Diagnosed With Severe Gluten Sensitivity And Suffer Muscle Weakness And Joint Pain

[labsr4me2]

I was tested almost a year ago and told I have severe gluten sensitivity and a list of other foods to avoid (takes up a whole front page of paper).

I do fine when I avoid all of these foods. However it is difficult at times to follow so many restrictions. I have done it and every once in a while I slip up and eat with the family. At the beginining I would suffer stomach aches, headaches, dizziness, weak muscles, tiredness, and joint pain. This would last any where from a couple days to a week. (depending on how much "contamination" I had).

On friday I gave in and ate with the family (it had been months since I had cheated). I have been down for six days now. My joints are all hurting so bad that it is sometimes (most of the time) hard to walk. I am so weak right now that it is too hard to lift more than five pounds. None of these symptoms are getting any better. :-(

Has anyone else suffered from this? Does it get better or will it get worse?

Thanks for any help you can offer.

[ravenwoodglass]

You have to stop cheating. This isn't a diet that you can take a day off from, as you are finding out. You have reactivated the antibodies and your body is telling you in no uncertain terms that it doesn't want you to do it again. For me the problems you are having from being glutened last about 3 weeks. I hope it doesn't last that long for you. I find asprin to be helpful, I take St Josephs baby asprin at an adult dose. It can help with the inflammation that is causing your pain. Other than that long hot showers or baths give some relief. I hope your reaction ends soon.

[labsr4me2]

You have to stop cheating. This isn't a diet that you can take a day off from, as you are finding out. You have reactivated the antibodies and your body is telling you in no uncertain terms that it doesn't want you to do it again. For me the problems you are having from being glutened last about 3 weeks. I hope it doesn't last that long for you. I find asprin to be helpful, I take St Josephs baby asprin at an adult dose. It can help with the inflammation that is causing your pain. Other than that long hot showers or baths give some relief. I hope your reaction ends soon.

Thank you. The times have been getting longer with each "cheat." I was worried that it was something more because I had never heard of anybody else with these issues.

How long have you had this problem? Do you have celiacs or sensitivity?

Thanks again. I need to get a stronger will power!

[Lynayah]

Yes, I know how it feels, and I am happy to say that there is another side to it. It's called feeling good again.

Nothing tastes as good as pain-free feels. Go with the gluten-free plan -- you can do it!

[ravenwoodglass]

Thank you. The times have been getting longer with each "cheat." I was worried that it was something more because I had never heard of anybody else with these issues.

How long have you had this problem? Do you have celiacs or sensitivity?

Thanks again. I need to get a stronger will power!

I was firmly diagnosed celiac 7 years ago. After getting gene testing done 5 years post celiac diagnosis I was found to have two genes that many would consider gluten intolerance genes but my doctors still consider me celiac. Prediagnosis I was thought to have fibro that was causing the muscle pain and arthritis with the joint pain and swelling and was thought to have MS for quite a while. My issues resolved within a few months gluten-free but reappear if I get glutened. I had joint and muscle pain from childhood that got progressively worse as the years went on. It took over 40 years for me to get an accurate diagnosis. I am glad for you that you got a diagnosis relatively early on. Do get stricter on the diet unless you want to end up with a signature line like mine.

[labsr4me2]

I was firmly diagnosed celiac 7 years ago. After getting gene testing done 5 years post celiac diagnosis I was found to have two genes that many would consider gluten intolerance genes but my doctors still consider me celiac. Prediagnosis I was thought to have fibro that was causing the muscle pain and arthritis with the joint pain and swelling and was thought to have MS for quite a while. My issues resolved within a few months gluten-free but reappear if I get glutened. I had joint and muscle pain from childhood that got progressively worse as the years went on. It took over 40 years for me to get an accurate diagnosis. I am glad for you that you got a diagnosis relatively early on. Do get stricter on the diet unless you want to end up with a signature line like mine.

Thank you to both of you. As scary as it is to give up on the eating/socail live style that I have had for 35 years, I am going to be a LOT better at sticking with it now. The out come of it possibly not reversing itself after time is a LOT scarier. Thanks again.

