...last Shot At Normalcy

[BloatusMaximus]

This is my last attempt to determine why I feel so horrible all the time. A little history: constant bloating and volumous gas, intestinal cramps, aching joints that seems to rotate to different limbs. tight muscles, constant muscle twitching, INSANE INSOMNIA. This has been going on for 30 years. I have been to nearly every specialist and had numerous testing to get to the bottom of this to no avail. I am so miserable. One doctor actually prescribed me an anti-depressant to treat my symptoms!

I stumbled upon your forum after recently noticing that my insomnia is worse after eating wheat products like baked goods and bread. My head feels confused and jittery and my whole body is out of balance and aching.

My question is this: does this sound like a wheat/gluten allergy? Be honest, please. Believe it or not my symptoms are also consistant with heavy metal poisoning, mineral deficiency, and many other illnesses.

I have been gluten free for 1 week as an experiment and guess what? NO GAS OR CRAMPS!! But the joint inflamation and twitching persists. Do other gluten intolerant people here have such difficulty with muscle and joint problems? Insomnia too?

I appreciate your candid replies. If this gluten free thing doesn't help me I'm giving up, giving away all my posessions, and going away....for a long....long dirt nap.

Thomas

[psawyer]

Hi, Thomas, and welcome to celiac.com!

Your symptoms are consistent with celiac disease, but that is not the only possibility. It is also possible that you have celiac disease and one or more other conditions.

If you have been an undiagnosed celiac for a long time, it will take some time for your body to heal. I had severe symptoms for five years. I noticed some improvement immediately on the gluten-free diet, but it took about three months for me to feel normal. One week gluten-free isn't enough to know.

Your joint pains could also be rheumatoid arthritis, another autoimmune disease. People who have had undiagnosed (and thus untreated) celiac disease have a tendency to develop other autoimmune diseases.

[BloatusMaximus]

....hmmmmm.......I see I have a lot to learn. I actually do have some autoimmune issues. But not arthritis or obvious underlying conditions (as determined by numerous MRIs, Xrays, and blood profiles). I am a very fit and health conscious person, exercise regularly, and grounded spiritually (and otherwise). I have an excellent diet and am very knowledgeable about anatomy and physiology. That's what is driving me crazy: I simply can't get on top of my constant, unending health issues. Gotta be gluten. Or maybe just a simple wheat allergy. Is there such a thing?

Oh, there's one other thing: I get these super itchy hives that break out on my legs and rear... and just recently a few places on my back. I mean....insane itching.....that forms welts. They last for a week or so .....then subside 'till the next episode, maybe a few weeks later. Is this consistant with gluten/wheat allergy?

Question: doesn't celiac disease specifically refer to the destruction of the villi in the intestinal tract?

Thanks for you thoughtful reply.

Thomas

[jerseyangel]

Hi Thomas and welcome

Please don't give up--I understand how you are feeling because I had symptoms for over 20 years before being diagnosed and I gotta tell you there were days.....

In addition to the great information that Peter has given you, the itchy "hives" could be the skin manifistation of Celiac Disease, Dermatitis Herpetiformis. A dermatologist can take a sample of tissue from next to a lesion and biopsy it. If it is positive for DH, you are then automatically diagnosed with Celiac.

Open Original Shared Link

You are right, in that Celiac Disease is an autoimmune condition where the ingestion of gluten causes the body to attack the small intestine. A person can also be Gluten Intolerant--not showing positive on testing but improves on a gluten-free diet.

It's also possible to have an allergy to wheat--a separate condition.

I'm glad you found us--let us help you figure this out

[txplowgirl]

Hi thomas,

It sounds a lot like gluten intollerance at least. Plus you may have other food intollerances as well. I started being sick around age 7 and I didn't find out until a year ago, at 44 that I had a gluten problem as well as other food intolerances. On top of fibromyalgia and rheumatoid arthritis. All the dr's would tell me was depression and anxiety. Well, yeah! You'd be depressed and anxiety ridden too if you hurt and was sick as a dog all the time. As my other half would call me, "the Snarly Witch Bit*h. Which I wholehartedly agree with. I was.

But anyway,

If you do decide to go totally gluten free, you really need to start out with plain meats, brown rice, fruits, etc. Also. if you share a gluten house you will need to get a new toaster, collander, utensils, if they are wooden and cutting board. New pots and pans if they have scratches because gluten hides in these.

Also, check your shampoos, soaps, lotions and other toiletry items because believe it or not some are made with wheat.

Welcome to the forum.

