Venting Slighty But I Do Still Wonder

[Kylie]

Hello all,

Well i hate to sound whiney in my first post in this section, but seeing that i am the only Celiac in my family and i know no one who has Celiac, i feel very alone sometimes!! I was diagnosed almost three years ago and it was the best thing i ever did. I had been sick for months, lost close to 15 pounds but looked like i had gained close to 20 from all the bloating and swelling. The first year of being gluten free was a great time and I have the best gastro doc anyone could ask for, however, it only last a year. Since then, I have been hospitalized for random things, needed more and more biopsies, seen an infectious disease specialist, was paralyzed for close to two weeks and nearly failed my senior year of high school because I missed so many days of school. In a year I managed to contract a strain of mononucleosis (sorry for the spelling!) that landed me in the hospital because my tonsils swelled so much I couldn't breathe. I missed a month straight of school, was not able to celebrate Thanksgiving or Christmas, and to this day am still tired, sore, and pulling strains of the mono virus (Epstien Barr) up in blood tests. I have also needed my nose cauterized because I had such bad nose bleeds that I had to be sent home from school because I had lost too much blood. I seem to catch every cold that comes around (currently I have a cold, ear infection, and possible strep in the middle of the summer). The most interesting of them all however has to be the paralysis. I woke up one day with very sore legs which I thought were growing pains, I'm 5'8 and 18 years old and still growing. By two days later I could barely walk the 10 steps it took to walk to the bathroom. Because the pain was so bad, I managed to trip down the stairs and bruised my tailbone and sprained an ankle. The day after that, I could not get out of bed and had to use a wheelchair to get to my various doctors appointments to try and find out what was wrong. It did eventually go away after about two weeks but I am still having pain and on the occasional few days, I won't be able to walk because of the numbness and pain. And the grand finale to this whole saga (and probably the reason I am most distressed) is that I will have to have another colonoscopy on Tuesday (I had one a little over 2 months ago) because I have a bleed somewhere in my small or large intestine. This will be my third endoscopy/colonoscopy since my diagnosis! I am really getting tired of all of this, I have tested negative for Crohn's, Lupus, ticks, Lyme disease, various poisonings, and pretty much any disease you can think of. In a few weeks I will be tested for Chronic Fatigue Syndrome and hope that maybe it will shed some light on an answer. Does anyone else just seem to catch every cold, cough, disease, and never be able to get a handle on their Celiac? I follow the strictest diet that I maintain personally so that there are no mistakes. I eat a healthy diet and exercise regularly (that is when I can get out of bed). I am very fed up with feeling like I am 60 years old when I am only 18. Does anyone have any advice or a morale boost because I think I am about to lose it if I find out that one more thing is wrong but no one can explain why. Any help would be greatly appreciated, and my apologies for the rant, I am just looking for someone who understands.

[confusedks]

Ugh! I'm so sorry you're going through all of this! I am 17 and I am having a lot of physical problems also. Doctors have no idea what is wrong with me. They say it's one thing, but then they treat that problem and it doesn't work! I may have to have back/ SI joint surgery in a few months and am very worried! If you ever want to talk, you can email me knshore@hotmail.com or IM me knsgoestonz511

Kassandra

Feel Better!!!

[tom]

Hello all,

Well i hate to sound whiney in my first post in this section, . . . .

Hi Kylie,

Let me be the first of many to say there is never a need to apologize for or spend a moment worrying about sounding whiney.

Seriously.

. . . .. . I am very fed up with feeling like I am 60 years old when I am only 18. Does anyone have any advice or a morale boost because I think I am about to lose it if I find out that one more thing is wrong but no one can explain why. Any help would be greatly appreciated, and my apologies for the rant, I am just looking for someone who understands.

I remember a 3 month period where I was sure I'd aged 15-20 years. Or was it a 6 mo period? Memories weren't filed away properly for a time there.

I can relate at least a bit anyway. But I didn't go thru what you have or are still having to deal with.

I know it's natural to feel the need to apologize like u have, but don't u ever believe it's necessary - whether u write it or not.

Most of the people here have been thru some pretty rough times and are all more than willing to help when they can and sympathize when they can't. (And often both)

I wish I had more to offer right now. I think all I can add is that CFS isn't a real diagnosis - it's a symptom.

Something else is causing the fatigue.

There is an answer and it can be found.

Best of Luck, Kylie.

