I am in pain

[DawnM]

I don't know what this is. It is some sort of inflammation or something. I have thought perhaps I have fibromialgia or something????

 

Could it be a sensitively to wheat/gluten? I have had more of it lately.

 

This is really bothering me now.

 

I also have a lot of digestive issues and have for years. The doctors just kind of say, "Stick to plain foods.....bread, bananas, rice, apples....." Really? That is all you can tell me?

 

HELP!,

 

Dawn

[Ginevra]

It would not hurt to get a celiac screen. :grouphug:

[sbgrace]

The pain is GI, then? I'm sorry if I'm dense tonight..it's been a long day.

Do you have pain outside of the GI system that makes you think fibro?

 

Fibromyalgia should be a last resort dx. after everything else is ruled out.

 

What kinds of GI tests have you had? Any abnormal results? Have you had celiac testing? Do that before removing gluten if not.

 

Celiac would be my first suggestion. Metametrix comprehensive stool test is very good for catching things typically not looked at by GI doctors. It helped my son immensely.

[DawnM]

What does that entail?

 

Could I have an OB GYN do it? I only ask because that is the doctor I need to see next.

 

Dawn

[Ginevra]

What does that entail?

 

Could I have an OB GYN do it? I only ask because that is the doctor I need to see next.

 

Dawn

 

They may be agreeable to giving you a ref for a blood test to see if you have the celiac...thingys...:tongue_smilie: Are they antigens? I'm not a biology genius, sorry.

[Pam L in Mid Tenn]

I have fibro and it is terrible pain.

:grouphug:

It takes a series of appointments and tests. All the tests will have to come back "normal" before they will even consider a fibro diagnosis.

Fibro "feels like" the flu. With sleeping problems and pain at specific points.

 

Do you feel like you have the flu ?

[NicAnn]

An gluten elimination diet is a lot less stressful, in my opinion that screen (and more accurate). We've been through both in the last few years. You may consider taking dairy out as well, since it's a common problem.

 

I had weird pain all of 2009-2010, but never could afford to go to the doctor to find out why. Well, turns out it was low magnesium and vitamin d. I upped both and the pain went away almost overnight. I recommend Natural Calm supplement because it tastes good and really seems to work. I really thought at had Fibro or CFS or something.

 

If you can afford it, or insurance covers it, consider seeing a good Naturopathic doctor. We didn't get better until we saw one.

 

Good luck!!

[DawnM]

GI is one of the issues. My hands hurt, my feet hurt, my lower back and shoulders hurt.....ache really.

 

Dawn

 

The pain is GI, then? I'm sorry if I'm dense tonight..it's been a long day.

Do you have pain outside of the GI system that makes you think fibro?

 

Fibromyalgia should be a last resort dx. after everything else is ruled out.

 

What kinds of GI tests have you had? Any abnormal results? Have you had celiac testing? Do that before removing gluten if not.

 

Celiac would be my first suggestion. Metametrix comprehensive stool test is very good for catching things typically not looked at by GI doctors. It helped my son immensely.

[DawnM]

No. I don't. I just feel achy, but not like the flu. I can still get up and around. I am just in pain while doing it.

 

Dawn

 

I have fibro and it is terrible pain.

:grouphug:

It takes a series of appointments and tests. All the tests will have to come back "normal" before they will even consider a fibro diagnosis.

Fibro "feels like" the flu. With sleeping problems and pain at specific points.

 

Do you feel like you have the flu ?

[DawnM]

Thank you! I will at least try those 2 things. I do know my Vitamine D was low.

 

I have spent a LOT on a natural type person before and gotten nowhere.....DH is adamant I not spend that much time and $$ on it again.

 

Dawn

 

An gluten elimination diet is a lot less stressful, in my opinion that screen (and more accurate). We've been through both in the last few years. You may consider taking dairy out as well, since it's a common problem.

 

I had weird pain all of 2009-2010, but never could afford to go to the doctor to find out why. Well, turns out it was low magnesium and vitamin d. I upped both and the pain went away almost overnight. I recommend Natural Calm supplement because it tastes good and really seems to work. I really thought at had Fibro or CFS or something.

 

If you can afford it, or insurance covers it, consider seeing a good Naturopathic doctor. We didn't get better until we saw one.

 

Good luck!!

[Hedgehog]

I'm sorry. :grouphug: I don't have any answers, but I just wanted you to know that I care. :grouphug:

[DawnM]

That is very sweet. Thank you.

