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

Frustrated, Scared, And Exhausted


SickABeinSick

Recommended Posts

SickABeinSick Newbie

Hey Everyone, First off all your posts have been extremely helpful and informative, it's comforting to know i am not the only one out there feeling this way.

Anyways, i am having a difficult time determing what exactly is wrong with me. So any help would be GREATLY appreciated.

I'm a 22 yr old female, I had my first stomach issue when i was 14, basically ecruciating gas pains followed by diarreah. Only one night, not even sure what I ate. However in the past 2 years those same pains have come back. And have grown progressively worse over time. Usually the stomach pains would be once every four or five months, then to two or three months, then once a month, and now (for the past 3 months) they have grown to about 8-10 times per month. It used to happen immediately after eating out, especially Japanese Hibachi or Italian. The pains are so bad that i cry and crawl into a ball on the floor. I suffer from constipation and it is hard to get a BM after the pains, so i use suppositories to help. More recently the pains have ranged from mild to severe depending on what i eat. And have started from foods that i prepare myself as well.

Other side effects that bother me are:

- The increase of blinding headaches, twice a month, lasting for 3-5 days. Nothing works for them. Started in October.

-Fatigue during the day

-Almost constant low grade fever of 99.5

-Canker sores, (but not sure if it's because i could be biting me mouth in my sleep)

-Restlessness at night

-Panic Attacks and Anxiety

-Muscle pain in my legs and left arm. Sometimes so bad that i find it hard to push the peddle when i drive. (does not happen very often)

-Tingle in my left arm that runs down the entire length even into my fingers.

-Neck pain, shoulder and neck muscles are always tense and sore.

-Bloating almost always,my tummy is never flat and im very thin and work out regularly.

-Noticed that my vision has gotten pretty blurry in the past year, more so in my left eye. Hard to drive at night too. And sometime my eyes hurt.

-Sinus infections, congestion almost everyday.

-Feeling of a heavy chest often (could be anxiety)

I am so tired of not knowing what is wrong with me, it is a never=ending battle and my family/friends/and boyfriend just say im a hypochondriac and think i am crazy or making it up. IM NOT!! My symptoms are real and i want help!

Ive been to 3 gastros who said i had IBS and put me on Meds that never worked.

Ive been to a neurologist for the headaches, had an MRI, and he said its prob migraines.

I always pass physicals with flying colors.

WHAT IS WRONG WITH ME!!!! :(


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Welcome to the Forum!!!

I say try to the gluten-free diet. You have absolutely nothing to lose, except maybe your pain. I had the headaches, too. Nothing made them go away, from tylenol, to excedrin, NOTHING!!! and now, I know that exact headache, which I also get when I eat eggs (I'm allergic to egg whites).

When I did my elimination diet, I didn't have a headache for a whole week... WOW! and the last thing I reintroduced was gluten. Within an hour or two, horrible headache that had me laying on the couch for the rest of the night. I also have sinus problems, which, honestly, I just started taking Zyrtec and that has seemed to be the final piece. My sinus pressure has started to go away.

So... there are many of us who think that IBS is merely a symptom, and once you found out what causes the irritation, you can begin to correct the problem. I think the fact that you are on this forum shows that you are suspect that gluten could be your problem. So, try it for 2 weeks. See what happens. Your symptoms may not go away entirely, BUT, they may begin to improve.

Again, welcome, and feel free to ask ANY questions!!!

Mom23boys Contributor

I've had almost all the symptoms you have described...especially the rolling into a ball on the floor. The pains were so horrible and I would just lie on the floor for hours. I couldn't even get up into bed.

Mine is mostly from milk although we have just learned that the "leftovers" are from gluten. If you haven't started, you may want to consider testing both.

CarlaB Enthusiast

Check out this thread, this also fits your symptoms. Open Original Shared Link

Did anyone ever test you for celiac disease? It's such an easy test ..... and it would answer your question on whether you have it!

Don't give up till you find what's wrong .... I didn't and today I'm feeling much, much better. Hang in there, it's tough, especially when no one believes you because your symptoms change faster than the weather.

Ginsou Explorer

Your symptoms certainly sound like celiac and/or lactose intolerance. I remember those days many years ago when I also was in excrutiating pain rolled up in a ball and holding my breath....the pain was on the level of childbirth pain. A simple lactose intolerance test will determine if lactose is a problem. Alternating diarrhea and constipation and gas have always been a problem with me. I developed the lactose problem 30 years ago.

This past year I developed additional abdominal pain and distention 24/7, sharp stinging pains in various parts of my body that only lasted a few seconds, tingling mostly up my back,muscle or nerve twitching, nausea, heartburn that did not respond to Nexium/Protonix. After having normal blood test results by a gastro dr. I had the Enterolab test done (I had no insurance) and found out I have double celiac genes, also positive for casein and soy!! I had previously been diagnosed with IBS and/or diverticulitus and the meds prescribed did nothing but make me sicker. Without the Enterolab test, I would have not known what the real problem was for years!

This forum is the best site for info.....you really should be tested....and if the blood tests are negative, have further testing done to rule out celiac.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,076
    • Most Online (within 30 mins)
      7,748

    Monica L
    Newest Member
    Monica L
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • 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.