I have discovered.

As far as where I get a lot of my other supplements, I often order them through herbs-pro. The prices are often inexpensive compared to store bought at least, esp. if I make a largish order. I tend to favor NOW products due to them being mostly gluten free (gluten-free). Country Life is as I said good for the co-enzyme B's. They are also gluten-free. Can't say if you all can tolerate them but they are fine for both me and Graeme--and Graeme had trouble with many B vitamin brands. There is some soy Lecithin in them however which could be a problem for some. I couldn't handle the sorbitol that the sublingual B's usually have.

If you can't take B vitamins, I suggest you eat a lot of chicken liver or calves liver and have more fermented food if you can tolerate it. I hear home made sauerkraut is very healing and helpful. You can make a version that is just inoculated with yogurt or acidophilous. If you can tolerate braggs apple cider vinegar that may help too.

In addition, as far as all this goes (concerning fibromyalgia like symptoms), I find having freshly blended (made in my blender in other words) vegetables as a pick me up. I remember a biologist (who massively resurrected her health after being allergic to almost everything) say that taking fresh uncooked chlorophyll like that is like getting a blood transfusion. It helps regulate all kinds of systems as well as gives extra energy and cleanses the blood. Juicing is nice too, but the blended veggies also give us the roughage we need. I find blended vegies also helps me get over any CC problems from gluten I might have faster--along with the yogurt and things like bromelain/papain caps (or eat fresh pineapple and papaya) and detox tea (I have talked about detox tea endlessly elsewhere, just do a search on it here).

Hope all this helps. It amazes me how all this stuff I thought was just me and my own peculiarities are not actually that uncommon!

Bea

PS--Beth I am thinking of starting some kind of support group one of these days when I have a little more time. Maybe we should talk sometime? And yes I love herbs too. Couldn't do without them...

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Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

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Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

Beth,

I just looked up oatstraw and it is part of the oat plant. I personally wouldn't touch it. Years ago I tried using oats as a kind of sedative to help me sleep at night. After a few months of this I ended up getting the shakes as well as worsened health in general. Out of that experience I eventually figured out that I had celiac from reading the Merck Manual and then going off most gluten for three months (after which my fingernails and teeth got a little stronger--which I took as a sign I did probably have it), although I didn't realize the full extent of it. The shaking scared me.

Unfortunately Kaiser was of no help even though I told them my suspicions--even after I had a frozen shoulder etc. later on. 4 years ago or so my nerves were diagnosed by an alternative doctor (from blood lipid tests) as only having 50% of the usual thickness of the myelin sheath on them. Fortunately the co-enzyme B vitamins helped counteract some of the worst problems from that (racing heart etc.). But going off all trace glutens did most of the rest--though as said the extra minerals (and oils) were also really needed.

I have had to be a health sleuth--and have actually gotten pretty good at it. Its for this reason I want to become some kind of healer...which I am working on developing these days.

Bea

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Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

I don't have much joint pain from glutening, but my boss is so sensitive that he has had to call in sick a couple of times due to the joint pain and swelling after being glutened. The last time (that I know of) he had three bites of mole sauce at a Mexican restaurant, then someone told him the waiter had been wrong and they used flour not corn starch. He said he couldn't even get out of bed by the next morning. I guess his wife is even more sensitive than he and also gets severe joint pain. Gluten is an inflammatory agent, and RA doctors that are current on their journals and open to the idea of dietary agents affecting health often put their RA patients on a gluten, casein, nightshade, and sometimes soy free diet right out the gate. There are a couple people where I work who are on a similar diet and their arthritic pain has been eliminated in one case, and incredibly reduced in another.

* Edited for clarity.

Edited by Korwyn
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I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Hi, Bea!

For ease of reference: Would you mind indulging an attention-challenged, brain-fogged "old lady" and list every supplement you speak of here, with the brand name next to it?

ABC Multi - Funforyou Labs

DEF Calcium - Horsepills, Inc.

Oh, that would be so very much appreciated. Please feel free to add any additional supplements you use that may not have been mentioned here. THANK YOU MY FRIEND!