 

Dawn

 

I'm sorry. :grouphug: I don't have any answers, but I just wanted you to know that I care. :grouphug:

[joannqn]

I had weird pain all of 2009-2010, but never could afford to go to the doctor to find out why. Well, turns out it was low magnesium and vitamin d. I upped both and the pain went away almost overnight. I recommend Natural Calm supplement because it tastes good and really seems to work. I really thought at had Fibro or CFS or something.

 

How much magnesium and D do you take? I just started taking both but haven't looked up how much I should take yet...just taking the recommended on the bottle.

 

To the OP, since I don't have insurance or money growing on the backyard trees, I would start with elimination diets. Some people have pain with gluten. Elimination is more accurate than any medical test. (My son had severe learning delays caused by lactose intolerance that their tests said he didn't have.) Some people find improvement from eliminating nightshades; I'm considering trying this myself. Some people find vitamin deficiencies are an issue. I've started taking magnesium and vitamin D and have more energy a week later. I also found that a chronic debilitating knee pain I had for 5-6 years goes away completing when I eat enough fruits and veggies...imagine that! I think our diets are a huge factor in our health and pain issues.

[QueenCat]

:grouphug:Dawn:grouphug:

[LibraryLover]

Get a blood test for Lyme disease.

 

I never though it could happen to me...even though I live in a Lyme Disease capital. :tongue_smilie:

[chickenpatty]

I've been having similar pain as well has some swelling/pain in one of my hands. I went to my regular doctor almost a month ago & had labwork done which shows that there is some kind of autoimmune thing going on. I'm seeing a rheumatologist on Thursday. If I find out anything that might help you, I'll let you know.

 

(((hugs)))

[PuddleJumper1]

When my oldest was 12 he was having horrible joint pain which sent us to the rheumatologist who wanted to give him a diagnosis of fibro but downgraded it to Pain Amplification Syndrome. No treatment. The next summer we saw the Ped for some stomach trouble and ended with a GI consult. Ds was diagnosed Celiac. When gluten was removed ALL joint pain went away. He never had fibro or PAS. I would consult with a GI especially since you also have GI issues.

[DawnM]

Yes, please report back.

 

Dawn

 

I've been having similar pain as well has some swelling/pain in one of my hands. I went to my regular doctor almost a month ago & had labwork done which shows that there is some kind of autoimmune thing going on. I'm seeing a rheumatologist on Thursday. If I find out anything that might help you, I'll let you know.

 

(((hugs)))

[DawnM]

I would love an actual diagnosis. It seems that when I go on a special diet people look at me like I am trying to offend them by not eating their food.

 

I feel better when it is an actual diagnosis.

 

I am going to make a call today but probably won't be able to see anyone until December as we leave for an almost 2 week vacation next Friday and then when we get back it is Thanksgiving week.

 

Dawn

 

When my oldest was 12 he was having horrible joint pain which sent us to the rheumatologist who wanted to give him a diagnosis of fibro but downgraded it to Pain Amplification Syndrome. No treatment. The next summer we saw the Ped for some stomach trouble and ended with a GI consult. Ds was diagnosed Celiac. When gluten was removed ALL joint pain went away. He never had fibro or PAS. I would consult with a GI especially since you also have GI issues.

[thescrappyhomeschooler]

I never got a diagnosis, except for irritable bowel syndrome. One of my sisters was diagnosed with Celiac disease.

 

I have gone gluten-free since the late spring, and ALL my intestinal pain has gone away. I so wish I had done this sooner.

[joannqn]

I never got a diagnosis, except for irritable bowel syndrome. One of my sisters was diagnosed with Celiac disease.

 

I have gone gluten-free since the late spring, and ALL my intestinal pain has gone away. I so wish I had done this sooner.

 

 

If you are going the medical route, be prepared for this kind of thing to happen.

 

My son was diagnosed with unspecified severe learning delays. The pediatric neurologist added the lovely diagnosis of "family circumstances" because apparently it was all our fault. Some of the other specialists suggested he might be autistic. He had GI issues that they couldn't diagnose because, by their tests, there was nothing wrong with him. I put him on a dairy elimination diet as soon as summer started. (I waited until summer because meals were part of his special ed class's curriculum.) Within 3 days the chronic diarrhea was gone. By the end of the summer, he had gone from barely being able to put two words together and generally being unable to communicate (he was 3 1/2) to speaking in full sentences. In two years, he had gone from a year and a half behind to half a year ahead. Today, he's several years ahead in nearly every subject. Yeah, the doctors got that diagnosis correct. :glare:

[Denisemomof4]

I have noticed a direct correlation to how I feel with how I eat. I recently went on the candida diet and when I took a day off while we were away, eating what I wanted without TOTALLY over doing it, I was in PAIN. My legs, hips, feet, THROBBING. I definitely think it's a food issue.

