New To Site, Many Unexplained Symptoms

[IndyKim]

Hi there,

I'm new to this site. I have a range of symptoms that may or may not fit a diagnosis of celiac. However, I continue to hear that I have Irritable Bowel Syndrome, but what I'm experiencing seems to go further than that. Any insight would be greatly appreciated.

I had a blood test today (I don't know how long until I will get those results though) and next Thursday I'm going in for a colonoscopy. My new GI doc is going to biopsy the ileum this time since my last biopsy two years ago was negative for celiac. That biopsy did show that I have chronic atrophic gastritis and the endoscopy I had at the same time showed I had erosions throughout my esophagus and duodenum despite not having any reflex or heartburn problems. They also removed a tubular adenoma colon polyp.

I have hypothyroidism and medullary sponge kidney also. Those were diagnosed in the early 2000s. After a 1997 endoscopy I was treated for H. pylori although two tests since have been negative. I have a history of chronic sinusitis and had sinus surgery in 1991 to clear the impacted cavities and remove many polyps. I do know I have at least two polyps in one sinus cavity again based on a CT scan.

My ongoing symptoms are chronic abdominal pain usually in the area of the gallbladder. They've checked my gallbladder numerous times though and nothing unusual there. My bowel habits alternate between being constipated for days to having to go to the bathroom after ingesting even the smallest amount of food. I often have migraines and muscle aches, which docs have labeled fibromyalgia.

Instead of losing weight, I continue to gain weight though I'm very active. I walk at least two to three times a week (about 2-3 miles per walk) and I take Tae Kwon Do twice, sometimes three times a week.

Here goes the rest of the list...I have multiple vitamin deficiencies with zinc and iron (and ferritin) being the worst besides Vitamin C, which I've had docs tell me not to pay attention to since it's water soluable. I have elevated B5, maganese and folic acid levels. My amino acid levels are all over the place. I take enough supplements to choke a horse!

A few years ago I was misdiagnosed bipolar and now I'm off all of the meds they had me on for that. I do take a low dose of medicine for ADD and anxiety otherwise I'm easily distracted and irritable.

I don't think these things are related, but I have spinal stenosis and three bulging discs in my lower back, plus arthritis which one doc said was from being pregnant three times. I also have hip bursitis that flares up every now and then. With more regular exercise, that's been more under control.

My skin is super dry and my hair seems brittle and very dull looking lately.

All in all, my body just keeps piling up with symptoms and I can't imagine all of these things aren't related in some way.

My grandmother had colon cancer, Parkinson's disease, mouth ulcers and other symtoms that are somewhat characteristic of celiac. She died in 2006, but I wonder if she might have had celiac and no one ever thought to check for that and link her symptoms together.

Anyway, that's my novel of an introduction. I know you aren't doctors, but if my experience sounds at all familiar to anyone else's let me know. And please let me know what I can do to get myself feeling better.

Thanks much,

Kim

[IndyKim]

Ha! I'm replying to my own post, but I forgot to add that I'm on Nystatin to kill off candida in my gut. I was on some really strong med for that that made me totally sick, so that's why I'm on the Nystatin now. I take Probiotics daily along with my other vitamins. -Kim

[rinne]

Hi.

What a long list, it rivals my own long list or I should say the list I had at one point.

What I would suggest is a very simple diet for three days, unprocessed foods prepared without condiments, basically a gluten and dairy free diet, no sugar or chocolate, avoid too much fruit, eat lots of carrots cooked well, chicken, ripe bananas.

This diet will give your digestive system a rest and if you are in pain, it needs one.

When I ate gluten I was heavy and no matter what I did I couldn't get the weight off.

I just came across an article about Schizophrenia which said that there was Dysbiosis in all the guts of all the patients they had autopsied with Schizophrenia. Our gut affects the wellness of our whole being. If you have time read the signatures of some of the posters, you will see a cascade of illness finally diagnosed as Celiac.

The tests are often inaccurate and/or the doctors are. My sister was diagnosed with Celiac by endoscopy and her doctor told her to try to avoid wheat, he did not mention gluten and he did not tell her that her family should be tested. Much suffering could have been avoided if he had.

I hope you feel better soon.

[IndyKim]

Thank you for your post rinne.

I have definitely been sticking to a bland diet since the beginning of January when I was hospitalized for a day with severe abdominal pain, diarreha and bleeding. It took me about a week to recover from that bout of sickness, which was the worst episode I'd had in a while. The bleeding has continued though, which has me most concerned. Having been dealing with GI problems for years and years, I've learned to manage through the pain and I guess I'm just used to my unpredictable bowel habits. They are annoying, but life has to go on. I'm a single mom of three kids so the stress of taking care of them, working full-time, trying to take care of myself, and the litany of other daily responsibilities doesn't go away even when I'm not 100%. Not that I've been 100% for a long, long time.

