Eatl / Food Poisoning / Cdiff/ Sibo?

[CNV2855]

I was admitted to Methodist in Houston after experiencing abdominal pains, weight loss, loss of appetite, nausea, and diarrhea. I'm absolutely certain it's not gluten related because the DH rash on my back has been steadily disappearing as I've been more careful with my diet now than I've ever been.

They gave me a CT scan with contrast and an MRI and drew my blood every day. My lymphocytes were low out of range almost every draw, my WBC was slightly elevated in most of the draws, and I have an elevated anion gap and neutrophils. The CT scan only showed mesenteric lymph nodes, which supposedly are normal, otherwise it was fine. The MRI (of my head) was normal.

They gave me an upper endoscopy and lower colonoscopy and the initial results were normal, however the biopsy results will be in tomorrow. Gave a stool sample and it tested negative for CDIFF, using the unreliable toxin assay.

It's been two weeks and I'm still experiencing acute abdominal pain in my upper intestines and I feel both weak and fatigued. They discharged me without actually telling me what was causing it other than suspected IBS, which I'm not buying. I feel nauseated everytime I eat and am feeling horrible. I have almost no appetite anymore, as before I loved to eat.

I really don't know what to do now... this is hurting me bad and I know something is wrong. I just want to be reassured that this isn't lymphoma but I've read quite a bit that it can be difficult to find before it becomes life threatening, but would a CT scan and upper/lower endoscopy be enough to rule it out? Should I ask for a pill camera?

Could this just be food poisoning that I can't shake? I feel horrible and I'm trying to force myself to eat. I feel much more nauseas after eating.

[T.H.]

What other foods are you eating? It's slightly possible that you might have developed another intolerance of some kind. They can cause the symptoms you mention (physical ones), and some of these may be in almost all foods, like corn, which is even in many of our regular salt brands.

A good friend (non-celiac) went to the doctor for two years with symptoms as you describe. They did dozens of tests, checked for tumors, all sorts of diseases, and so on. And it turned out to be lactose intolerance.

Some other ideas might be the bacteria H. pylori, or the parasite Giardia. Also can give these symptoms. Fructose malabsorption is another one, although I don't know how quickly this develops.

[CNV2855]

I have widened my diet but I had to because I was losing weight extremely fast on the GAPS diet. I just haven't felt well in the last few weeks/months.

The only good thing I can say is that the acute pain seems to move around a lot, and if it was cancer I think it'd be stationary although I don't know. I guess I just need to wait for the histology results. They did find one abnormality which he thinks is a pancreatic rest, and that was biopsied too so hopefully I'll have some answers tomorrow.

Thank you for the replies T.H.

Is there any chance of this being SIBO? I was on antibiotics temporarily about four months ago, about the time I started to notice slight tenderness in my abdomen. It's kind of crazy that this could be dozens of different things but they all have the same symptoms.

[sariesue]

I have widened my diet but I had to because I was losing weight extremely fast on the GAPS diet. I just haven't felt well in the last few weeks/months.

The only good thing I can say is that the acute pain seems to move around a lot, and if it was cancer I think it'd be stationary although I don't know. I guess I just need to wait for the histology results. They did find one abnormality which he thinks is a pancreatic rest, and that was biopsied too so we'll see.

Thank you for the replies T.H., I'm just so lost right now...

Is there any chance of this being SIBO? I was on antibiotics temporarily about four months ago, about the time all of this started.

Not to be the party pooper, but cancer doesn't always hurt. My grandfather was diagnosed with stage 3 metastasised lymphoma in May and his only symptom was an enlarged lymph node in his neck he was in no pain.

Regardless, good luck.

[Skylark]

I had to look at your other posts. You had steroid-responsive RCD, right? I really see why you're worried about EATL because you do have many of the symptoms. Remember that EATL is very rare, and doesn't tend to show up in people as young as you are.

I'd encourage you to aggressively read about how EATL is diagnosed and make sure you're getting the right tests. The upper GI biopsy is going to be very valuable and you need to make sure they read it right and do the necessary histology. You mention being in an area where there aren't a lot of celiac experts so you're going to have to become the expert. Hopefully your biopsy will come back negative and you'll put the EATL worries behind you.

I don't know where SIBO might fit in. Agreed it has the same symptoms. There is hydrogen breath testing that you should probably have done. Did they set up a culture for it when your EGD was done? I would think GAPS would help SIBO but I don't know for sure.

[heidi g.]

