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

Weird.. How To Know When Things Are Dangerous?


Pyro

Recommended Posts

Pyro Enthusiast

My abdominals have been inflammed for weeks, probably even months and here are things I've noticed:

There is a ball like lump under my navel. I've gone to the doctor about this before and he said it's okay, but this one hasn't gone away in a long time.

My ass seems tight. Haha. Seriously though, I can't really get it to go back into relaxing when I sit on the toilet most of the time and I keep trying but the muscles don't seem to let go no matter what.

The muscles will seem like they burn sometimes. Sometimes I can't do a stomach vacuum, and when I do it feels like stuff in there slams back like something slid out of the way rather than just gently easing back.

If I press on my stomach sometimes it'll make me burp and sometimes I'll hit like a "pocket" where some kind of liquid will start gurgling really loud.

When it gets really bad, my feet will get numb when I flex in a certain position. Same with my hips.

At times it'll feel like there is a movement and then what is probably my blood sugar will drop and I get REALLY tired. Sometimes I just have to lay down and will actually doze on and off for like 20 minutes until the spell is done. Then there are periods of weakness (VERY weak, like a rabbit could kill me weak) and dizziness associated with this.

My bladder will hurt and it will feel like my urinary tubes are getting tugged sometimes from the abdominal pressure.

I'm betting this is all pretty common with you all as well, but sometimes I wonder if something really bad is going on. Sometimes I even wonder if a tumor is there because I lost a family member to that exact thing but he had an actual disease so I doubt it.

The healthcare coverage is gone so I can't really go to the doctors to be told that I just need to be patient but sometimes I get really stressed out when I start gagging and dozing out with the random abdominal pains.


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



Celiac.com Sponsor (A8-M):



Pac Apprentice

Did you try to check other common GI problems that accompany celiac? - bad gut flora, other food intolerances...? It sounds as if you were describing my (former) problems, especially the spells of fatigue. Doctors told me the same thing - that it was normal and that about half of all celiacs never get rid of their GI symptoms even on gluten-free diet. 'No, thanks.' I don't believe feeling sick is normal, not any more.

I blamed my symptoms on bacterial overgrowth because I felt so much better when I avoided starch in all forms, at the beginning of my gluten-free diet. It even made me doubt I had problem with gluten itself because there was almost no difference between my reaction to it and to any other starchy food. I also seemed to be intolerant to oxalates, fructose, sodium benzoate, most oils and moderately to cassein. Oxalates were the biggest "mystery" - I found out months later that oxalate levels in plants were strongly correlated with how strictly I had to avoid them. I avoided any food item that became slightly suspicious, ate probiotics (natural only), vitamins, minerals, enzymes, drank herbal teas, anything that seemed to help get my GI system back on the right track.

So far it works. I don't need to avoid any particular food now. It took me over a year, I still have to watch my daily/weekly intake of starches, corn and cassein, and I keep on avoiding processed food, but that's all. Of course I don't know how much of that improvement would happen on gluten-free diet alone, without these additional restrictions, but I don't believe I would heal that quick, if ever, on "normal" gluten-free diet, following my doctors' advice to be patient and wait if it gets better over time.

Pyro Enthusiast

Yeah I'm the same. No starches, no harder fruit, probably no more things like beets and stuff with goitrogens. It really sucks and is getting difficult, but at least summer is coming around and I can have more berries & fresh tomatoes (my life substance) & fresh zuchinni.

After I wrote this post I went on a huge long walk. These always seem to help for some reason, probably with all the water passing through my system and the pressure on my abdomen. This one definitely did the job and hopefully set the stage for my intestines to do the good work overnight.

Also I hear you on the bacteria. When I'm feeling fine I always get confident enough to eat things that would normally scare me (something with a bit of rice or whatever) and they don't bother me so much. But almost any carbohydrate inflames my stomach to hell when things are going bad and I'm not hungry for anything.

If we can all get this down into a system, it would be wonderful if we could share our resources and maybe open our own non-profit practice to help everyone in need. Did you know that Kurt Cobain had the same condition many of us had? That's what drove him to heroin & likely all the poor life choices that led to his suicide. One wonders how much of an impact bringing deeper awareness to public would actually make.

  • 2 weeks later...
Pyro Enthusiast

My intestines and abdominal sheath still give the feeling of crawling over each other, and the area directly below my navel will still feel balled up. I'm not sure if this problem is one that is sticking around or something that just keeps re-manifesting. Either way it blows and is hard to work up a good appetite feeling like a warm, mildew covered tattered old gym sock is bunched up right under your belly button.

I still keep trying my best at doing stomach vacuums (good for inside muscles and organ shape) which will sometimes work but sometimes just make a loud gurgly noise.

I've had stomach problems for years and years but this bout might be the only time that it felt like my abs were put on wrong or pulled out of their normal way.

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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,018
    • Most Online (within 30 mins)
      7,748

    Nancy Adams
    Newest Member
    Nancy Adams
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.