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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,927
    • Most Online (within 30 mins)
      7,748

    drw80whz
    Newest Member
    drw80whz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • 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.