I Need Help!

[vegankate108]

Hello, my name is Kate and I am 23 years old. I have no diagnosis yet, because I am waiting for my insurance to start (on November 1st), but I am fairly certain I have Celiac's. I was told that I should get tested for gluten allergy by my boyfriend's mother. I began researching it and it was overwhelming, both in a good way and in a bad way. The good thing was I found a nice list of everything I had been feeling that was related to something very real. I still struggle with the thought "Am I just making this all up? I can't be this sick. I must be crazy." The bad thing was I was forced to notice how sick I really am right now. Since then, I have gotten worse (and I would like to get into that a bit later.)

First, I would like to share my story here and see if there is anyone out there who can relate, or who can offer help/encouragement/advice.

I have no idea how long I have been feeling the way I have, I have been noticing I have no real grasp of time (possibly another symptom?) but I have been sick for a long time. I don't remember what it is like to be well, to have energy, to be normal.

The symptoms that I realized before I ever gave thought to gluten intolerance:

- I am almost always sick.

- I have awful dental problems, wisdom teeth growing in (dentist said I didn't need them out) causing grief!

- I constantly get cold sores and canker sores.

- I have psoriasis.

- I have really achey, knotted neck and shoulders.

- I have been struggling with depression for the past few years.

I thought the depression was due to the fact that my parents divorced when I graduated High School and moved out to college by myself. I think it was in part, because after I moved back home and figured my emotional life out- I got a lot better and felt less depressed.

As I said, I researched Celiac Symptoms, and there are SO many I could highlight for myself:

- recurrent abdominal pain, generally after eating

- acne problems

- anemia

- anxiety and depression (my biggest problem as of late)

- really bad dental problems

- night blindness, getting worse

- randomly seeing things, like flashes or shadows

- bruising easily

- clumsiness and brain fog

- major concentration problems

- psoriasis

- diarrhea, constipation, delayed emptying

- dizziness

- restless leg syndrome

- body parts randomly fall asleep

- sinusitis, constantly

- fatigue-fatigue-fatigue-fatigue-fatigue!

- food cravings, and a HUGE appetite

- gas, but unable to pass it

- headaches

- hypersensitivity and irritability (triggered by anything, but generally touch, light, sound)

- easily overwhelmed

- chronic joint pain

- lactose intolerant (I am Vegan anyways, so that got better.)

- really low sex drive (My poor boyfriend.)

- stress, and inability to deal with stress

- exercise intolerance

I think I might even be missing a few. I can understand the physical things, because I get the absorption issues that lead to vitamin deficiencies and all that. But I am mostly concerned about the anxiety, depression, low libido, and hypersensitivity. I can remember that I am an easy-going, positive, expressive, and understanding person... it is weird to have to "remember" what I am (was?) like. I guess I could deal with all the other symptoms, but these are what are beginning to hurt those around me (and I feel guilty). I just hate not being in control of my thoughts, feelings, emotions, body. My body hates me.

Anyways, I need help. I get super irritated, and not by irritating things. My boyfriend and I are very much in love, but it's like my body reacts to him trying to kiss me or hold me. I know I love him and want to be with him but, like I said, it's my body that can't handle it and then my brain follows. I get overwhelmed with too much noise, too much light, too much anything. I don't feel positive about anything, and my negativity is getting others down. I can't control my anxiety. I get anxious when I'm out in public, in a group, anything. I remember being really social and loving crowds and big groups.... that is SO not the case any more. Am I crazy? Am I making this all up?

If going gluten-free will help me, after I get diagnosed (and I don't know what I'll do if it turns out I do not have Celiac's....), how long will it take for these awful things to leave me and let me be myself again.

Thanks to anyone who stuck it out through this post, and thanks to those who may be able to offer me something.

