Help Please Im So Sick And So Desperate

[confusedandlost]

ok ill try to make this as short as possible. at this point im DESPERATE for help.

I am a 21 year old female. 5'7", 104 pounds. european descent, if any of those help.

I went to boot camp for the marines and came home after two months because i got hurt. Right after i came home i was sick all the time. This was july, I was very nauseas and tired, and it was up and down.

Almost a year later I got mono, and ever since I had mono I have not been the same. I was tired constantly and slept almost constantly for months, and then I had very bad nausea and malaise, and weight loss. After that I was sick for months straight with almost no relief, and it was always the worst in the mornings. Finally this past summer we figured out we thought I had celiace disease.

I have been gluten free (VERY strictly) ever since and was doing much better, but almost like clockwork about every two months I get really sick again for a couple weeks. Before going gluten free i had dizziness, weight loss, severe, almost unbearable nausea. My feet would go numb and turn purple almost constantly, and tingle. I always had a mouth full of canker sores, 5 and 6 at a time constantly. Brain fog, difficulty concentrating, anxiety etc and the list goes on. Celiac fit every symptom I had and I was doing 10000x better gluten free, no more anything, except now I get sick about every two months. I get severe nausea, I get dizzy,weak, super pale, weight loss, vertigo, myoclonus in my arms, migraines... but why do i get sick every couple of months? I can't take this anymore. Ive been tested for everything under the sun and all my vitamin levels are fine except my vitamin d is a little low. other than that they're good, so why am i getting these terrible sick spells? I'll have heart pain and palpitations also. I've had heart pain my whole life but no doctor would check into it because they say its nothing, and they say my heart rate and blood pressure are fine.

I dont have the pains and palpitations like i did before, the palpitations i almost only get if i accidentally ingest gluten (from cross contamination), and I do still get the pains sometimes though. I'd been pretty much chronically constipated my whole life, if that makes a difference. not anymore since going gluten frree now i think im a little more "normal" but they wondered before if maybe i had a parasite because i almost never went to the bathroom. It is a lot better since gluten free, but I don't think i go every single day, i honestly dont like track it or anything.

Why am I getting sick even though I'm so strict with my gluten free diet and take vitamins? Every couple months I get it, it's like a cycle. Did I get a parasite or something from boot camp? they made me drink dirty water full of weeds and i had to spit out leaves and stems, they made us walk around on red ant hills and we had cockroaches in the squad bays, it was not a clean experience thats for sure. My problems started after I was there, so did i get something from south carolina?? Any ideas at all?

could that mono have messed me up? It was ever since I had mono that I've been sick. Boot camp and mono are my top two thoughts, I think there has to be a reasonable explanation for this. I'm DESPERATE for help, I can't work or live like a normal 21 year old because I'm bedridden so often. PLEASE help me, anyone. Btw, I am prone to kidney stones and UTIs, also ovarian cysts sometimes, and I do get kidney pain sometimes if that makes a difference. I've been feeling it (kidney pain) when I've been sick the past couple days. I got a blood test which was negative, i got it months after going gluten free. Tried the gluten challenge but got too sick and could not do it.

Severe nausea

weight loss

paleness

weakness

dizziness

myoclonus in arms

lack of motivation

[Marilyn R]

Hi Confused, welcome.

I'm sorry you've had such a rough time. Have you explored other food allergies/intolerances? There could be something else bugging your system and causing you problems.

Some people have figured out what's getting them by an elimination diet and keeping a food diary. If you Google that, you'll get a more precise explanation than I can give you right off the cuff.

Or you could try cutting out the common food intolerances (soy, dairy, alternate grains, tree nuts, legumes, nightshade vegetables one by one for a week or so at a time while keeping a food diary. If you feel better by elimating one of those, don't add it back in when you try eliminating the next one.

Good luck, hope you feel better soon.

[mushroom]

When you say you "get sick" I assume this is a different response from what you get when you get gluten cc. What is it that happens to you? Is it how you used to feel before, or different symptoms?

[IrishHeart]

Were you seen by a Gastrointestinal doctor? Is that who told you it was celiac? Did they do any barium studies?

I am wondering if you do not have something else going on in your gut. An infection of some kind (given your description of boot camp) You said "they thought it was an infection"--who is they? and you mean like giardia??

Your post provokes lots of questions, hon. We want to help, but there are so many variables.

Also, do you take probiotics? You gut may need some beneficial bacteria if you were given any anti-biotics.

[MitziG]

I would definitely consider parasites, particularly Giardia as it is common in water. I believe there is an accurate blood test for this. I would also insist on a stool screening for common parasites. Giardia can have waxing/waning symptoms, so that is what seems likely to me, but of course it could be many things. If you dont get answers from your medical doctors, I would go through Enterolabs. They have a pretty thorough parasite screening I believe, as well as screening for other food intolerances.

[Harlygirl]

I was treated for Giardia. I picked it up while in Colorado visiting my sister. Who would have thought it? Right? But the test for the parasite is tricky. It will show a false/negative. I really hope this helps.

[GFinDC]

Maybe lyme disease? It certainly is possible from tick bites in the woods. I don't know if the periodic symtoms fit it though. There are some threads on lyme disease on this board for info.

[heidi g.]

Omg you poor thing. It does sound like a parasite. If you live near a health food store you can pick up a parasite cleanse. If it gives you some relief (because it might take some stronger medications) then it's most likely a parasite. If this makes you feel any better, I barely have any relief on the gluten free diet and my nutritionist said I should see a psychiatrist because anxiety can mess up your stomach pretty bad. When I first got sick I was diagnosed with anorexia because I wasn't eating because of my stomach. 104 pounds is NOT a healthy body weight. I am 5'8 and I was 120 pounds and diagnosed with celiacs. If you don't eat regularly, you won't go to the bathroom regularly. I suffered constipation issues myself and I actually still do. Probably because I only eat once a day. Maybe you have post traumatic stress? Keep an eye out for parasites in your stools (some could be microscopic) and eat light, fresh foods when you can. Some of the symptoms you described sound like what I feel like when I have a panic attack. Alot of doctors suck so sometimes you have to experiment and try different things. Keep a journal on what vitamins you take, what doesn't make you feel sick, if you decide to do a parasite cleanse, etc. I'm 21 too! I know how it feels :/ I was not expecting to feel like this until I was older.