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Weird.. How To Know When Things Are Dangerous?


Pyro

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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.


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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.

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      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
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