Need Help.

[TomC]

Hello everyone, I am so happy I found this forum. Basically I need help in understanding the gluten free lifestyle and some emotional support.

I have been struggling with mysterious joint pains for six months, off and on. I am (or was) a bodybuilder. My life was dedicated to weight lifting, it was my number one hobby that made me LOVE life. Anytime something hurt, I just assumed it was from weight lifting and I would focus more on my form.

Then I started to have digestive problems. One day, out of the blue, I was lactose intolerant.

To make a long story short, I had blood work done, and my doctor suspected celiac disease but the test came out negative.

My bloating and indigestion continued. So I went on a crazy elimination diet. For three weeks I was gluten free...Without realizing it. I just ate meat and veggies. My stomach problems improved and my joint pain-which I had thought was caused my lifting weights and my hand pain which I thought was from computer typing- went away totally 100%.

After the fourth week I decided to include grains. and boy did I....I ate a subway sandwich everyday for lunch and had oatmeal for breakfast. My joint pain came back right away. So I stopped gluten about 4 days ago but my shoulders are on fire. I'm scared I've done damage to my joints, especially my shoulders.

I also have read that people with gluten sensitivity have a good chance of getting RA arthritis! wow, my life is totally ruined if I have this. I have to see the RA specialist soon but I don't have hope.

Does any of this sound like celiac disease or just arthritis?

[TomC]

If someone has gluten sensitivity or celiac disease, and they go gluten free for a few weeks like I did, and then return to a gluten filled diet for a whole week, would the symptoms come back twice as hard? I have had minor joint pain for months but when I went gluten free, it all went away but when I added gluten, the joint pain came three times worse and is lasting much longer. Plus I have had to run to the restroom atleast three times a day ! I went 4 days so far without gluten and my shoulders are still not totally better. I am already on die 5. Hoping for relief!

I believe I have something called leaky gut syndrome which led to being gluten sensitive (or did being gluten sensitive lead to leaky gut?). I don't know if Leaky gut is a real condition but my symptoms fit pretty well and my diet was full of gluten, casein, and sugar plus lots of stress which is bad for the gut.

[Christine0125]

I get muscle aches but not joint pain but there are such a wide range of symptoms. Good luck getting answers.

[pricklypear1971]

Well, if you got a full Celiac panel run and you were on a glutenous diet, and we're negative but feel better off gluten then there's a high probability you have a gluten problem .

Yes, there could have been false negatives, or you could be iga deficient, or they could have not run all the tests...

But what you're describing is a classic gluten reaction. Having worse gluten reactions than previous reactions while on challenge is a classic reaction.

You probably do have a leaky gut. I think they argue daily which comes first - but the bottom line is its probably there. Try probiotics and digestive enzymes and naturally fermented foods. Some people try specialized diets like GAPS.

Don't assume you have RA. Autoimmune issues come with a fair amount of inflammation, so you may have RA type symptoms but not RA. Give your body time to recover from that massive glutening you gave it before you panic.

So, to sum up. You may or may not me Celiac but you do have a problem with gluten. You may be NCGI.

Don't eat anymore gluten.

Learn about living gluten-free and ask lots of questions.

And breathe. Slowly.

[TomC]

I get muscle aches but not joint pain but there are such a wide range of symptoms. Good luck getting answers.

Interesting. Well the first few days after eating gluten filled meals my shoulders felt out of place..Like if I moved the wrong way they might snap. After about the 3rd day they just felt on fire...like a burning feeling, very uncomfortable but I wouldn't consider it painful. Now that burning and aching sort of moved away from the shoulder and onto my trap muscles and part of my lower neck. It's pretty strange. My hand inflammation seemed to mostly clear up in about three days away from gluten.

I had one blood test for celiac disease months ago that was negative. I had another one two days ago because the doctor thought I should do it while I had a flare up. All other blood tests to check for inflammation keep coming back normal. They're talking about doing a scope test and even a colon check ! I don't know if all that is necessary but I refuse to eat more gluten.

[TomC]

Well, if you got a full Celiac panel run and you were on a glutenous diet, and we're negative but feel better off gluten then there's a high probability you have a gluten problem .