 

Please check out the Body Ecology Diet. Buy the book, read it to understand the why's of the diet, and then decide if you can do it. It won't be easy, but it's what can get your body back into balance for you. I felt TREMENDOUS when I did it years ago. I just wish I didn't allow my diet to slip back to an unhealthy state (for me, as in too many carbs and certain foods I should avoid)

[Negin]

I'm sorry. :grouphug: I don't have any answers, but I just wanted you to know that I care. :grouphug:

Same here.

Been thinking of you a lot.

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[Negin]

I don't know what this is. It is some sort of inflammation or something. I have thought perhaps I have fibromialgia or something????

Could it be a sensitively to wheat/gluten? I have had more of it lately.

I also have a lot of digestive issues and have for years. The doctors just kind of say, "Stick to plain foods.....bread, bananas, rice, apples....." Really? That is all you can tell me?

HELP!,

Dawn

Dawn, everyone has given very helpful suggestions and tips. Sorry that the doctors haven't been of much help. Quite typical in my experience also. :glare: Very frustrating.

 

If you don't mind my asking, where do you feel most pain? Digestive?

 

Inflammation - which is the root of most pain - is something that many of us have. Oftentimes we don't even know that we have it. I can post lots of tips on that if you or anyone here is interested.

 

It may very well be the wheat/gluten. Sometimes the foods we crave the most are the ones that we are most sensitive to.

 

Someone mentioned D3 and magnesium. :iagree: If you need tips on those, I can post that as well.

 

I hope and pray that you find relief very soon. Pain is horrible to have to deal with. :grouphug: :grouphug: :grouphug:

[DawnM]

Thanks.

 

I suppose the worst is the digestive and quite honestly, I had had digestive issues for years and years and just suffer through. It can get really bad, but mostly it is just an irritation I have come to ignore because I didn't know what to do about it.

 

Once I realized it wasn't stomach cancer (at least I don't think so, as it is has been about 20 years or so of it going on) I have just sucked it up.

 

I have looked at IBS and Celiac and everything in between.

 

The other pain is relatively new....within the last 3 to 4 years. I was getting some help from an acupuncturist but it was a very slow and expensive process and I just could not keep up with it as she basically said I would need to spend about $200-$300/mo for the rest of my life to keep going. That is when I quit as I knew that was not going to happen.

 

I also tried a chiropractor and again, I did get some relief (and she gave me a dietary plan) but it was also pricey and not helping enough to keep going. Her dietary plan included some very expensive supplements. I am sure they helped, but not enough to keep spending that kind of money.

 

Dawn

Dawn, everyone has given very helpful suggestions and tips. Sorry that the doctors haven't been of much help. Quite typical in my experience also. :glare: Very frustrating.

 

If you don't mind my asking, where do you feel most pain? Digestive?

 

Inflammation - which is the root of most pain - is something that many of us have. Oftentimes we don't even know that we have it. I can post lots of tips on that if you or anyone here is interested.

 

It may very well be the wheat/gluten. Sometimes the foods we crave the most are the ones that we are most sensitive to.

 

Someone mentioned D3 and magnesium. :iagree: If you need tips on those, I can post that as well.

 

I hope and pray that you find relief very soon. Pain is horrible to have to deal with. :grouphug: :grouphug: :grouphug:

[snickelfritz]

The problem with going with a medical diagnosis is that the doctors may not really know. My doctor (whom I generally like) gave me my Hashimoto diagnosis with no further instruction. "Oh, yeah. This is why you've had thyroid issues all of these years. Have a good day." The same day I got THAT phone call, I was having a huge amount of joint pain (My joint pain has been on and off. I've gone through weeks of barely being able to move my wrists and waking up to walk like an old woman and then I'll be fine for weeks.) Since I had eaten a pasta meal w/ french bread the day before and my Hashimoto research kept turning up gluten.....I figured it was a harmless experiment to cut it out.

 

But, I rarely tell people. The only time it is REALLY difficult, is if someone has cooked a full dinner for you. Otherwise, even potlucks usually have some standard foods that will fit (veggie trays, fruit trays, cheese, etc....) And I eat ahead of time.