[momxyz]

Thomas,

you sound very frustrated.... as well as depresed. Your comment about a long dirt nap concerns me...

Gluten intolerance spans a whole spectrum of symptomology. Celiac disease is a form of gluten intolerance, but there is as non-celiac gluten intolerance as well. Google on that term and see what you can find.

The long and the short of it is this. Gluten intolerance affects many people, more than I think most medical practicioners appreciate, in one way or another. For some people it shows up early in life. For others, not until later in life. There are many on this board who have struggled with painful symptoms for years, just as you have. For others, like myself, the problems appear "out of nowhere" after years of good health. And for others, like my daughter, the issues are more continuous, but seemingly unrelated, until one day you wake up and realize there is a trail of crumbs to be followed through the forest.

Gi issues - you've got those. Skin issues - you've got those. Insomnia - yup, celiacs experience that too. Although that can be related o depression.

Depression. I think there are times in our lives when it wouldn't be normal if we weren't depressed. poop/Life happens. And dealing with pain and frustration and being unable to find relief... Well if that ain't a reason to be depressed I don't know what is.

On the other hand. There is a causal relationship between celiac/gluten intolerance and depression. It is physiological, not entirely psychological. If the gluten intolerance/celiacs disease damages the villi then your body cannot absorb nutrients adeaquately. Tyrosine and B vitmins are key players in your body's ability to manufacture serotonin. If you are not absorbing those, your serotonin levels could be reduced, leading to physiological depression.

I sense a real cry for help in you post and I will hope you will listen to my reply. Six and a half years ago my daughter was tested for Celiacs; we were told she did not have to avoid wheat. (again if you read, testing for this disease is not a perfect science) She continued to have off and on again minor GI issues but nothing so severe that we felt needed more rigorous followup. Then this pas summer she confessed feelings of depression. this is in a kid who had everything going for her... she was on top of the world.... and suddenly she was at the bottom. She was diagnosed with both depression and anxiety.

She went gluten free in July. Improvement was gradual for her, but it did come. And along the way she started sleeping better (she had been experiencing frequent insomnia). Her constipation wen away. Her mood lifted and she was definitely easier to live with. The only thing that did not start resolving was her anxiety and she was put on a low dose of an SSRI end of September. But I do feel the gluten free diet made a noticeable difference, and more importantly, she does too.

And me? I had this rash that was driving me crazy. I would never had connected it with gluten, until I began researching to help my daughter. I went gluten free in August, and guess what, my rash slowly resolving.

I didn't reseek diagnosis of Celiac's for my daughter, nor did I initiate doing so for myself. The improvement we have experienced is enough.

As one other poster mentioned, you could have gluten intolerance/celiac along with other problems. But I would definitely recommend staying on the gluten free diet. One week has shown reduced GI symptoms, so, there is at least some positive response. For the other issues give it some more time; relief does not always come in an immediate manner. I remember for my daughter it was about a month for the insomnia to dissipate, for example. My rash improvement has been steady but gradual over 2 months.

So give it some time but do seek help for the problems that persist.... especially if you are having feelings of depression. Sometimes you just cant go it alone.

[tmbarke]

At the ending of last year - my shoulder felt constantly twisted and aching like I couldn't get any relief.

Earlier this year, my back would 'lock up' and twist - not to be untwisted - and the pain was making me a big baby! I used the heat packs, aleeve, hot showers, and finally when I couldn't sleep because of the pain in my joints, I got out of bed and whined to my brother to rub the bengay into my back and shoulders and neck.....as my neck was feeling tight or tensed and my jaw was so tight, I had to hold and stretch my mouth wide open for about 30 sec a shot just to get the floating feeling to relax it but it would tense right back up.

After this was going on for a while, my ankles turned into cankles for about a week.

My research on a medical symptom site only mentioned the possibilities of diabetes or heart disease so I cut out sugar and went to splenda and wylers singles to pour in a bottle of water......only to find that my throat was swelling up and so was my tongue.

I'm getting scared now! I'm 44 yrs old and I can't be active and have gained so much weight. I'm in a fog just getting by each day - always unhappy and stressed - my eyes weren't focusing together anymore.......not to mention when I ate, I'd be so full and bloated I couldn't stop....I also made 4-5 of those wyler's drinks and sucked each one of them down in a few hours.

I had a physical (couldn't wait to talk to my doctor and get the blood tests to see what was going on) on Monday October 12th and told my doctor about everything I was feeling and going thru.