Yes, there could have been false negatives, or you could be iga deficient, or they could have not run all the tests...

But what you're describing is a classic gluten reaction. Having worse gluten reactions than previous reactions while on challenge is a classic reaction.

You probably do have a leaky gut. I think they argue daily which comes first - but the bottom line is its probably there. Try probiotics and digestive enzymes and naturally fermented foods. Some people try specialized diets like GAPS.

Don't assume you have RA. Autoimmune issues come with a fair amount of inflammation, so you may have RA type symptoms but not RA. Give your body time to recover from that massive glutening you gave it before you panic.

So, to sum up. You may or may not me Celiac but you do have a problem with gluten. You may be NCGI.

Don't eat anymore gluten.

Learn about living gluten-free and ask lots of questions.

And breathe. Slowly.

Thank you. I'm going to see a doctor in a few days that specializes in RA. I hope its not a waste of time. Some of the regular doctors I spoke to never heard of gluten causing muscle aches and joint issues. I hope the RA doc isn't just going to give me drugs since I am not in severe pain. Just overall discomfort.

Here one question I'd like to ask people that are experts in gluten free diets. Should I avoid any product that says it contains "wheat" and what about products that say "made in a facility that processes wheat".? It's been such a headache trying to know what is safe to eat.

[pricklypear1971]

Interesting. Well the first few days after eating gluten filled meals my shoulders felt out of place..Like if I moved the wrong way they might snap. After about the 3rd day they just felt on fire...like a burning feeling, very uncomfortable but I wouldn't consider it painful. Now that burning and aching sort of moved away from the shoulder and onto my trap muscles and part of my lower neck. It's pretty strange. My hand inflammation seemed to mostly clear up in about three days away from gluten.

I had one blood test for celiac disease months ago that was negative. I had another one two days ago because the doctor thought I should do it while I had a flare up. All other blood tests to check for inflammation keep coming back normal. They're talking about doing a scope test and even a colon check ! I don't know if all that is necessary but I refuse to eat more gluten.

Unless they scope you now for Celiac it's rather pointless since the antibodies fall quickly on the gluten-free diet.

You say one blood test. Just one? Do you mean one draw, several tests? If they didn't run more than one you didn't get a Celiac "panel". I suggest getting a copy of the results. Here is a listing of Celiac tests - ask for all of them on page 1 and 2. Open Original Shared Link

If you want more blood tests do it NOW. Your antibodies are falling, if you have them.

Muscle aches and cramps are unusual from gluten. Some people deal with symptoms for months after a glutening.

[TomC]

Unless they scope you now for Celiac it's rather pointless since the antibodies fall quickly on the gluten-free diet.

You say one blood test. Just one? Do you mean one draw, several tests? If they didn't run more than one you didn't get a Celiac "panel". I suggest getting a copy of the results. Here is a listing of Celiac tests - ask for all of them on page 1 and 2. Open Original Shared Link

If you want more blood tests do it NOW. Your antibodies are falling, if you have them.

Muscle aches and cramps are unusual from gluten. Some people deal with symptoms for months after a glutening.

I'm going to have to ask the doctor exactly what tests they're running. I know their was a whole list of different things to check for inflammation. One test just said something about celiac testing.

Muscle aches and cramps are unusual?

[pricklypear1971]

I'm going to have to ask the doctor exactly what tests they're running. I know their was a whole list of different things to check for inflammation. One test just said something about celiac testing.

Muscle aches and cramps are unusual?

Noooo!! Sorry, dang auto spell!!!

They are NOT unusual. I got glutened and felt like I'd been caned. Happens alot to people.

[MitziG]

Just MHO...but- I would cancel the RA appt. Chances are they know little to nothing about the gluten connection. You will be subjected to a lot of expensive tests and told you are fine and you will feel like a bozo. It is pretty clear gluten is your problem. You don't need a dr to tell you that. Now, because you went gluten-free for a bit, you allowed your immune system to recover a bit and so it is being more vocal about its dislike for gluten. You are still getting trace amounts of gluten- it is impossible not to without being vigilant about EVERYTHING you eat. I advise you to read through the info for newbies posted here and do your homework so you know what is safe. Stick with plain meat, fruit and veggies for now. Avoid seasonings and dairy for a bit. The joint pain will likely pass, but it could take a few months. Everyone is different and the healing process varies. Mastering the diet takes time as well, and you are going to make mistakes. 6 mos from now, if you still have the muscle and joint pain- reschedule your appt with the RA specialist. Right now- I think it is a waste of your time and energies. Again, JMHO. Welcome, btw.