My Grandmother had lymphoma cancer and her belly was full of liquids. My friend Brian's dad was just diagnosed and had fluids in his pancreas i believe. Maybe it's possible the antibiotic disrupted your progress?? That's what lead to my trigger of gluten intolerance!

[CNV2855]

I had to look at your other posts. You had steroid-responsive RCD, right? I really see why you're worried about EATL because you do have many of the symptoms. Remember that EATL is very rare, and doesn't tend to show up in people as young as you are.

I'd encourage you to aggressively read about how EATL is diagnosed and make sure you're getting the right tests. The upper GI biopsy is going to be very valuable and you need to make sure they read it right and do the necessary histology. You mention being in an area where there aren't a lot of celiac experts so you're going to have to become the expert. Hopefully your biopsy will come back negative and you'll put the EATL worries behind you.

I don't know where SIBO might fit in. Agreed it has the same symptoms. There is hydrogen breath testing that you should probably have done. Did they set up a culture for it when your EGD was done? I would think GAPS would help SIBO but I don't know for sure.

The gastroenterologist I spoke to seemed very knowledgable and I asked about HBT for SIBO and he said that they no longer do the test because of a shortage in the reagents required for it... but that he'd definitely trial me with the antibiotics after the results of the biopsy come back.

I probably don't have anything to worry about and I'm probably overreacting, the pain could even be due to the sores from the biopsy... he said he took a LOT of samples. The loss of appetite is what was scaring me the most, I've never had to force myself to eat before other than when I was sick, sick.

[CNV2855]

The gastroenterologist I spoke to seemed very knowledgable and I asked about HBT for SIBO and he said that they no longer do the test because of a shortage in the reagents required for it... but that he'd definitely trial me with the antibiotics after the results of the biopsy come back.

I probably don't have anything to worry about and I'm probably overreacting, the pain could even be due to the sores from the biopsy... he said he took a LOT of samples. The loss of appetite is what was scaring me the most, I've never had to force myself to eat before other than when I was sick, sick.

My biopsy results were "completely normal". I have been gluten free for four years and incredibly strict in the last few months, but I'd have expected at least partial damage.

I have extremely adverse reactions when I get glutened, very bad GI problems, and a DH rash on my back that flares... but I can't believe everything is normal. I wasn't expecting that at all. This means that my problems fall more into the rheumatological category (Sjogren's, etc.) which I'm seronegative with. I have so many symptoms but every test always comes back the same.

I've had "suspected cytoskeletal antibodies", low testosterone, elevated liver AST/ALT (normalized gluten free), and some very bad rheumatological symptoms that seem like they are primary Sjogren's. I really don't know what to say. Maybe I need to get a proper lyme test done. I have some pretty painful symptoms but when I get glutened, it's like being hit by a truck and all my symptoms increase by about 300%.

[Skylark]

My biopsy results were "completely normal". I have been gluten free for four years and incredibly strict in the last few months, but I'd have expected at least partial damage.

I have extremely adverse reactions when I get glutened, very bad GI problems, and a DH rash on my back that flares... but I can't believe everything is normal. I wasn't expecting that at all. This means that my problems fall more into the rheumatological category (Sjogren's, etc.) which I'm seronegative with. I have so many symptoms but every test always comes back the same.

I've had "suspected cytoskeletal antibodies", low testosterone, elevated liver AST/ALT (normalized gluten free), and some very bad rheumatological symptoms that seem like they are primary Sjogren's. I really don't know what to say. Maybe I need to get a proper lyme test done. I have some pretty painful symptoms but when I get glutened, it's like being hit by a truck and all my symptoms increase by about 300%.

That's great that the biopsy is normal! You can put the EATL worries behind you. Not getting answers is frustrating but EATL would be awful.

Lyme sounds like a sensible thing to look into. Also can you have SIBO with a normal biopsy? I don't think much shows up with SIBO unless the small intestinal bacteria are cultured? I don't know that much about SIBO although I would have thought GAPS would help if you were taking all the probiotics.

[CNV2855]

That's great that the biopsy is normal! You can put the EATL worries behind you. Not getting answers is frustrating but EATL would be awful.

Lyme sounds like a sensible thing to look into. Also can you have SIBO with a normal biopsy? I don't think much shows up with SIBO unless the small intestinal bacteria are cultured? I don't know that much about SIBO although I would have thought GAPS would help if you were taking all the probiotics.

I am not the demographic that usually suffers from autoimmune disease. I was an otherwise healthy 17 year old one day, and very, very sick the next... almost completely out of the blue. I'm still fairly healthy considering what I've been through, but you don't see many young males get hit with autoimmunity like that. I have all of the symptoms of primary sjogrens but never tested positive on any ANA or rheumatoid test other than suspected cytoskeletal antibodies.

