Something Is Wrong, But The Test Was Negative!

[iLoveAMM]

I went in a week and a half ago and got tested for Celiac. I called back a week later and they told me the tests were negative (I am not sure what tests they did, but I think I will ask for the results) This is a small low-income clinic, and from my experience there, the techs/nurses don't really seem that smart. So I am hoping that it was messed up somehow. I feel like this would make complete sense of everything I have. I have been researching, trying to find what could be wrong with me, because I know that something is! I asked the Dr to do it and he said ok. I was really hoping it was, because then I would have some answers! I was pretty upset when I found out it was negative.

For almost my whole life I have had unexplained medical problems (I am 21).

I think it all started when I was 11 and my parents divorced and my mom got re-married to a guy I didn't like shortly after (3 1/2 months). It was a very hard time for me.

I started getting bad headaches, I also had a severe migraine for 3 1/2 months straight when I was 11. I couldn't remember things, even my best friends names, couldn't walk straight, VERY angry and irritable, my stomach always hurt, I was always feeling shaky, weak, and tingly, and I was always tired. I was hospitalized for a day and it went away for a bit. They did MRI's, CAT scans, and blood tests and could find anything wrong. They decided it was just the trauma from the big change (along with the divorce we also moved to Spain with the new stepdad, but I liked it there, so that was it!).

I continued to have most of the same problems and was put on anxiety/depression meds after that, but they didn't help with the symptoms.

I then got mono when I was 16 and I have really never felt the same. It took me 6 months to even be able to be out of bed for half the day. I was hospitalized quite a few times for a day (never stayed overnight). I also had a laproscopy then, because I was always having horrible periods that would leave me doubled over in pain and in bed the whole week, and stomach pain, constantly. They thought it was endometriosis, but didn't find anything. I was but on birth control to help with the pain. It helped a little.

Ever since then I have felt extremely exhausted every day. I have to take a nap to make it through the day and even then I dont feel refreshed or have any energy.

I have had constant head aches. I have maybe one or two days a month where I only feel pressure and not actual pain. It is mostly behind my eyes and forehead, and yes I get my eyes checked every year. Some days its really bad and I have to stay in bed as much as possible. I have been on almost every migraine medicine they make and none have worked.

I always feel bloated, gassy and I either have loose stools or am constipated. My stomach looks like I am 5 months pregnant and its hard to the touch. It also always hurts. Its mild sharp pains, but they cant get intense if I eat things with gluten in it (I have noticed) Also when the DR was pressing on it, it hurt very badly and continued to hurt very badly for hours. (I am for sure NOT pregnant)

I have horrible periods and was hospitalized for a week, a week after I had my baby because of abdominal pain that was so severe I was screaming in pain. It was way worse than child birth and no meds would make it go away. Then suddenly after a few days and tons of tests, it was gone.

I have always been anemic despite constantly taking iron supplements.

I have always had very very dry cracky skin no matter how much lotion I put on or how much water I drink.

I always feel nauseated. I have gotten used to it since it never goes away.

I have no appetite except sometimes for fatty foods (hamburgers and fries, or pastry stuff and cookies). I get a sudden craving for them and that is all I can think about until I have it.

I tried eating really healthy (lots of whole grains and such) and exercising for a while, but didn't lose even one pound, and I have even less energy than before.

I black out, and almost pass out a lot. For a while I would pass out multiple times a day, and had tons of tests done, but nothing was found. Then I stopped.

I am super shaky and clumsy and am always tripping over things and bumping into things. I have ZERO balance.

My hands and legs/feet often tingle, especially when I black out and start to pass out.

I have also have horrible acid reflux for as long as I can remember.

I am depressed (because I NEVER feel good and NEVER have any energy. Every single day is hard to get through)

I also get stressed out so easily and I am very irritable and easy to snap. When I was younger I was always so sweet and nice. Its because I feel so horrible.

My joints are always hurting. They ache all day long. Wrists, knees, and ankles. Fingers also, a lot of the time.

I am lactose intolerant.

I also have asthma and a lot of environmental allergies.

Everything have been progressively getting worse. It ruined my marriage. My ex always said I was so lazy, but I was actually doing as much as I could. He never realized just how tired and horrible I felt. ALL THE TIME! These problems are ruining my life!

I have had tons and tons of tests, scans, and seen a lot of different DRs and specialists. Everything always comes back normal and they can never find anything wrong. I have always been told its nothing and that I am depressed and if I got a life I would feel so much better. Well I am depressed because I feel like crap all of the time! And I would have a life if I didn't feel like crap all the time! I am 21 years old, I will be 22 in the middle of June, but I feel like a 50 year old! I shouldn't have this many problems and I have had them for so long!