[MitziG]

Oh, and before my dx I woke up every day feeling like I had been beat with a bag of rocks all night. Now the pain is gone, but a tiny bit of cross contamination has me aching all over for days. Even my fingers will hurt. Your cont'd pain is likely from unintentional gluten you are getting.

[pricklypear1971]

Thank you. I'm going to see a doctor in a few days that specializes in RA. I hope its not a waste of time. Some of the regular doctors I spoke to never heard of gluten causing muscle aches and joint issues. I hope the RA doc isn't just going to give me drugs since I am not in severe pain. Just overall discomfort.

Here one question I'd like to ask people that are experts in gluten free diets. Should I avoid any product that says it contains "wheat" and what about products that say "made in a facility that processes wheat".? It's been such a headache trying to know what is safe to eat.

Sorry, I missed this.

Gluten is a protein found in some grains: wheat, barley, rye, etc. Oats are glutened by association - processing, so don't eat them unless they are certified gluten-free.

If a product is marked "contains:wheat" it contains gluten. You don't know if it contains other glutenous grains like barley unless you read the rest of the label contents.

If a product is marked gluten-free, it can mean a number of things in the U.S. read this: Open Original Shared Link

Lots of naturally gluten-free foods are processed in shared facilities. Most of the time eating food processed on the same equipment is fine; however, some people are more sensitive than others and some companies are better at cleaning equipment. It's your judgement call. You'll eat more than you know because not all companies disclose that info.

This should help: https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

In the beginning, the more whole foods you stick with the better you'll be. But if you want something processed don't cheat with gluten just eat a gluten-free goodie.

Everyone has their own opinion about what tastes best. Look around your stores and see what's there. You may need to go to a Natural Market, Trader Joes, Whole Foods, etc. to find a big selection of gluten-free processed items like bread, flours, etc.

[TomC]

Thanks for the helpful responses.

Is their anything that can be done to lesson the damage. I'm on day 5 of being gluten free again, I can now feel the shoulder and neck problem going way which is confirming once again that I have a gluten problem. I now only worry about the health of shoulder. The doctor says my shoulder inflammation wasn't nearly bad enough to cause a real injury, but at this point, what do doctors know? haha.

Would supplements be helpful ?

[TomC]

I have another important question

Ever since I discovered my gluten problem, I have had problems digesting eggs. Or some kind of weird reaction to eggs. I have ate eggs my entire life without problems but lately when I eat eggs, I wake up with back pain until I finally have a bowel movement. Only till I get my BM does the pain go away.

Is it possible that my gut damage due to gluten or leaky gut is making me intolerant to eggs? And is it likely that I can someday add eggs to my diet again?

I know only time will tell for sure but I'm just wondering if this is the likely cause of the sudden egg intolerance.

[mushroom]

After going off gluten we often find we do not tolerate some other foods very well either. Some of these are temporary intolerances - lactose is almost always a temporary one - and some of them hang around. There's no way of knowing how you will respond to eggs later when you are healed. You will just have to be patient, I'm afraid.

Your shoulder may well completely recover. I have fingers, toes and other joints that were so swollen and inflamed, that clicked with bone spurs, but they all feel fine now. The body's ability to heal is amazing if we give it a chance. Glucosamine and chondroitin are still recommended for joints and probably won't hurt - may not help.

[TomC]

Interesting. Being able to eat eggs again would make my life so much easier with my meal planning and everything. I'm staying away from casein for life because I feel that contributed to my gut damage too. I really hope I could consume whey protein again, haven't really tried it out in months but I will eventually.