Wish me luck! :-)

Again.....I am glad to know I am not the only one out there.

[Lynayah]

Thank you to both of you. As scary as it is to give up on the eating/socail live style that I have had for 35 years, I am going to be a LOT better at sticking with it now. The out come of it possibly not reversing itself after time is a LOT scarier. Thanks again.

Wish me luck! :-)

Again.....I am glad to know I am not the only one out there.

Depravation isn't cool. It might help to try new recipes or purchase some gluten-free items that help you feel like you're part of the group . . . and have them ready for the next time you might want to cave in and eat what the family is eating.

What are your biggest weaknesses and what can you purchase / make that will give you similar satisfaction?

Two things that are helping me a lot right now:

1- Letting people know that they shouldn't feel bad if I bring my own food to a get-together at their house. When I explain to them that I am so sensitive that I even have to have a dedicated can opener, their eyes pop open and they begin to understand. I ask them to PLEASE not try to do anything for me, and I explain that the risk of cross contamination is just too great . . . however, if they'd like to pour me a glass of wine, fine! I let them know that what really matters is being with them. Then I bring whatever I want and enjoy the heck out of it.

2- Talking restaurants that are not certified gluten-free into letting me bring my own food. I nicely let them know that they will have a table full of people if I can bring my own food . . . if not, we'll have to go elsewhere.

So far, I have had only one restaurant say no to me.

It helps to fit the food to the restaurant. If we go out for Mexican, I bring my own Mexican.

As odd as it sounds: There is something very liberating about going with the gluten-free flow and not trying to fit in by eating like everyone else. It takes some pre-planning, but it is worth it.

Two things happen: First, you can relax knowing that you can eat what you want without having to worry about getting sick. Second, those around you will take your gluten-intolorance more seriously and respect your needs.

Right now, I'm eating mostly whole foods only . . . however, I'm going to a family pizza / holiday cookie party in a couple weeks. I'm going to forget about my diet that night and buy a good gluten-free pizza, make it at home and bring it along. And for dessert? You guessed it, gluten-free cookies. I'll still be part of the group, but while being my own best friend.

Okay, my rah-rah session aside: Have your symptoms started to improve yet? Just a little? Hope so.

[labsr4me2]

Depravation isn't cool. It might help to try new recipes or purchase some gluten-free items that help you feel like you're part of the group . . . and have them ready for the next time you might want to cave in and eat what the family is eating.

What are your biggest weaknesses and what can you purchase / make that will give you similar satisfaction?

Two things that are helping me a lot right now:

1- Letting people know that they shouldn't feel bad if I bring my own food to a get-together at their house. When I explain to them that I am so sensitive that I even have to have a dedicated can opener, their eyes pop open and they begin to understand. I ask them to PLEASE not try to do anything for me, and I explain that the risk of cross contamination is just too great . . . however, if they'd like to pour me a glass of wine, fine! I let them know that what really matters is being with them. Then I bring whatever I want and enjoy the heck out of it.

2- Talking restaurants that are not certified gluten-free into letting me bring my own food. I nicely let them know that they will have a table full of people if I can bring my own food . . . if not, we'll have to go elsewhere.

So far, I have had only one restaurant say no to me.

It helps to fit the food to the restaurant. If we go out for Mexican, I bring my own Mexican.

As odd as it sounds: There is something very liberating about going with the gluten-free flow and not trying to fit in by eating like everyone else. It takes some pre-planning, but it is worth it.

Two things happen: First, you can relax knowing that you can eat what you want without having to worry about getting sick. Second, those around you will take your gluten-intolorance more seriously and respect your needs.

Right now, I'm eating mostly whole foods only . . . however, I'm going to a family pizza / holiday cookie party in a couple weeks. I'm going to forget about my diet that night and buy a good gluten-free pizza, make it at home and bring it along. And for dessert? You guessed it, gluten-free cookies. I'll still be part of the group, but while being my own best friend.

Okay, my rah-rah session aside: Have your symptoms started to improve yet? Just a little? Hope so.

Thank you. My symptoms have improved. I still have weakness and I am going on day five of insomnia. :-( However, the joint pain is pretty much gone now. Thank goodness.

