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Frustrated, Scared, And Exhausted


SickABeinSick

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SickABeinSick Newbie

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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lizard00 Enthusiast

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!!!

Mom23boys Contributor

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.

CarlaB Enthusiast

Check out this thread, this also fits your symptoms. Open Original Shared Link

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.

Ginsou Explorer

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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