[MitziG]

I doubt that any damage to your shoulder or joints is permanent. People who have sufferred for many years with signifacant pain and inflammation of their joints often make a full recovery once they are completely gluten free. Supplements are not a bad idea, but don't go overboard because you are panicked. You can't force your body to recover and over-supplementation can be damaging. A good naturopathic doctor would probably give you more direction than any MD at this point. Most MD's (not all) are quick to dismiss that food can cause such havoc on the body. They are trained to treat symptoms with pills and not to look at the underlying cause. There are of course, many exceptions to this- but you can waste a lot of time and $ trying to find them!

[MitziG]

Oh, and as for egg- it is a common allergen. If it gives you noteable physical symptoms, that is your body telling you it is being harmed. Ditch the eggs for now. When you are feeling great for 6 mos' you can give it another try. In the meantime, don't be surprised if a few other food intolerances pop up. It is a common theme amongst Celiacs!

[TomC]

Thanks for that information.

I am on my 7th day of being gluten free. My shoulders feel so much better, my digestion is better too. But I am freaking out. I noticed in the last couple weeks, that when I fall asleep, just when I began to really sleep, I get this shaking feeling, like tremor shake feeling and I'm awake in my head trying to snap out of it but it takes a few seconds and then I finally wake up. This has me pretty scared that I'm coming down with someone far worse then gluten sensitivity, althought it is obvious that I am gluten sensitive. I know symptoms of gluten sensitivity come in a wide range, but can this be another symptom? I have been off gluten for 7 days now.

[squirmingitch]

Thanks for that information.

I am on my 7th day of being gluten free. My shoulders feel so much better, my digestion is better too. But I am freaking out. I noticed in the last couple weeks, that when I fall asleep, just when I began to really sleep, I get this shaking feeling, like tremor shake feeling and I'm awake in my head trying to snap out of it but it takes a few seconds and then I finally wake up. This has me pretty scared that I'm coming down with someone far worse then gluten sensitivity, althought it is obvious that I am gluten sensitive. I know symptoms of gluten sensitivity come in a wide range, but can this be another symptom? I have been off gluten for 7 days now.

Tom, that sounds like either

A) gluten withdrawal kicking in

What I refer to as non digestion --- where you actually don't have enough stomach acid. Probiotics will help that.

[pricklypear1971]

Yeah, withdrawal will make you weeeiiirrrdddd.

Lots of people notice sleep issues in the first months, from insomnia to muscle twitches.

Don't panic yet.

[TomC]

Thanks. I have been taking probitoics. They help with digestion.

I do get slight muscle twitches too. But the shaking feeling is just scary. I'm trying not to panic !

[GFinDC]

... I'm trying not to panic !

Oh Oh , get a towel! Aka Ford Fairlane in Hitchhikers Guide.

Hi Tom,

Going gluten-free causes a lot of changes in GI system. Bacteria strains change, things start healing and enzymes that were missing may start reappearing. Lots of change can equal some distress. A simple diet with no processed foods and no or low sugar can help heal your gut. It won't happen overnight though, it takes some time. After you have done a whole foods diet for a few months things should settle down. If not you may need to look at an elimination diet to detect other food intolernaces.

[TomC]

Ok, I'm on day 9 of being gluten free. My hand and shoulder pain are still improving, but my headaches are getting worse. From what I have read, some people report headaches from from with drawl. I don't want to take any drug so are their any good ways to minimize the discomfort? The headache seems to be towards the front of my head just above my eyes. Would exercise be Ok? Yesterday I had a mild workout and felt great afterwards but the headache came late at night. Went away in the morning but came back worse this afternoon.

[pricklypear1971]

Ok, I'm on day 9 of being gluten free. My hand and shoulder pain are still improving, but my headaches are getting worse. From what I have read, some people report headaches from from with drawl. I don't want to take any drug so are their any good ways to minimize the discomfort? The headache seems to be towards the front of my head just above my eyes. Would exercise be Ok? Yesterday I had a mild workout and felt great afterwards but the headache came late at night. Went away in the morning but came back worse this afternoon.

I had to take a few Tylenol during my withdrawals (mine was from a drug, actually) but it was still a part of detox. Didn't take much - just one or two for a few days.

And do anything that works to make you feel better. Seriously.