I did have a Lyme test done via blood and it came back negative, maybe I should look into having the western blot done or more extensive testing.

And yeah, the biopsy results are definitely a relief. At the very least I know that I'm doing good with my diet

[CNV2855]

I am not the demographic that usually suffers from autoimmune disease. I was an otherwise healthy 17 year old one day, and very, very sick the next... almost completely out of the blue. I'm still fairly healthy considering what I've been through, but you don't see many young males get hit with autoimmunity like that. I have all of the symptoms of primary sjogrens but never tested positive on any ANA or rheumatoid test other than suspected cytoskeletal antibodies.

I did have a Lyme test done via blood and it came back negative, maybe I should look into having the western blot done or more extensive testing.

And yeah, the biopsy results are definitely a relief. At the very least I know that I'm doing good with my diet

Ok the biopsy results were not completely normal. I don't know what any of it means because there isn't a plain english explanation but hopefully one of you guys can help me decipher this.

A. The duodenal biopsies consist of small bowel mucosa having overall preservation of normal villous architecture. No villous blunting, villous atrophy, increased inflammation, increased intraepithelial lymphocytes, other features of celiac disease, parasite, granuloma, viral inclusion, lymphangiecstasia, Whipple's disease, dysplasia, or malignancy is identified.

B. The biopsies of the antral diverticulum consist of antral mucosa having foveolar and fibrovascular hyperplasia, histologic features typically seen in reactive gastropathy. One of the biopsies has a benign lymphoid aggregate with suggestion of early germinal center formation (almost a lymphoid follicle). There are a few chronic inflammatory cells very focally elsewhere in the lamina propria, but most of the mucosa is not inflamed.

One of the biopsies has a few adjacent smal crypts with intestinal metaplasia and associated reactive epithelial changes.

No helicobacter pylori are identified on H and E stained sections. Because of the aboved described lymphoid aggregate, an immunohistochemical stain for H. pylori was performed and is also negative.

No pancreatic rest, activity (neutrophilic infiltration of glands), dysplasia, or malignancy is seen.

C. The random antral biopsies have focal mild foveolar and fibrovasular hyplerasia, significantly milder than seen in the antral diverticulum biopsies. There are focal mild reactive epithelial changes. No H. Pylori, increased inflammation, intestinal metasplaia, dysplasia, or maglignancy is identified.

So the question is... what does this all mean? Should I be worried about the lymphoid aggregates at all, and what is vascular hyperplasia from?

[Skylark]

Well, it's kinda over my head. No malignancies or anything horrible, which is good. Having an antral diverticulum (a pocket at the bottom of your stomach) is a little unusual. Ask your doctor if that could be causing pain?

He mentions reactive gastritis and no H. pylori (a common cause). Your stomach is a little inflamed. The small intestine looks good. We can look up reactive gastritis.

Open Original Shared Link

Open Original Shared Link mentions autoimmunity, allergy, NSAIDS, or bile reflux as possible causes. I also found autoimmunity mentioned when I searched lymphoid aggregates on Google.

Maybe reading those will give you some ideas to talk about with your GI doctor.

[CNV2855]

Well, it's kinda over my head. No malignancies or anything horrible, which is good. Having an antral diverticulum (a pocket at the bottom of your stomach) is a little unusual. Ask your doctor if that could be causing pain?

He mentions reactive gastritis and no H. pylori (a common cause). Your stomach is a little inflamed. The small intestine looks good. We can look up reactive gastritis.

Open Original Shared Link

Open Original Shared Link mentions autoimmunity, allergy, NSAIDS, or bile reflux as possible causes. I also found autoimmunity mentioned when I searched lymphoid aggregates on Google.

Maybe reading those will give you some ideas to talk about with your GI doctor.

I'm almost 120% positive that I have sero-negative primary sjogren's syndrome so that could cause the inflammation. I feel so much better on prednisone but I can't take it long-term...

[Skylark]

I'm almost 120% positive that I have sero-negative primary sjogren's syndrome so that could cause the inflammation. I feel so much better on prednisone but I can't take it long-term...

Damn. I know your frustration because I have Hashimoto's and don't know what to do. The thyroid inflammation leaves me feeling tired and out-of-it all the time. Nothing like what you're going through but I do keep getting episodes of serious depression. I seem to be on enough thyroid so I'm trying GAPS, but that isn't working four you.