[adab8ca]

First, I am SO sorry that you are suffering so much. The physical symptoms SUCK, but as I have learned there is some school of thought that believes that celiac is a neuerological disease. All of my symptoms were neurological except for 28 pounds of weight loss in 6 months that was inesxplicable. However, I have since also showed some malabsorption. I have neuropathy in my feet and legs. I developed crushing anxiety, depression and insomnia that with the help of my Dr., some anti anxiety meds and anti depression meds, I am battling successfully. Malasdoprtion can cause the mental distress you are descriging. I also believe that it is totally not unusual for these symptoms to accompany celiac! My suggestions:

1) Get tested-bloodwork

2) If blood work positive, go for biopsy. Don't go gluten free until all your testing is complete (if this is important to you to have a definitive diagnosis)

3) If blood work and/or biopsy are negative, you may want to give going gluten free a shot. You have NOTHING to lose and a whole lot to gain.

I have been gluten free since Sept 1/2010. The panic attacks have stopped. I don't need the sleeping meds. I am still taking Cymbalta for depression, but I am hoping to wean myself off of it in the near to mid future. Some people have had horrible experiences with Cymbalta, to me it is a life saver.

Unfortunately, I cannot tell you how long it will take to feel better. The stomach symptoms may resolve reasonably quickly. The others, it is difficult to tell. The dietician I saw said to give myself a year to feel totally better. I am just taking it one day at a time.

Good luck. I don't believe that you are crazy, something is really going on. Mr Dr. tried to dismiss my symptoms early on as anxiety and stress but I persisted. I know my body and knew something was terribly wrong and after many specialists, a neurologist finally ordered some autoimmune testing that came out positive for Celiac.

I hope you get some answers soon.

ada

[vegankate108]

Oh my gosh, thank you so much. I can't tell you how helpful it is just to be heard. I am fortunate to have a somewhat understanding family and boyfriend, but we're all tripping through this together and I still can't help but feel overwhelmed/isolated.

It is hard to eat gluteny things, thinking they are probably what are making my life such a mess. I will definitely take your advice and wait until I have some for-sure answers... or have at least sought them out!

Good for you for paying attention to your body and your gut feelings (pun?), and for getting the help you needed. I really admire that, and I will keep that in mind if I come across unknowing or uncaring doctors.

Thanks again, so very much. I need all the help I can get!

[SGWhiskers]

I could have written your post except I let those feelings go on for many more years listening to my family call me a hypochondriac. I especially related to your experience with oversensitivity to sensory information. There were 4 years before my diagnosis when my skin crawled from my husband setting his hand on my arm or giving me a hug or a back rub. It was a combination of tickle and pain that made me pull away. This got better fairly quickly after going gluten-free, but I'm still more sensitive than the normal person.

Get the bloodwork and biopsy. If either are positive, consider yourself celiac and never look back. If they are negative, then still give the gluten-free diet a 3 month strict trial. Also, if it turns out that you are negative for celiac, request testing for other autoimmune diseases. Don't let the doctors write you off as anxious, depressed, fibromyalgia, or IBS. You may have those symptoms and treating them is worthwhile, but doctors can be too quick to treat symptoms and miss the bigger picture.

Consider this your window of opportunity to eat out easily and enjoy pizza and donuts. Once you spend a little time on the gluten-free diet, you won't miss most of the old stuff, but it is different at first. Schedule that biopsy now because you don't want to have to eat 2-4 servings of gluten per day for the two month wait it usually takes to get into a GI doc.

You also have the option of going gluten-free today if you know you will be as strict as a celiac needs to be even witout a diagnosis. For me, the diagnosis helps me feel confident avoiding the social pressures of sharing food. It also made me get educated about this disease.

Welcome and keep reading and posting.

[vegankate108]

Thank you. That is very encouraging. I know what you mean about the hypochondriac thing. I just had a big upset about that a few nights ago. It's so hard to take people's criticism when I'm struggling so hard to affirm myself as it is... if that makes any sense.

Also, about what you said:

"Consider this your window of opportunity to eat out easily and enjoy pizza and donuts."

I SO have been. I've never eaten out so much in my life. I didn't even realize I was craving eating out because I subconsciously knew I would (very likely) be saying good-bye to a lot of my favorite restaurants pretty soon. It's hard enough to find things to eat that are Vegan, but oh geez....

I should count my blessings. I live in a place with Vegan and gluten-free options, I have a support system (this forum is turning out to be a big help, too), and if all goes well this madness can all be cured.

Thank you so much for your advice and your welcome. =]