Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help Please Im So Sick And So Desperate


confusedandlost

Recommended Posts

confusedandlost Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

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 Proficient

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 Veteran

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 Enthusiast

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 Newbie

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 Veteran

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



heidi g. Contributor

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,837
    • Most Online (within 30 mins)
      7,748

    Juliane
    Newest Member
    Juliane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.