Weird Snsations And Body Aches.....

[GlutenGuy36]

I am 36 years old recently diagnosed with Celiac Disease July 14th of 2008 after feeling completely ill since October of 2007. I have been on a gluten free diet since July 14th and im sure I have inadvertenly glutened myself. I am trying to seed out all the places gluten hides, cross contamination as well.

I want to know if anyone else is sore all over their body like it hurts to move. Almost like your organs are sore. My neck has been killing me as well. I am also having strange pains on the right side of my head. It's not like a headace just feels heavy/numb.

I cannot believe that it's just Celiac Disease causing me all of this misery. I have had tons of tests done and this is the only thing they have found.

Any responses will be appreciated very much. I'm so frustrated and tired of feeling like total crap.

[ShayFL]

Did they test your vit/mins? B12? Ferritin/Iron? Folic Acid? Calcium? Magnesium?

Was your thyroid tested? Those symptoms could be low thyroid which is prevalent in Celiacs.

TSH

Free T4

Free T3

And both antibodies

TSH should be under 3 per the new guidelines. But I was SEVERELY hypothyroid with a TSH of 2.8.

Do scour for CC issues. They are easy to get. I still find them now and again even though I am ANAL about my gluten-free. 100% gluten-free household. Also, it just takes time. For some up to 2 years to feel better.

Hang in there!

[RiceGuy]

I agree about the nutrient levels. Supplementation of the ones ShayFL listed could really help a lot.

Also consider things like dairy, soy, eggs, nut, nightshades, and other common allergens. I would get all sorts of pains from nightshades. It is very common to become more sensitive to certain things for awhile, once you're gluten-free.

[YoloGx]

It is not unusual to have all kinds of body aches and pains with celiac. I certainly had them most of my life. I used to think that it was "normal" to hurt all over my body. The last of these pains finally went away last November when I went off all trace glutens even though I thought I was off gluten for over 12 years previous to that. Now it only comes back when I get inadvertently traced glutened. Even soap that had caramel color or tocopherol made from wheat germ (often found in many lotions and soaps) would do this to me. It takes a while to trace all this down. The official lists here on celiac.com helps to figure some of this out.

Often with celiac one does develop allergies or sensitivities to other things. Over time many go away though some may remain. For example I am also very allergic to many other things besides gluten--like the aforementioned tomato/potato/pepper family as well as nuts, sesame, eggs, carrots, yeast, milk products except for yogurt, all alcohol, etc. These too can make me feel pretty awful though each has its own peculiarities.

The thing is is that the crappy feeling does go away if you put attention on figuring this out and following your diet. It takes patience and persistence. However I have found its well worth the trouble, as I hope it does for you too.

Meanwhile other things can help, like occasionally taking the detox herbs dandelion or milk thistle (no tinctures however!!), cleavers or echinacea, and yellow dock or Oregon grape root--especially on the worst days. Best used as teas (boil the roots roughly 20 minutes, steep the leaves), however caps are OK too.

The soothing emollient herbs marshmallow root and slippery elm will do a great deal to restore the health of your villi, especially if taken between meals with plenty of water. Here caps work just fine. Their effect is further augmented if you also take bromelain/papain caps not just as a digestive aid with food but also between meals since this combination then acts as a fibronylitc agent that helps get rid of inflammation and scar tissue.

Taking good enterically coated acidophilus capsules also helps quite a lot since it helps restore the good flora which often get out of balance with celiac. I especially like Now's GR8.

If you have candida overgrowth, that too can make you feel pretty damn crappy. If you have it you should avoid all sugars including at first fruits, and especially dried fruits and other dried foods as well as various things that easily convert to sugar like white rice. With this condition its important to take things to kill off the excess candida or fungal overgrowth--like enterically coated oregano caps and garlic (Garlicin is good) and if you can manage it, grapefruit seed extract drops (use only 3 to 5 drops in a large glass of water). Here again the acidophilus is key to repopulating the good bacteria in your gut. FOS also helps. You can also rub thyme oil on your wrists.