So hopefully there will be some answers after my test next week and when the blood work comes back.

With two diagnosed autoimmue disorders already, hypothyroidism and chronic atrophic gastritis (which elderly people usually get and I found out I had in my mid 30s), I can't imagine what might be next. I know changing my diet would be a big change, but if it meant I would feel 'normal' again, it would be worth it. Honestly I forget what 'normal' feels like though.

Again, thanks.

Kim

[curlyfries]

For me, bleeding was caused by sugar......including fruit. That's what I believe and I'm sticking to it because I am not having any problems, now. I am hoping that once my gut heals, I will be able to reintroduce those things. When I had the first colonoscopy I told the doc it seemed tp happen when I ate fruit......he had never heard of anything like that, and pretty much dismissed it. I was diagnosed with internal hemorroids, had them removed, but it was only a temporary fix. I keep up on the colonoscopies since my mom died of colon cancer, so I know it's not that.

[ang1e0251]

You sure do seem to have many of the symptoms that many of us do. You said you had a blood test. What kind? You are having a colonoscopy. Are you having an edoscopy with biopsies for celiac disease?

What you may find from reading through the forum is that many false negatives happen with the blood test and sometimes with the endoscopies. So I'm saying that even if you are given negative results for those tests, don't think that that rules out a problem with gluten. If that happens, you may want to consider an elimination diet for gluten to decide for yourself if it is helpful. It's a perfectly healthy diet and can't hurt you. You don't need the dr's permission to try it.

When you get your test results, ask for a copy. If you post the test results here there are some persons who are top notch at reading those results.

Good luck to you and keep us posted.

[bjn555]

So sorry you are dealing with so many ailments. I'm intrigued about the anti-fungals causing such a strong reaction...sounds like yeast and yeast die-off. When I first began fighting yeast and the yeast began to die, I became violently ill. When yeast dies it puts off 70something toxins, like formaldehyde and carbon monoxide, to name only two. I thought I might die I became so sick. However, two years later I am gluten, dairy, sugar and yeast free and no longer have kidney problems, muscle and joint pain, mood swings, bleeding ulcers, mouth sores, fatigue, sleeplessness, etc. etc. A doctor once told me that if sugar can eat holes in enamel coated teeth, just think what it does to soft tissue. Sugar feeds yeast. I suspect the Nystatin is keeping your yeast on a "low-simmer". Do you ever have headaches that get worse or better with bowel movements? I would be constipated for days, with gall-bladder pain, then when the poop finally came so would the migraine from "die-off'. By the way yeast can be very constipating. My daughters dieted and exercised themselves silly, but kept a gut, until they got rid of yeast. Check into it. It requires strict eating and you may get sicker before you get better, but it is so worth it. Best wishes!

[bjn555]

PS......forgot to tell you....I don't have chronic sinus infections anymore either! Let us know how it's going for you!

[IndyKim]

Thanks for your post about the yeast overgrowth being a potential problem. I had another doctor's appointment yesterday, my doc who is actually a board certified psychiatrist but specializes in biopharmacology. He believes in correcting the root of problems instead of simply medicating forever. He's the one that has me on all of the supplements for my vitamin deficiencies, which I know are partly because of my chronic atrophic gastritis. It causes the stomach lining to become smooth, inhibiting absorption, and the stomach produces very little acid in this state. There is no treatment for this type of gastritis since it is an autoimmune disorder. Essentially the immune system has turned on the stomach. What scares me most is that this is usually something diagnosed in the elderly and I was 37 when a biopsy showed I have this. Also, the chance of getting gastric cancer is around 40%. So, it is certainly time for me to make some serious changes.

Doc is running reverse T3, adrenal panel and cortisol blood tests. GI doc just ran the celiac panel and my ferritin levels along with a few other tests I don't recall. So hopefully I'll get down to the bottom of this soon.

In the meantime, I'm preparing my kitchen to go gluten and sugar free, and have my kids do the same as much as possible. The psych doc recommended that and he upped my intake of probiotics and added that to the kids regimen of supplements. This is going to be trying I'm sure, but maybe it will improve my oldest son's ADHD, aniety and mood disorder (he has a learning disability and vision problems too) and my daughter's ADD. I started talking about how we were going to make cool new foods and no one seemed thrilled.

So I guess we'll see how it goes. Keeping my fingers crossed. And actually looking forward to clearing out my gut for my colonoscopy next week. It will give my insides somewhat of a fresh start and maybe some of my pain will subside.

Thanks again.

Kim

[rinne]

Wishing you well on this healing journey.