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SickABeinSick

Frustrated, Scared, And Exhausted

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Hey Everyone, First off all your posts have been extremely helpful and informative, it's comforting to know i am not the only one out there feeling this way.

Anyways, i am having a difficult time determing what exactly is wrong with me. So any help would be GREATLY appreciated.

I'm a 22 yr old female, I had my first stomach issue when i was 14, basically ecruciating gas pains followed by diarreah. Only one night, not even sure what I ate. However in the past 2 years those same pains have come back. And have grown progressively worse over time. Usually the stomach pains would be once every four or five months, then to two or three months, then once a month, and now (for the past 3 months) they have grown to about 8-10 times per month. It used to happen immediately after eating out, especially Japanese Hibachi or Italian. The pains are so bad that i cry and crawl into a ball on the floor. I suffer from constipation and it is hard to get a BM after the pains, so i use suppositories to help. More recently the pains have ranged from mild to severe depending on what i eat. And have started from foods that i prepare myself as well.

Other side effects that bother me are:

- The increase of blinding headaches, twice a month, lasting for 3-5 days. Nothing works for them. Started in October.

-Fatigue during the day

-Almost constant low grade fever of 99.5

-Canker sores, (but not sure if it's because i could be biting me mouth in my sleep)

-Restlessness at night

-Panic Attacks and Anxiety

-Muscle pain in my legs and left arm. Sometimes so bad that i find it hard to push the peddle when i drive. (does not happen very often)

-Tingle in my left arm that runs down the entire length even into my fingers.

-Neck pain, shoulder and neck muscles are always tense and sore.

-Bloating almost always,my tummy is never flat and im very thin and work out regularly.

-Noticed that my vision has gotten pretty blurry in the past year, more so in my left eye. Hard to drive at night too. And sometime my eyes hurt.

-Sinus infections, congestion almost everyday.

-Feeling of a heavy chest often (could be anxiety)

I am so tired of not knowing what is wrong with me, it is a never=ending battle and my family/friends/and boyfriend just say im a hypochondriac and think i am crazy or making it up. IM NOT!! My symptoms are real and i want help!

Ive been to 3 gastros who said i had IBS and put me on Meds that never worked.

Ive been to a neurologist for the headaches, had an MRI, and he said its prob migraines.

I always pass physicals with flying colors.

WHAT IS WRONG WITH ME!!!! :(

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome to the Forum!!!

I say try to the gluten-free diet. You have absolutely nothing to lose, except maybe your pain. I had the headaches, too. Nothing made them go away, from tylenol, to excedrin, NOTHING!!! and now, I know that exact headache, which I also get when I eat eggs (I'm allergic to egg whites).

When I did my elimination diet, I didn't have a headache for a whole week... WOW! and the last thing I reintroduced was gluten. Within an hour or two, horrible headache that had me laying on the couch for the rest of the night. I also have sinus problems, which, honestly, I just started taking Zyrtec and that has seemed to be the final piece. My sinus pressure has started to go away.

So... there are many of us who think that IBS is merely a symptom, and once you found out what causes the irritation, you can begin to correct the problem. I think the fact that you are on this forum shows that you are suspect that gluten could be your problem. So, try it for 2 weeks. See what happens. Your symptoms may not go away entirely, BUT, they may begin to improve.

Again, welcome, and feel free to ask ANY questions!!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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I've had almost all the symptoms you have described...especially the rolling into a ball on the floor. The pains were so horrible and I would just lie on the floor for hours. I couldn't even get up into bed.

Mine is mostly from milk although we have just learned that the "leftovers" are from gluten. If you haven't started, you may want to consider testing both.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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Check out this thread, this also fits your symptoms. http://www.glutenfreeforum.com/index.php?showtopic=36163

Did anyone ever test you for celiac disease? It's such an easy test ..... and it would answer your question on whether you have it!

Don't give up till you find what's wrong .... I didn't and today I'm feeling much, much better. Hang in there, it's tough, especially when no one believes you because your symptoms change faster than the weather.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Your symptoms certainly sound like celiac and/or lactose intolerance. I remember those days many years ago when I also was in excrutiating pain rolled up in a ball and holding my breath....the pain was on the level of childbirth pain. A simple lactose intolerance test will determine if lactose is a problem. Alternating diarrhea and constipation and gas have always been a problem with me. I developed the lactose problem 30 years ago.

This past year I developed additional abdominal pain and distention 24/7, sharp stinging pains in various parts of my body that only lasted a few seconds, tingling mostly up my back,muscle or nerve twitching, nausea, heartburn that did not respond to Nexium/Protonix. After having normal blood test results by a gastro dr. I had the Enterolab test done (I had no insurance) and found out I have double celiac genes, also positive for casein and soy!! I had previously been diagnosed with IBS and/or diverticulitus and the meds prescribed did nothing but make me sicker. Without the Enterolab test, I would have not known what the real problem was for years!

This forum is the best site for info.....you really should be tested....and if the blood tests are negative, have further testing done to rule out celiac.

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