I have found too that exercise can be key to getting rid of that crappy feeling even though that is the last thing you want to do at the time. The more vigorous the better, though at first you might just only feel up to going for a walk.

Other things that help are rolling around on a tennis ball to get rid of some of the worst pain, especially the lymph nodes about 3 inches below the arm pits as well as the shoulder blades etc. Small cat toy tennis balls work even better by the way... Or if you can get a massage it will really help, assuming you can handle enduring the pain...Saunas and hot baths help too...

For me one of the key things to turning this around apart from all of the above was when I discovered the virtues of taking co-enzyme B vitamins roughly two years ago. Turns out I was low on B-1 even though I had been taking B supplements for years. I need the co-enzyme variety instead in order to be able to assimilate the B-1. As it turns out without it I had Beri Beri like symptoms. My nervous system had seriously degraded and thus all the crappy pain on top of all the other reasons since without B-1 one has a hard time digesting basic proteins and carbohydrates, which in turn deteriorates the myelin sheath as well as is hard on the brain and heart etc. etc. You get the picture... After two weeks of taking the co-enzyme B's I stopped having heart palpitations and generally felt stronger than I had in years. I could also then tolerate taking a sauna or jacuzzi whereas previously I could not. I discovered taking the Country Life co-enzyme B's worked better for me than the sublinguals however since the latter often has sorbitol in them which seems to bother me.

As it turns out, I discovered since then that its difficult for most people who have celiac to metabolize B vitamins -- so in my opinion the co-enzyme B's should be useful to most since they go directly into the blood stream rather than having to go through the liver first as they do with other varieties of B vitamins.

This and other vitamin and mineral deficiencies are common with celiac, like Vitamin D (best if you can tolerate cod liver oil straight or in caps) and either calcium citrate of this product called E-zorb which seems to be the only calcium that is useful to me (I used to peel my fingernails easily etc.) and trace minerals (I like to take the liquid trace sea minerals).

And yes its true, a low thyroid can play a part. In this respect I have been fortunate not to have had that problem at least but my sisters do.

Hope some of this helps. I really sympathize since I have been there more often than I'd ever care to remember.

Bea

[GlutenGuy36]

It is not unusual to have all kinds of body aches and pains with celiac. I certainly had them most of my life. I used to think that it was "normal" to hurt all over my body. The last of these pains finally went away last November when I went off all trace glutens even though I thought I was off gluten for over 12 years previous to that. Now it only comes back when I get inadvertently traced glutened. Even soap that had caramel color or tocopherol made from wheat germ (often found in many lotions and soaps) would do this to me. It takes a while to trace all this down. The official lists here on celiac.com helps to figure some of this out.

Often with celiac one does develop allergies or sensitivities to other things. Over time many go away though some may remain. For example I am also very allergic to many other things besides gluten--like the aforementioned tomato/potato/pepper family as well as nuts, sesame, eggs, carrots, yeast, milk products except for yogurt, all alcohol, etc. These too can make me feel pretty awful though each has its own peculiarities.

The thing is is that the crappy feeling does go away if you put attention on figuring this out and following your diet. It takes patience and persistence. However I have found its well worth the trouble, as I hope it does for you too.

Meanwhile other things can help, like occasionally taking the detox herbs dandelion or milk thistle (no tinctures however!!), cleavers or echinacea, and yellow dock or Oregon grape root--especially on the worst days. Best used as teas (boil the roots roughly 20 minutes, steep the leaves), however caps are OK too.

The soothing emollient herbs marshmallow root and slippery elm will do a great deal to restore the health of your villi, especially if taken between meals with plenty of water. Here caps work just fine. Their effect is further augmented if you also take bromelain/papain caps not just as a digestive aid with food but also between meals since this combination then acts as a fibronylitc agent that helps get rid of inflammation and scar tissue.