My mom is my hardest one to be around. She makes a big deal out of bringing my own food, etc. I have not tried going out to friends houses yet.

Along with the gluten problem....I must also avoid: String Cheese

Chicken

Oyster

Gluten

Adzuki bean

Cornish Hen

Pollack

Teff

Black Bean

Duck

Shrimp

Wheat (not gluten-free)

Black eye pea

Partridge

Barley malt

Borage Seed

Garbanzo

Quail

Cinnamon

Castor Oil

Lentil

Squirrel

Dextrose

Coconut

Mung

Bacon/Ham

Gelatin plain

Corn oil

Pinto

Pork

Guarana

Cottonseed

Soy bean

Goose

Maltodextrin

Peanut oil

Soy cheese

Grouse

Soy Sauce

Safflower

Soy-miso

Anchovy

Sucanat

Sesame

Cashew

Bass

Barley (not gluten-free)

Soy oil

Peanut

Clam/Conch

Buckwheat (Kasha)

Sunflower

Pine nut

Crab/Eel

Corn (ALL)

Canola

Pistachio

Frog

Kamut (not gluten-free)

Almond Extract

Poppy

Lobster

Popcorn Aspartame

Safflower

Mollusks

Rye (not gluten-free)

Carrageen

Sesame

Mussels

Soba (may contain gluten)

Corn Syrup

Sunflower

Octopus

Couscous (not gluten-free)

Guar Gum Tomato Tofu Pumpkin

Ketchup

MSG

Pepper, black & white

Allspice

Avocado

Bitter Melon

Persimmon

Pomegranate

Coconut Milk

Prickly Pear

Starfruit

Soda

Duck Egg

Goose Egg

Ice Cream

Quail Egg

Salmon roe

American cheese

Blue cheese

Arabic gun

Aloe

Olives-green & black

Radish

Rhubarb

Juniper

So finding new foods and recipes is still a bit of a challenge. :-(

I did bring my own food to Thanksgiving and that worked out ok after I stood my ground. I will be making a ALL gluten free dinner for the whole family this year and have asked for not food to be brought in. I am excited about that. I get to show everyone how my food tastes just like theirs and I will not have to worry about cross contamination. :-)

My sister has recently (two weeks ago) been told to avoid all the same foods as me as well. So she is starting to understand. It helps to have another support team member.

My biggest weaknesses right now are cookies, desserts mostly, burgers and onion rings..........

Thank you for all of your advice. I really appreciate it. Sometimes this new life style gets a little over whelming.

[DownWithGluten]

Oh Lord, I could barely even finish that list. What do you eat then, beef?

Not trying to emphasize how difficult it must be for you but, dang. I get bitter enough from time to time with the gluten restriction. But then you have so much more, plus it seems so arbitrary (I mean quail? Octopus? String cheese?). God's speed to you!! :/

[labsr4me2]

Oh Lord, I could barely even finish that list. What do you eat then, beef?

Not trying to emphasize how difficult it must be for you but, dang. I get bitter enough from time to time with the gluten restriction. But then you have so much more, plus it seems so arbitrary (I mean quail? Octopus? String cheese?). God's speed to you!! :/

Thanks.

I eat salads (LOTS of raw fruits and veggies, beef, buffalo, salmon and turkey). I am pretty much eating the same things almost daily. I sometimes throw an egg in. LOL :-)

[ravenwoodglass]

Thanks.

I eat salads (LOTS of raw fruits and veggies, beef, buffalo, salmon and turkey). I am pretty much eating the same things almost daily. I sometimes throw an egg in. LOL :-)

Was your food allergy testing done around the same time or before you were diagnosed celiac? I had allergy testing done right before I was diagnosed. I was allergic to 98 of the 99 things that the doctor tested me for. The longer I have been gluten-free the less allergies I have. I am now down to 3. You may want to consider retesting some of the foods you reacted to after you have healed for a bit. You may be able to add a lot of them back in eventually.