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    • Hi,  I am very sorry for posting back again. I have visited the consultant today and he said that the TTG is mildly elevated - does this mean it is a positive? The consultant said that as I tested negative for Celiac on three previous times, he thinks something else could be going on so came home worrying even more. The consultant has organised an endoscopy and requested it as a fast track and requested an urgent CT scan.  I was wondering if there is anything that I can do to best prepare for the endoscopy? Does my gluten amount seem to be enough with the 2 slices of bread on a morning? Is it also possible for the TTG to have become mildly elevated because of other conditions?  He mentioned to me that the colonoscopy didn't work really because of how it was clogged up and that the bowel prep didn't work.  I have also noticed that I am experiencing major constipation as well - I will have diarrhoea then it will fluctuate to constipation as well and have an awful gurgling sensation as soon as I eat anything like bread.  Thank you again for everyone on here. It is a wonderful forum. 
    • Hey y'all so I realized my allergy medicine probably affected the results of the IgE allergy blood tests. I tried to start eating gluten again so that I would be able to get the full blood panel from my GI but I can't do it. I ate two meals with gluten yesterday and ended up spending half the night in the bathroom throwing up because my body couldn't digest any of it. Do you know if there are any other ways a GI could diagnose possible celiac without me having to consume it?
    • Hi guys! I'm newly diagnosed (just over a month ago) and before my diagnosis booked a trip to Nepal and Tibet - both of which are bound to be super NOT gluten free and likely not gluten aware.  I know when travelling elsewhere it is recommended to get fresh produce etc from the grocery store and bring your own food. However, grocery store shopping will be next to impossible (in Tibet especially - I will be on a small tour driving through some very remote places!) and though Nepal may be slightly easier, I think it will be a challenge. I am fine to bring my own staples but note this trip is backpacking style and I will have barely enough room for (non-food) necessities so I unfortunately cannot bring an extra suitcase filled with food. I also doubt I will have access to microwaves for the Tibet portion of the trip. Can anyone offer the following advice: - have any of you traveled to these places or somewhere similar and how did you manage? - with limited space what would be the best staples to bring/what will stretch the farthest but take up the least space (I'm thinking a big bag of gluten-free oats? should be easy to get boiling water in most places) - CC issue is gonna be huge but what do you think is the safest bet to eat in this part of the world? Should I just live off steamed rice for the two weeks and take lots of vitamins and hope I can survive with the lack of nutrients? I'll try and add safe fruit and veg at every chance I get obviously.. (Note: fresh veggies are very scarce in Tibet - main diet it dumplings/momos, rice and yak meat - I assume the meat has a high chance of being marinated in unsafe soy sauce) - are there any pills/supplements/natural remedies to help me cope if I do get glutened (which is likely)? I heard of GliadinX - anyone have success with this? Also thinking maybe this would be a good time to invest in a Nima? Thank you so much! Any advice will be really helpful! (Also, please no comments on how I should cancel the trip, how getting glutened once will re-damage my intestines, how I should pack less clothes to fit more safe food etc! I know there is no beating Celiac and all the crappy consequences to eating gluten (I've been addicted to this website since getting diagnosed and have learned so much from you guys!) and that this is probably the worst vacation for a celiac lol. But this trip has been a life dream of mine and we actually booked it in lieu of having a wedding so for this reason I can't (won't) cancel it  I know I'm taking a huge risk and many would disagree with my decision but please positive comments on how I can be best prepared and reduce the risk/reduce the symptoms will be really appreciated!) Thanks Jes  
    • Hello. Been a while since I've been here. Not that I am necessarily better. But you've (the great peeps on this forum !  have been incredibly helpful and I know how to cope better, and I've made positive changes in mine and my daughter's lives. So, as you can see I am writing to ask you about this new EVIL I've just recently discovered is a neruo toxin, used often in frozen sea foods: Sodium triphosphate. For example; I've been eating frozen fish with gluten-free herbs and spices, added veggies for years and also frozen shrimp with hot butter and garlic. YUM! With no *apparent* side effects. I am not sure anymore...A few days ago, I had good serving of shrimp and the usual, butter with fresh garlic and a bowl of green leaf salad with olive oil and Himalayan salt and again garlic lol (a big fan of garlic here ) . Within an hour of eating, my abdomen was so bloated. I looked like I was pregnant and in my second trimester  . Wow! ...Ok, I thought to myself: WHAT did I ingest with gluten or milk, that could be the cause for this?...Everything seemed ok, over the last few days. So I had to read the ingredients of this shrimp. I guess something like instinct told me to do it. And BAM, I came across that thing: Shrimp, water, Sodium triphosphate. I did some searching online and did not find too much except that 'The United States Food and Drug Administration lists STPP as "generally recognized as safe." '  https://en.wikipedia.org/wiki/Sodium_triphosphate   THIS means very little to me personally. NOT reassuring at all.  I found something which DID scare me: " Even though deemed safe for ingestion, this is one chemical you want to avoid if you've experienced reactions due to eating frozen fish.  Check for seafood products labeled as "dry" which means they have not been contaminated with the chemical.  Food products labeled as "wet" have usually been treated with sodium tripolyphosphate.

      STPP, is a suspected neurotoxin according to the National Institute for Occupational Safety and Health’s (NIOSH) Registry of Toxic Effects of Chemical Substances. Food-grade STPP may cause acute
      skin irritation, and prolonged contact with skin should be avoided. STPP  is listed on the U.S. Environmental 
      Protection Agency’s Federal  Insecticide, Fungicide and Rodenticide Act as a registered pesticide and  it is also registered as an air contaminant under California’s  Occupational and Safety Health Act. The material safety data sheet lists STPP as toxic to the lungs with prolonged exposure having the potential to produce organ damage.  This neuro toxin also has the ability to cause internal inflammation from those suffering from autoimmune diseases.  Inflammation leads to painful flare-ups."   From this site: http://www.yourfibrosupport.com/fibro-relief-blog/side-effects-of-frozen-seafoodtreated-withsodium-tripolyphosphate It seems that there is one more evil to avoid. It's very hard to eat healthy, when you are on disability. It really is upsetting that even frozen fish which some of them I actually CAN afford, now are off the menu. The list just keeps getting smaller. I would like to point out that I have Candida, so it also means I can't eat things like Lentils or beans and the other gluten-free grains by the bucketfuls. I need to maintain a Paleo type diet. So, that's not cheap. We always have a lot of eggs at home and tuna and what meat I can afford, what is on sale, etc.   Been considering looking into free range meats and so on but that's not cheap. So, if I go that route, I'd have to split it with a person or two and probably buy a large freezer. Oh god. Just thinking aloud here...   I'd really appreciate any and all comments and suggestions.  Thanks very much for being so kind, L. 
    • I workout, but with lighter weight than normal. I never go to failure. But being tired is not one my symptoms.    
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