He told me I was too young to feel this way and checked my blood to find my vitamin D and B's were very low. He checked my blood sugar for diabetes and found I was not to worry about that for the % I was at.

He then came in and gave me a diet to follow - 2 pages with instructions to start walking, take vitamin D 1000 iu, take a vitamin B complex and a multivitamin daily.....then proceeded to hand me another list to start eating gluten free.

At first, I thought - he just wants to see me healthier - then I read the gluten free status. WTF!?

I was devastated!

Then I did the research here and hundreds of other sites about wheat free and gluten free. Those symptoms were mine and some symptoms weren't mine but read it affects everybody differently.

I was lost when I had to shop.

After one week of carefully intricately not taking in any gluten, My shoulder and neck are just slighly crampy but 75% less than it was. My throat and tongue are not swelling up and my jaw is nice and relaxed. The back relaxed and I'm able to walk a certain distance and feel I could do it more and more often.

My vision is clearer and my fog is going away.

What I am experiencing now is the mood shift from the withdrawls and the lethargic feeling as well as having several BM's a day and urinate 10-15 times a day.

I'm careful not to do the gluten because although I feel the withdrawls, I also feel 80% healthier than I've felt in 15 yrs!

I'm on my way back to ME.

My doc was one smart cookie to target it right off the bat without a test.

Regardless if it's Celiac or Wheat allergy (which I believe caused the swollen throat leading me to believe I was having an allergy attack every time) all I can say is, You owe it to yourself to rid yourself of pain and suffering! This is the best place to be and the best place to start on your gluten-free world.

I could NOT have done it or gone this far if I didn't have this forum to talk to and be understood - I'm not alone - neither are you.

Blessings........Tena

[ang1e0251]

I just wanted to chime in and agree with what has been said. One week gluten-free is not enough to resolve all your problems. I saw great improvement in one week. But the rash took about 8 weeks to clear up and the neurological problems much longer. So hang in there. I'm two years in and feel 20 years younger, it's worth it to me.

[OptimisticMom42]

Good Morning Bloatus,

About the muscle pain.... the damage to your intestine prevents you from absorbing nutrients and minerals like magnesium and iron. Low mag causes cramping. Low iron causes restless leg. I would try supplements. And forget the dirt nap, celiacs aren't quitters. Welcome to our world, the lastest figures say that we constitute 1/3 of the world not the 1 of 133 that you must have read a million times in the last week.

Take Care,

RA

[tmbarke]

Good Morning Bloatus,

About the muscle pain.... the damage to your intestine prevents you from absorbing nutrients and minerals like magnesium and iron. Low mag causes cramping. Low iron causes restless leg. I would try supplements. And forget the dirt nap, celiacs aren't quitters. Welcome to our world, the lastest figures say that we constitute 1/3 of the world not the 1 of 133 that you must have read a million times in the last week.

Take Care,

RA

RA,

GOOD TO KNOW ABOUT THE MAGNESIUM! THANKS FOR THE TIP!

HOW MUCH WOULD BE ENOUGH? DOES A MULTIVITAM HAVE ENOUGH (WOMENS FORMULA) OR SHOULD I ADD THAT AS I HAVE THE D AND B COMPLEX?

TENA

[BloatusMaximus]

You guys are awesome. In reply to some of your comments: Yes plowgirl, I do have a few other suspected food sensitivities. My whole diet now is one big long experiment weeding out food alergen culprits. My problem is that my signs are subtle. I don't get the typical "rash around my mouth" reaction. But I do notice, for example, my resting heart rate goes up immediately for several hours (along with heart palps) after eating certain foods. Funny how I just took those signs for granted in the past.

Get a new toaster and cooking utinsils? Are you serious!? I can see I am going to be an outcast in my own home. The family will not go along with this "gluten free" lifestyle, no way. They already think I am a freak. I am just now starting to include meat in my diet after going vegetarian for the last 1.5 years, thinking meat protein was the source of my problems. I lost 30 lbs., skinny as a rail, but felt as bad as ever.

Yes, I am waaaaaaay frustrated and probably a little depressed. I am just disgusted in myself, I guess. It seems like I can never have a normal life like everybody else (except many of you!). I am so completely over having to tip-toe around my health. It has been a battle for years. I don't know why I never suspected wheat before now. Maybe just because it is an unseen entity.

One other thing I have learned: Most Doctors are idiots. They routinely misdiagnose and are so trigger happy to prescribe medicines for things they know nothing about. I have a SEVERE distrust for traditional medicine now. They have NEVER been able to help me. My own research has pointed me in the right direction, not them.

