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Help! Related Or Any Ideas?

Salax

By Salax
in Related Issues & Disorders

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Salax Contributor
Salax
Posted

Hi All- I am not sure where to start but I feel like many of you might be like me or had similar experiences. I have been gluten free since Feb 2009 and I was feeling fantastic! I started to experience pain in the gall bladder area in May 2009 and it was finally removed in July 2009 (working at 13%), so digestive wise I feel great! However, I feel like I have gone downhill in other ways. I have it seems a constant infection raging through my body pretty much every month, I am on antibiotics almost every month. I feel like the doctors are missing something. I am tired all the time, feel generally sick (not cold or flu sick, weakness type sick), headaches (every afternoon/evening), loss of appetite, random low grade fevers, pain (sometimes, no always or long term) in the gut area, nausea, and weight loss (not huge, but noticeable). During these times my white blood cell count has always been high and also in my urine. Which generally leads the doctors to think urinary tract infections, however; I have had them before an NEVER experienced those symptoms. I can tell the difference, between having one and not having one.

I am stumped to figure out what is going on in my body and I am SURE something is off. I don

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Wolicki Enthusiast
Wolicki
Posted

Taking a stab at this: sounds like a candida or fungal overgrowth issue. I had those symptoms. I took one round of antibiotics for strep throat and then went down hill. Nausea, weight loss, fatigue, it was terrible. My GI did an upper endoscopy to diagnose it. Then I went on Diflucam for 2 months. There are several drugs to treat it, and I would recommend massive doses of probiotics along with the drugs, if it happens that you have a fungal issue.

Mine was bad because I threw up alot. One time, I aspirated (where you choke a little bit and it goes down your windpipe). Then the fungus ended up in my lungs and I got pneumonia and a cavetary lesion ( a big giant ball of goop) in my lung and was in ICU in isolation for 5 days. Then outpatient IV antibiotics for 30 days. Not something to mess with :blink:

GFinDC Veteran
GFinDC
Posted

Hi Salax,

I went gluten-free a couple years ago and felt much better. But over time I found I still wasn't feeling right. I continued to have GI issues and other symptoms and kind of figured that's just the way it is for people with celiac. Eventually I cut all soy from my diet and started improving. It took weeks but I got a lot better. I had been thinking soy was not like gluten in having to be totally eliminated. But it made a huge difference for me getting off it completely.

So, just saying, that I think soy stinks and if yuze uh eatin it ya shouldn't otter bee.

Course there are other foods that can cause problems too. I'd start by eliminating soy though cause it has such bad effects on the intestines.

Soy bashing over for the moment. :blink:

mommida Enthusiast
mommida
Posted

Salax,

Please keep me informed, as my 7 year-old daughter is having very similar symptoms.

She was diagnosed with Eosinophilic Esophagitis and we apparently eliminated her fodd trigger(s). Her last scope in December show no signs of Celiac damage or eosinophils.

We are waiting on her blood tests. Ultra-sensitive TSH free T4 lytes, BUN, ?, calcium, glucose, Vit B12.

So from those tests I can gather the doctor is testing for Hashimoto's, and Secondary Addison's Disease (unfortunately there are a lot of symptoms there), kidney function, and bsically these are very baseline tests to try and get a direction what to look for.

Salax Contributor
Salax
Posted
  • Author

Thanks all for your responses. I realize it's tough with something like this and I appreciate the feedback. :D

Today I had another flare up of extreme pain in the gut area-generally around the belly button both to the right and left. With horrible back pain, cold sweats, severe nausea. At the time I was driving (or trying too) it was the worst. Lasted 15 minutes and now the pain (its been 12 hours since the flare up) has dulled and nausea remains.

I called the doctors office, they sent me for an emergency CT scan. We are currently looking at acute pancreatitis. Strange, because I don't drink at all and I have no gall bladder, so my thought is either medications causing it or re-occuring infections? I don't know at this point.

The doctor is calling me tomorrow. I will keep you posted. :blink:

Salax Contributor
Salax
Posted
  • Author

Ok scratch that, I have a 3CM mass in my liver... :o

Ugh...MRI here I come.

kareng Grand Master
kareng
Posted

Ok scratch that, I have a 3CM mass in my liver... :o

Ugh...MRI here I come.

Good luck. Let us know how your doing.

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      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
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