Taking good enterically coated acidophilus capsules also helps quite a lot since it helps restore the good flora which often get out of balance with celiac. I especially like Now's GR8.

If you have candida overgrowth, that too can make you feel pretty damn crappy. If you have it you should avoid all sugars including at first fruits, and especially dried fruits and other dried foods as well as various things that easily convert to sugar like white rice. With this condition its important to take things to kill off the excess candida or fungal overgrowth--like enterically coated oregano caps and garlic (Garlicin is good) and if you can manage it, grapefruit seed extract drops (use only 3 to 5 drops in a large glass of water). Here again the acidophilus is key to repopulating the good bacteria in your gut. FOS also helps. You can also rub thyme oil on your wrists.

I have found too that exercise can be key to getting rid of that crappy feeling even though that is the last thing you want to do at the time. The more vigorous the better, though at first you might just only feel up to going for a walk.

Other things that help are rolling around on a tennis ball to get rid of some of the worst pain, especially the lymph nodes about 3 inches below the arm pits as well as the shoulder blades etc. Small cat toy tennis balls work even better by the way... Or if you can get a massage it will really help, assuming you can handle enduring the pain...Saunas and hot baths help too...

For me one of the key things to turning this around apart from all of the above was when I discovered the virtues of taking co-enzyme B vitamins roughly two years ago. Turns out I was low on B-1 even though I had been taking B supplements for years. I need the co-enzyme variety instead in order to be able to assimilate the B-1. As it turns out without it I had Beri Beri like symptoms. My nervous system had seriously degraded and thus all the crappy pain on top of all the other reasons since without B-1 one has a hard time digesting basic proteins and carbohydrates, which in turn deteriorates the myelin sheath as well as is hard on the brain and heart etc. etc. You get the picture... After two weeks of taking the co-enzyme B's I stopped having heart palpitations and generally felt stronger than I had in years. I could also then tolerate taking a sauna or jacuzzi whereas previously I could not. I discovered taking the Country Life co-enzyme B's worked better for me than the sublinguals however since the latter often has sorbitol in them which seems to bother me.

As it turns out, I discovered since then that its difficult for most people who have celiac to metabolize B vitamins -- so in my opinion the co-enzyme B's should be useful to most since they go directly into the blood stream rather than having to go through the liver first as they do with other varieties of B vitamins.

This and other vitamin and mineral deficiencies are common with celiac, like Vitamin D (best if you can tolerate cod liver oil straight or in caps) and either calcium citrate of this product called E-zorb which seems to be the only calcium that is useful to me (I used to peel my fingernails easily etc.) and trace minerals (I like to take the liquid trace sea minerals).

And yes its true, a low thyroid can play a part. In this respect I have been fortunate not to have had that problem at least but my sisters do.

Hope some of this helps. I really sympathize since I have been there more often than I'd ever care to remember.

Bea

Thanks Bea,

That was alot of useful information. I do appreciate it very much. I do have a underactive thyroid which was diagnosed before the found the Celiac 9 months later. I am on medication for it and as far as I know Im at my optimum level depending on what doctor you see. Then all see to have a different idea of the right level to be at.

My abdmianl pains have stopped for the most part. Its just the all over body aches, tinnitus (ringing ears), heart palps, fatigue etc. I'm betting on mineral difficiencies. I felt so horrible and I still dont feel well enough to hold a job down. My gastro said it can take a while to really feel better. It's just so frustrating. -Ted-

[YoloGx]

Thanks Bea,

That was alot of useful information. I do appreciate it very much. I do have a underactive thyroid which was diagnosed before the found the Celiac 9 months later. I am on medication for it and as far as I know Im at my optimum level depending on what doctor you see. Then all see to have a different idea of the right level to be at.

My abdmianl pains have stopped for the most part. Its just the all over body aches, tinnitus (ringing ears), heart palps, fatigue etc. I'm betting on mineral difficiencies. I felt so horrible and I still dont feel well enough to hold a job down. My gastro said it can take a while to really feel better. It's just so frustrating. -Ted-

Well I do hope at least some of it helps. It really should. Just hope it didn't overwhelm. I know it was a lot at once.

