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, Reassurance, Something.


Lorella

Recommended Posts

Lorella Newbie

From roughly the end of Feb 2011 I started on stomach cramps, diahorea pretty much after every meal, bloated to the point my jeans wouldn't do up, sick and extreme fatigue. Great 21st birthday present. I went to my doctors mid March, he decided I needed bloods running for celiac.

At the end of March I was hospitalized for dehydration, was at the point where they were trying to put IV fluids in and my veins were just collapsing. Was told a million different things, from it being my gall bladder, UTI, food poisoning, the works.

The celiac tests came back negative. But nothing has changed, now I'm being told its IBS with a senstivity to gluten/wheat.

Symptoms haven't changed however, I'm now scared to eat, have lost around 5 kilos in a few weeks and all I want to do in sleep. A few days ago I lost complete control of my bowels which worried me. I went back to my doctors and I'm now being tested again for celiac/chroms/anemia and some other bits and bobs.

I'm scared, I don't know anyone else like this, the cramps hurt so much and because of all this I've had to take time off my new job. I feel so depressed, sleeping for sometimes 17 hours because I just feel exhausted.

I do have an appointment with a surgeon in June, but I hope they can shed some light on this before then.

Can I eat/take/drink anything to ease the cramps/bloating/sickness/indigestion? Can I take anything to boost my energy levels and make me feel more human? I feel like I'm not here anymore.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Hun, you need to eat something :( endless cycle and all of that.

Stick with all natural things:

Sweet potatos

Carrots

Veggies in genral (all cooked, raw will kill your system trust me)

Drink lots of water to 'flush' out your system. Stay away from all things processed.

I understand. I have celiac and am currently experiencing something similar. It sucks :( BUT! I will say going gluten free has helped. Perhaps trying that would help you too.

Also, it may be a good idea to look into a new doctor, different views ya know?

TheSword Newbie

I agree, stick to a strict veggie and meat diet, at the very least cut out all gluten and dairy, and see how you are in a few days, I had near immediate relief when I changed my diet, in 2 days all my bloating, IBS, indigestion, diarrhoea disappeared.

rgarton Contributor

I found eating plain boiled rice, (I know boring but sensitive on the stomach and bulks up stools!) occasionally with leeks as a main meal and eating bananas is also soothing on the stomach and can help prevent diarrhea. Also sipping plain black tea with some sugar helps ease the nausea. Like shadowicewolf said drink lots of water keep you hydrated.

I wouldn't rule out celiac disease, my mum got 4 negative blood tests and finally went for a biopsy and got a positive result. I also got told i had panic/anxiety induced IBS for 2 years before finding out i was celiac just because i didn't push it any further, finally i did last december and got diagnosed in january.

As for the cramps, use some rose essential massage oil and rub your tummy gently clockwise and hot water bottles! The rose helps calm you down and helps ease the inflammation.

I really do feel for you and i would push for a biopsy for asap! Just demand one! :) Good luck. x

Lorella Newbie

Hun, you need to eat something :( endless cycle and all of that.

Stick with all natural things:

Sweet potatos

Carrots

Veggies in genral (all cooked, raw will kill your system trust me)

Drink lots of water to 'flush' out your system. Stay away from all things processed.

I understand. I have celiac and am currently experiencing something similar. It sucks :( BUT! I will say going gluten free has helped. Perhaps trying that would help you too.

Also, it may be a good idea to look into a new doctor, different views ya know?

Hey :)

Yeah I have been eating gluten free but I'm not entirely convinced it's JUST gluten/wheat thats giving me issues.

I'd never thought of trying another doctor, maybe thats something I'll have to look into doing tbh.

Thanks :)

Medusa Newbie

My whole family do dramatically better on gluten free food, but all of us have had negative tests at some time. The tests just aren't that reliable, yet people put such great faith in them! I feel quite strongly that the most reliable test is going properly gluten free for a while and seeing if it helps - it may take some time to feel better if the damage to your system is severe, so hang in there.

Gluten intolerance appears to be strongly genetically linked, try asking for the genetic testing. My daughters and I have the genetic predisposition for gluten intolerance, so we get a bit more respect from the medics even if our bodies won't cooperate and give a nice positive result all the time on their other tests!

You mention you have a new job - stress makes everything worse, especially conditions like celiac. Stressful events can even trigger the onset of celiac in susceptible people. My daughter started getting problems with her stomach when she was getting bullied at school. Coincidence? Try and find ways to lower your stress levels which work for you. (I'm a yoga nut!) I know it's not easy when you are feeling so ill.

I second the idea of finding another doctor. We got nowhere until we found a sympathetic doctor. They can't be specialists on everything, but even so it's alarming how little many of them know about celiac.

I was really ill when I was pregnant with my first child. When I got really dehydrated I used the reydration mix they sell at the pharmacy for kids with diarrhea. A teaspoon of sugar and a pinch of salt in a glass of warm water works just as well. For some reason it's easier for your body to absorb than water by itself. Arrowroot powder cooked into a runny sauce with water stayed down too, though the flavour leaves room for improvement! Rice water works too.

Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,915
    • Most Online (within 30 mins)
      7,748

    marcusdarrell1
    Newest Member
    marcusdarrell1
    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

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.