[trents]

Kylie,

As others have said, you need to vent. Psychologically, its appropriate and healthy as you are grieving something - the loss of the normal energy, health and vigor that ought to come with youth. Don't give up, however, you may very well have it yet again.

Have you had any systematic allergy testing done? And does your (or your parents') insurance cover the services of a naturopathic doctor? I can't help but wonder if what you are suffering is tied to some toxicity problem or nutrient defficiency.

God bless,

Steve

[Kylie]

Thanks Steve, I haven't thought of that, but I will look into it. Currently the only relief I get is from going to acupuncture, the best hour of my life. Thanks to all for the support, I really appreciate it!

[tom]

Thanks Steve, I haven't thought of that, but I will look into it. Currently the only relief I get is from going to acupuncture, the best hour of my life. Thanks to all for the support, I really appreciate it!

Whew I was SO skeptical going into acupuncture out of pure desperation.

Walked out calling it magicpuncture.

Too too amazing!

[loraleena]

I would suggest a full thyroid panel including thyroid peroxidase antibodies. Hypothyroidism can cause a lot of body pain and fibromylagia. Also nightshade veggies can cause body pain as well. These include eggplant, potatoes, peppers and a few more I am forgetting (tomatoes to I think).

[marciab]

Interesting ... I was diagnosed with CFS / FM back in 1990 partly because my immune system had fallen apart and I would get an URI everytime I exerted myself. Actually in the first few months after contracting CFS / FM, I would get an URI everytime I stopped the antibiotics.

I also could barely walk any distance without my legs forgetting how to walk or feel too heavy for me to lift. My arms were too heavy for me to wash my hair without letting them rest for a few minutes and then trying again. This turned out to be either gluten ataxia or nuerological celiac and has gone away since eliminating gluten. I had a sleep disorder called nocturnal myoclonus (seizures when my body would go into REM) and insomnia which is gone now too. Headaches and pain from head to toe .... The list goes on ....

Bottom line, my body was falling apart too.

Since I went gluten, soy, dairy, corn, eggs and chemical free back in 2005, my symptoms have begun to go away, but I'm not sure I will recover. We'll see.

I wish I could tell you exactly what you need to do, but there are so many theories out there about CFS and so many people with different symptoms that it's not that simple. BUT, I understand that those of us with true CFS are overly sensitive to the things most people's immune systems can fight off. That's how we got the label "Canaries in the coal mine". The best thing you can do is to build up your immune system.

So, if you haven't already, I would recommend detoxing your body using herbs, treat for candida and eliminate to the best of your abilities all known allergens. I'd stick to the milder treatments though since we are known to overly react to all treatments. Weak herbal teas are easy on the body.

BTW, CFS is a real diagnosis, BUT current theory is that CFS is caused on an underlying problem such as undiagnosed celiac, Lyme, food intolerances, toxins, etc. etc. Undiagnosed celiac can definitely cause CFS as it robs the body of nutrients. BTW, How careful are you about gluten ? I am very sensitive and will get wiped out again if I have any contact with gluten. I'm still getting swollen lymph nodes and sore throats regularly too probably from dust mites.

So many people think that CFS is just fatigue but that isn't it at all. Chronic Fatigue is not the same as CFS. See the CDC criteria for CFS.

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Good luck and don't settle for a diagnosis of CFS until all other avenues have been researched. The diagnosis of CFS / FM lead to my other symptoms being ignored. I was severely anemic and since the symptom is fatigue I wasn't tested. Many doctors have an attitude about the CFS / FM diagnosis too, so you won't get the respect other patients do either.

Take care ... Marcia

[gfpaperdoll]

you will find some answers & get better but you will also have to work on things that you can while the doctors are probing around etc. Make sure you do not have any damage from those scopes etc, you know not all doctors do those perfectly...

I whole heartedly support the posts re other allegens, you should explore an organic plain whole foods diet for a bit. go grain free, dairy free, soy free, egg free, nightshade family free (no potatoes) You can do this. You are young & you will heal quickly. If you are living at home & the house is not gluten free - there is a MAJOR PROBLEM for you. get your parents to read on here about cross contamination. The biggie in that situation is that there should never be any wheat flour in the house (or cake mixes etc) because that stuff poofs up gets in the air & you breath it in (it can get in the air conditioning ducts etc) & you will get sick. Also, you do not need to be eating out at this time, if you have to go somewhere take your food with you...

also start taking a B12 everyday. the sublingual is the kind that melts under your tongue & is supposed to the best absorbed for us...