[labsr4me2]

Was your food allergy testing done around the same time or before you were diagnosed celiac? I had allergy testing done right before I was diagnosed. I was allergic to 98 of the 99 things that the doctor tested me for. The longer I have been gluten-free the less allergies I have. I am now down to 3. You may want to consider retesting some of the foods you reacted to after you have healed for a bit. You may be able to add a lot of them back in eventually.

I was tested both (before or during) and then again months later.

[jackay]

How were you tested for these foods?

I was tested 1 1/2 years ago for food and chemical sensitivities. The company that did this test claimed the results are 80% accurate. I tested extremely sensitive to apples, beets, beet sugar, safflower, sorbic acid, yellow #5, fluoride and orris root. I tested moderately sensitive to many more things and mildly sensitive to lots more. I went on a rotation diet where I ate certain foods and rotated what I ate every day for four days and then started over again. I avoided everything that I tested sensitive to. I know I was still absorbing some flouride (and chlorine which I tested moderately to) by bathing and washing hands but I make sure I only drink filtered water.

I gradually started feelilng a bit better but at six months I crashed. I became very anxious, insomnia got worse and I had such sever muscle pain in my back that I spent a lot of time just lying on ice packs. Months later I found out I had hyperparathyroidism. I had surgery for that and was expecting to gradually feel better. That didn't happen.

This past summer, saliva tests were positive to casein, soy protein, egg, and gliadin. The blood tests from the year before showed no reaction to gluten or gliadin, casein, soy or eggs. I wonder if the blood tests from the summer before were accurate or if the hyperparathyroidism wore my system down so much that I became more sensitive.

I am feeling a little better now that I am no longer eating gluten, soy, dairy or eggs but have a long way to go to be healthy. My doctor didn't mention anything to me about hidden gluten so I have just recently made an effort to cut out hidden or contaminated sources. That is hard to do when living with someone who relies heavily on gluten.

I was also told that if I eat too much of any one food that I would most likely become sensitive to that, too. Anyone care to comment on that? If that is the case, I am now also sensitive to brown rice and olive oil as they are my staples.

What is a good way to be tested for food intolerances?

[labsr4me2]

How were you tested for these foods?

I was tested 1 1/2 years ago for food and chemical sensitivities. The company that did this test claimed the results are 80% accurate. I tested extremely sensitive to apples, beets, beet sugar, safflower, sorbic acid, yellow #5, fluoride and orris root. I tested moderately sensitive to many more things and mildly sensitive to lots more. I went on a rotation diet where I ate certain foods and rotated what I ate every day for four days and then started over again. I avoided everything that I tested sensitive to. I know I was still absorbing some flouride (and chlorine which I tested moderately to) by bathing and washing hands but I make sure I only drink filtered water.

I gradually started feelilng a bit better but at six months I crashed. I became very anxious, insomnia got worse and I had such sever muscle pain in my back that I spent a lot of time just lying on ice packs. Months later I found out I had hyperparathyroidism. I had surgery for that and was expecting to gradually feel better. That didn't happen.

This past summer, saliva tests were positive to casein, soy protein, egg, and gliadin. The blood tests from the year before showed no reaction to gluten or gliadin, casein, soy or eggs. I wonder if the blood tests from the summer before were accurate or if the hyperparathyroidism wore my system down so much that I became more sensitive.

I am feeling a little better now that I am no longer eating gluten, soy, dairy or eggs but have a long way to go to be healthy. My doctor didn't mention anything to me about hidden gluten so I have just recently made an effort to cut out hidden or contaminated sources. That is hard to do when living with someone who relies heavily on gluten.

I was also told that if I eat too much of any one food that I would most likely become sensitive to that, too. Anyone care to comment on that? If that is the case, I am now also sensitive to brown rice and olive oil as they are my staples.

What is a good way to be tested for food intolerances?

I was tested and had a smaller list that was just sensitivities. I did the rotation diet, avoided ALL gluten and still was getting sick. (not as bad but still sick). So this summer I was tested again and I was told to avoid all of these other foods (I was basically told to go on the eat for your blood type diet). I followed that for months now. Now if I DO eat one of those items I instantly feel sick. (even if I eat one without knowing). :-(