I am now about ten days into this gluten/wheat free diet now. I can definitely tell a difference regarding intestinal discomfort. I have this unenviable distinction of being the gassiest human alive. No more. I am very encouraged by this experiment thus far.

Teena: WOW! I have the exact same shoulder thing you described. AND the same exact jaw issues as you! Amazing. No cankle or throat/tongue issues, though. I am glad you have a good doc and improving.

I am going to give this at least another month. I did the candida diet for 2 months thinking my problems were yeast/ mold oriented. What a total pain in the azz. BTW, the symptoms are quite similar and overlap, big time.

Now, if normal sleep would just follow...... I'll know I'm on the right track. Thanks for all your insight and genuine, objective observations. I appreciate you all.

Thomas

[BloatusMaximus]

I just wanted to chime in and agree with what has been said. One week gluten-free is not enough to resolve all your problems. I saw great improvement in one week. But the rash took about 8 weeks to clear up and the neurological problems much longer. So hang in there. I'm two years in and feel 20 years younger, it's worth it to me.

I am very curious as to the neurological aspect of all this. Can anyone elaborate? I have a few very peculiar things going on. I want nothing to do with mood altering drugs or any pharmaceuticals that messes with brain chemistry. No way, not going down that road. I have seen too many lives ruined by these drugs. I firmly believe most any problem we have can be handled nutritionally.

What are common neuorlogical manifestations of gluten intolerance? I can't find much on the web, only a brief vague reference.

Thomas

[OptimisticMom42]

What are common neuorlogical manifestations of gluten intolerance? I can't find much on the web, only a brief vague reference.

Thomas

Google schozophrenia and gluten! There have been tons of studies where gluten was taken away from whole wings of hospitals or whole units of prisons with remarkable results. And read "To Good to be True, Nutrients Quiet the unquiet Brain".

[OptimisticMom42]

RA,

GOOD TO KNOW ABOUT THE MAGNESIUM! THANKS FOR THE TIP!

HOW MUCH WOULD BE ENOUGH? DOES A MULTIVITAM HAVE ENOUGH (WOMENS FORMULA) OR SHOULD I ADD THAT AS I HAVE THE D AND B COMPLEX?

TENA

I'm taking 1000mg of mag before bed. If I skip it I get cramps in my feet and my motility slows waaaaaaay down.

[tmbarke]

I'm taking 1000mg of mag before bed. If I skip it I get cramps in my feet and my motility slows waaaaaaay down.

THANK YOU, I'LL GIVE IT A TRY

MY CRAMPS ARE STILL THERE AT AN UNCOMFORTABLE STAGE AS I CAN LACK POSTURE DOING COMPUTER WORK ALL DAY TOO.........AND NOTICED TODAY SOME ACHING IN MY KNEES (MOST LIKELY THE WITHDRAWLS AND FEELING WEAKENED).

TY AGAIN

TENA

[momxyz]

I am very curious as to the neurological aspect of all this. Can anyone elaborate? I have a few very peculiar things going on. I want nothing to do with mood altering drugs or any pharmaceuticals that messes with brain chemistry. No way, not going down that road. I have seen too many lives ruined by these drugs. I firmly believe most any problem we have can be handled nutritionally.

What are common neuorlogical manifestations of gluten intolerance? I can't find much on the web, only a brief vague reference.

Thomas

here is one website

Open Original Shared Link

[ang1e0251]

I take approx. 700 mg of magnesium in three doses daily. Do NOT start at this dose! Start at a low dose and add more every 3 -4 days. It will not agree with you otherwise.

[Fiddle-Faddle]

Welcome, Bloatus Maximus! Hopefully, you can soon change your name to Healthy Maximus.

Many here had to eliminate dairy as well, since gluten-damaged villi do not heal in the presence of dairy protein (the villi are supposed to make lactase, which deals with the lactose in milk, but don't when damaged). Some cannot tolerate dairy ever, some can add it back in after the intestines heal.

Many people here do have other autoimmune problems, and remarkably, it seems that most of those problems resolve or at least greatly improve on a gluten-free diet.

There are also people who have underlying issues that can cause or exacerbate gluten intolerance and celiac-similar intestinal issues. Lyme disease is one of these underlying issues, and there have been a shocking number of celiacs on this board who tested positive for Lyme Disease.

That might be something to look into if a gluten-free diet doesn't resolve your symptoms.

And you are right, most (though not all) doctors are idiots. You may be a newbie, but you skipped right to the head of the class on that one!