 

The opposite tact is to go eat at a mall fast-food restaraunt (Chick-Fil-A---which specializes in BREADED chicken) and grill the cashier about the gluten content of their food. I saw this happen and was a little flabbergasted.:tongue_smilie: At places like that, I get a standard grilled chicken salad w/ vinagrette dressing. No croutons.

 

Now, I will say that I cut out all obvious gluten containing foods. I don't eat breads, pastas, crackers, croutons, or typical gluten containing sauces like gravy. And, for my grocery shopping, I do check labels. But, at restaurants, I don't ask if the buttered carrots and grilled salmon sauce have gluten. I just try to pick foods that typically don't have it. I might do a quick check on my I-Phone, but that's it. But, I don't have this instant extreme reaction to gluten ingestion that I know some people have.

 

I also found a HUGE post of Negin's and picked out a few things that were easy/inexpensive to try. I think, after 2 months of these things, that I feel better. But, I also think that it will take more months to make sure it's not psychsomatic. Since I'm also losing weight and it's not expensive or potentially harmful, I just keep plugging along.

 

So, I do:

 

1. Gluten Free

2. Bath's w/ 2 cups Epsom salt and 1 cup Baking Soda. The Epsom salt contains Magnesium that your body absorbs and, I think, the Baking Soda helps detoxify. Either way, this is really cheap and warm baths help joint pain anyway.

3. I take my multi-vitamin and fish oil. Both are standard. I did research respected fish oil brands.

4. I'm currently trying no dairy. I was having stomach issues and I think it was from all of the dairy I was eating in place of bread.:tongue_smilie: I was eating a LOT of cheese. This is recent, so we'll see.

5. My next step will be to cut out Nightshades, which pops up for arthritis problems. I'm waiting a bit, because cutting out tomato sauces and sweet potatoes (my FAVORITE) will be pretty limiting for me.

 

ETA: I forgot to add cutting out artificial sweeteners to the list. I did that for another reason. But, I've replaced huge amounts of diet soda with huge amounts of black and green tea, either unsweetened or sweetened with either honey or regular sugar. The green tea was also on Negin's list.

Edited October 28, 2011 by snickelfritz

[jplain]

5. My next step will be to cut out Nightshades, which pops up for arthritis problems. I'm waiting a bit, because cutting out tomato sauces and sweet potatoes (my FAVORITE) will be pretty limiting for me.

Nightshades include potatoes, sweet and hot peppers, eggplant, and tomatillos.

 

Sweet potatoes are not nightshades, because they're not potatoes. They're yams. Keep enjoying them!

[Negin]

I was getting some help from an acupuncturist but it was a very slow and expensive process and I just could not keep up with it as she basically said I would need to spend about $200-$300/mo for the rest of my life to keep going. That is when I quit as I knew that was not going to happen.

I also tried a chiropractor and again, I did get some relief (and she gave me a dietary plan) but it was also pricey and not helping enough to keep going. Her dietary plan included some very expensive supplements. I am sure they helped, but not enough to keep spending that kind of money.

Dawn

Dawn, I'm so sorry :grouphug:. This really and truly blows. You're in my thoughts and prayers a lot. I can relate to this somewhat. Dh has had digestive issues for almost 3 years. Such a pain. :confused: I hope and pray that you find some relief.

[LaxMom]

GI is one of the issues. My hands hurt, my feet hurt, my lower back and shoulders hurt.....ache really.

 

Dawn

 

That does sound like how I felt after a recent gluten binge (and how I was feeling on and off for years before going GF). Except I never had GI issues.

 

I can tell you that my gluten tests were "sub clinical"; I am positive for one celiac gene, and I had some antibodies but not enough to be clinically definitive. My doc's take on that was to go GF anyway because non-sensitive people don't have any antibodies, and a trial wouldn't hurt.

 

We were also addressing other things at the time and I really didn't think the diet was a big factor... Until the binge. Yeah, that was enough proof for me.

 

Eta: my way of going around in the world is largely what Erica described. I'm not so sensitive that I live in fear of cross contamination, but I do look for obviously gluten free offerings when I'm eating away from home.

 

Another recommendation, which I've had good results having herbal clients follow, is The Inflammation-Free Diet Plan. That has been helpful for clients dealing with asthma to widespread, nonspecific pain.