I feel like a hypochondriac because of all the things wrong with me!

Even though the test was negative, does this sound like Celiac Disease?

[Kim69]

Hi! Am so sorry that you have had so many problems for so long. Certainly your symptoms sound like Coeliac disease and also perhaps fibromyalgia (just a thought).

I am 40 and have been diagnosed with a biopsy for about a year. Before I was diagnosed I remember saying to my husband that I felt like I was 80! I asked him to take me for drives in the evening so I could get out of the house!

I guess you have had ultrasounds to rule out tumors?

You could get a repeat blood test done or ask for the endoscopy to get a biopsy to rule out coeliac disease.

A healthy diet with gentle exercise (say walking) would be good. Perhaps after you have had the tests if you decide to get them done, you could begin a gluten-free diet. You could be gluten intolerant and not Coeliac.

Ps I don't know for sure, but it seems to me that people who are intolerant see improvement more immediately than

newly diagnosed coeliacs.

Anti depressants are often used to treat pain like you have (and I too have just started on cymbalta in the hope of reducing pain as well as depression). Don't rule it out. I know it can feel like your dr is saying your are crazy but that is not the case. In some cases a person feels pain where another would not - all due to perceptions in the brain. Anti depressants (some) can reduce the pain you feel.

Of course first of all you do need to make sure that you are not actually suffering from some treatable illness. Sounds like you are doing your best - though perhaps this forum will come up with a few more avenues to explore. Good luck and please let us know how you go.

[ravenwoodglass]

Even though the tests were negative do give the diet a good strict try for at least a couple of months. False negatives are not uncommon and delayed my diagnosis for many years. Celiac does usually have a trigger and emotional stress can be that trigger. Feeling the way you do isn't normal even for a 50 year old. I was diagnosed finally in my late 40's and am now healthier than I was throughout my entire life. You can see the long list of diagnoses that I had prediagnosis which included a lot of the issues that you are describing. Pretty much everything resolved after a few months of being very strict on the diet.

[txplowgirl]

iloveAMM,

Hey there, it sounds alot like it plus Fibromyalgia. Find you a Rhumatologist if you can because they are the ones who usually diagnose Fibro.

Or just go gluten free. I've had this since I was 8. Major mental trauma is what started for me. I had almost if not the same symptoms as you. I went gluten free 2 years ago and I am way better, I don't feel like i'm dying now.

If you have Fibro, not only do you need to be gluten free but us Fibro sufferers have to avoid the nightshade vegetables, Soy, Dairy, MSG, Aspertame, etc.

Since I was 44 when I went gluten free it took me a good 3 months before I sarted feeling way loads better. Being as how you have years of damage to your body it might take up to at least 3 months before you feel better. But I can guarantee you it will be worth it.

((((hugs)))) to you.

Txplowgirl

[Debbie B in MD]

iloveAMM,

If you have Fibro, not only do you need to be gluten free but us Fibro sufferers have to avoid the nightshade vegetables, Soy, Dairy, MSG, Aspertame, etc.

Txplowgirl

I am wondering what is in your etc.? I was diagnosed with fibro in September 2010, but since going gluten free, most of the symptoms have gone away. I am nightshade, MSG, aspertame, milk (not cheese and sour cream) free.

[deaja]

A lot of your symptoms sound very similar to mine. I get my bloodwork results on Monday, but my doctor said they aren't always 100% accurate (especially I guess since I'd already been cutting way back on gluten when I suspected that might be the problem). So I've been gluten free for the past week while waiting for the diagnosis and a lot of my symptoms have gone away or are much less. So even if my blood work is negative, I'm going to keep doing this unless they find something else.

[cahill]

I would strongly recommend getting a copy of your blood work.

my daughters doc told her he was testing for celiacs and that the test came back negative .When she went in to get copies of the test she found out he NOT test her for celiacs. He tested her for anemia and decided that since she is "within range" she could not be celiac She now has a new doc.

[txplowgirl]

I am wondering what is in your etc.? I was diagnosed with fibro in September 2010, but since going gluten free, most of the symptoms have gone away. I am nightshade, MSG, aspertame, milk (not cheese and sour cream) free.

Hey Debbie, caffene, and sugar. I believe those are the worse ones to kick for me, lol.

[momof2peanutz]

I bet if you do cut out gluten, you will feel a million times better. All of these sound like "over"-reactions to gluten, if you ask me. Read "The gluten-free Diet" by Elizabeth Hasselbeck and "Dangerous Grains", Braly. All the stuff you describe is in these books.

Best of luck to you. There's hope.. like I said, I can bet you you'll feel tons better cutting gluten anyway. I have joint/ muscle pain on gluten and terrible constipation, dizziness, just feeling of overall awful sickness.