So, just in case you haven't had enough advice (lol!), an Internet site that might be helpful is the Wilson's Thyroid Syndrome site. Oftentimes one isn't able to adequately convert T3 from the T4 medicine they give you, which is especially needed during the cooler seasons. The herbs they have on the Wilson's Thyroid site can really help, though again no alcohol based tinctures due to them being made with grains, usually glutenous. You can call them to make sure they give you is safe.

Often times low thyroid can be created by having had untreated celiac for years. Problems with the adrenals can be part of this. Exercise helps short circuit this if you tend to be over-reactive to stress all the time. I think in part this comes from ancient times when we had to hunt for our food etc. There needs to be the exercise or we get run down and sick more than the average person... Plus the celiac creates a lot of stress in the body for obvious reasons. I have a friend this happened to. He now takes 1/2 dose of the lowest level of thyroid medicine. The vigorous exercise for him is key. He uses one of those little stair steppers you can buy at Target. If he doesn't do it he feels so very tired and achy... The herbs help him too--the ones on the site plus the detox herbs now and then I mentioned previously.

Plus did I mention it? liquid chlorophyll--from Alfalfa is really fantastic for relieving a lot of the pain as well as just giving you more energy. The one made by NOW seems to be the easiest to use -- it has peppermint included which helps against the intestinal distress. When you think about it it makes sense that chlorophyll is so helpful since using it is almost like taking a blood transfusion, it is so similar with the composition of our blood.

Good luck and let us know how you are doing. You aren't alone.

Bea

[GlutenGuy36]

Well I do hope at least some of it helps. It really should. Just hope it didn't overwhelm. I know it was a lot at once.

So, just in case you haven't had enough advice (lol!), an Internet site that might be helpful is the Wilson's Thyroid Syndrome site. Oftentimes one isn't able to adequately convert T3 from the T4 medicine they give you, which is especially needed during the cooler seasons. The herbs they have on the Wilson's Thyroid site can really help, though again no alcohol based tinctures due to them being made with grains, usually glutenous. You can call them to make sure they give you is safe.

Often times low thyroid can be created by having had untreated celiac for years. Problems with the adrenals can be part of this. Exercise helps short circuit this if you tend to be over-reactive to stress all the time. I think in part this comes from ancient times when we had to hunt for our food etc. There needs to be the exercise or we get run down and sick more than the average person... Plus the celiac creates a lot of stress in the body for obvious reasons. I have a friend this happened to. He now takes 1/2 dose of the lowest level of thyroid medicine. The vigorous exercise for him is key. He uses one of those little stair steppers you can buy at Target. If he doesn't do it he feels so very tired and achy... The herbs help him too--the ones on the site plus the detox herbs now and then I mentioned previously.

Plus did I mention it? liquid chlorophyll--from Alfalfa is really fantastic for relieving a lot of the pain as well as just giving you more energy. The one made by NOW seems to be the easiest to use -- it has peppermint included which helps against the intestinal distress. When you think about it it makes sense that chlorophyll is so helpful since using it is almost like taking a blood transfusion, it is so similar with the composition of our blood.

Thanks once again. I will be trying some of these things out to see if they help or not. Have you heard of anyone else on here that has been sick for a long time like me? I started having bad abdominal pains in October of 2007 and not diagnosed until July 14, 2008. Just makes me wonder how much damage due to malabsorbption was done.

I have never felt this awful. -Ted-

Good luck and let us know how you are doing. You aren't alone.

Bea

[mammajamma]

I can sympathize with you... I was diagnosed officially on May 1 and went gluten-free that day. I started feeling much better within a couple of days... but still get belly pain/issues and weird pains as well... headaches, fatigue... I am thinking that it's time to get really REALLY careful with my food and try to stick to whole foods... I've not been so good that way