Edited October 31, 2011 by MyCrazyHouse

[DawnM]

Thank you. I have been almost all gluten free/wheat free for about 5 days now. It isn't a long time, but I already am feeling better.

 

Dawn

[Pamela H in Texas]

I think I would *try* to get the testing and a dx first. However, regardless, the elimination diet will tell you if you have a sensitivity; and if it works, get rid of the pain.

 

My daughter went gf over a year ago (maybe more like a year and a half?). She has NO pain versus the CONSTANT pain she used to have (I first took her to the doctor for joint issues at one year old!).

 

I did have a blood test for celiacs myself and doc said I didn't have it. Now I wish I knew what the numbers were because what doc requires for the dx vs what shows a sensitivity is two different things.

 

Anyway, another consideration is seeing an osteopath, have osteomanipulative therapy. This gave me more of a life than I have had all my adult life! I am so thankful! I had several sessions last fall in SW VA (where I would go if I had the choice now, btw) and the difference was amazing. Beyond. Practically miraculous. I did have a follow up visit back home and am in need of another. But seriously, great stuff.

 

And I have tried the saliva testing (can send you the info if you need; it's pretty cheap) and recommendations there. All sorts of things to consider.

 

Your body is a whole. If one part is out of whack, it can mess up whole systems. It doesn't seem that digestion and joint pain should be connected but they very likely are. It just may take some figuring to see what works for you. Mainstream medicine isn't likely to help, but I would go ahead and try to see if you can get some answers that direction first.

[Negin]

Thank you. I have been almost all gluten free/wheat free for about 5 days now. It isn't a long time, but I already am feeling better.

Dawn

That's fabulous and I'll be continuing to pray for you. Thinking of you.

:grouphug: :grouphug: :grouphug:

[DawnM]

What does the saliva test tell you?

 

Dawn

 

I think I would *try* to get the testing and a dx first. However, regardless, the elimination diet will tell you if you have a sensitivity; and if it works, get rid of the pain.

 

My daughter went gf over a year ago (maybe more like a year and a half?). She has NO pain versus the CONSTANT pain she used to have (I first took her to the doctor for joint issues at one year old!).

 

I did have a blood test for celiacs myself and doc said I didn't have it. Now I wish I knew what the numbers were because what doc requires for the dx vs what shows a sensitivity is two different things.

 

Anyway, another consideration is seeing an osteopath, have osteomanipulative therapy. This gave me more of a life than I have had all my adult life! I am so thankful! I had several sessions last fall in SW VA (where I would go if I had the choice now, btw) and the difference was amazing. Beyond. Practically miraculous. I did have a follow up visit back home and am in need of another. But seriously, great stuff.

 

And I have tried the saliva testing (can send you the info if you need; it's pretty cheap) and recommendations there. All sorts of things to consider.

 

Your body is a whole. If one part is out of whack, it can mess up whole systems. It doesn't seem that digestion and joint pain should be connected but they very likely are. It just may take some figuring to see what works for you. Mainstream medicine isn't likely to help, but I would go ahead and try to see if you can get some answers that direction first.

[sbgrace]

I'm so glad you're doing better. If you want a formal diagnosis/testing for celiac you'll need to do it before you get it out of your system. If you aren't eating gluten the tests aren't accurate. That said, if you're feeling better I'd likely just continue avoiding at this point assuming you continue to feel better. The symptom improvement would be all the proof I'd need.

 

I wanted to mention that the achy pain is very common in vitamin D deficiency. Further, there is a link between low vitamin D and auto-immune conditions like celiac. It may not cause it or prevent (or it might in some way) but celiac patients are often low. It may aid in healing too. So I'd recommend (and did this myself) that you drastically increase your vitamin D3 supplementation. The average person needs 1000 IU per 25 pounds to maintain their current level. They need much more to increase a low level.

 

A healthy adult with any vitamin D level can take up to 10,000 IU per day without toxicity concern. If you take 10,000 (two 5,000 IU pills a day) for six days you're in a safe supplement range and will raise levels quickly too. You want a D3 form only. Sometimes I can find 5000 IU pills locally but sometimes I have to order online. The vitamin D council website has good information about safety, supplementation, etc. Magnesium and vitamin K are cofactors that are good to go with vitamin D. Zinc can help healing for you and is often low in celiac patients as well (due to malabsorption probably). I like optizinc because it won't reduce iron levels and is very well absorbed.

 

I'd continue with the diet changes (and add vitamin D3 at the highest dose you are comfortable with) and I hope you continue to improve. :grouphug: