Waiting on Results/ Still Sick

[mnburis]

Here is My story;

 

I'm a 39 year old woman. About 2 years ago I started having daily severe stomach aches and cramping. Then started the diarrhea. I'm not talking a little. I'm talking about 12 times a day. I'm feeling extreme fatigue, brain fog, balance is off, memory is bad, hair is falling out. I go to a GI last year and he orders a colonoscopy and endoscopy plus a stool test. Stool test is all clear except for positive lactoferrin. He says that means nothing and it is nothing. He finds 1 polyp on the colonoscopy ( its precancerous) and numerous ulcers on the endoscopy. He takes NO biopsies, chalks it up to me VERY occasional use of ibuprofin. He basically had his mind set on IBS and there was nothing going to change it. 

I tried Viberzie, no difference. I tried Bentyl, no change. I tried Immodium, the diarrhea would come back as soon as I stopped taking it. So I just started to deal. I stopped eating much because whats the point? I would eat and then 30 minutes later the food was in the toilet like I hadnt even eaten, just thrown it in there. But I started GAINING weight. Went back to my PCP last week. She orders all kinds of blood work. Including a celiac test. So far I know that my vitamin D is super super low. My vitamin B12 is almost non existant. So my body isnt absorbing nutrients, but its storing what it can hang on to as fat. I'm starving all the time. My band % (in my blood work, I'm confused) is really high indicating something is wrong somewhere. The celiac test isnt back yet so I just dont know. 

Something is wrong with my gut. I know it. Its NOT simply IBS. I tried the diets, I tried cutting out food that could irritate me. Nothing mattered. I dont know if its Celiac but I know something is wrong. And I'm tired of being thrown away with an IBS label. I just want answers. 

 

Thanks for letting me vent

 

I

 

[Jmg]

Hello and welcome

Its good that your doctor has ordered the celiac test, not sure why your GI didn't, as you say perhaps he was presupposing IBS...

You mention cutting out food, you haven't tried cutting gluten yet have you? That can throw the results of any testing. You are best to stay on it for now at least, once testing is done it would be worth trying the gluten-free diet regardless of results.

Dont lose heart, be persistent, get those answers and best of luck!

[mnburis]

41 minutes ago, Jmg said:

Hello and welcome

Its good that your doctor has ordered the celiac test, not sure why your GI didn't, as you say perhaps he was presupposing IBS...

You mention cutting out food, you haven't tried cutting gluten yet have you? That can throw the results of any testing. You are best to stay on it for now at least, once testing is done it would be worth trying the gluten-free diet regardless of results.

Dont lose heart, be persistent, get those answers and best of luck!

No I havent cut out any gluten. I cut out stuff I knew hurt me. Like watermelon. Which sucks because I LOVE watermelon. 

There are days that I cant even get words out. I can think a sentence and just cant get it out. I constantly stumble and feel drunk in my head. I'm hoping these daily shots of B12 I'm getting will start to help some. 

Yesterday I put the milk in the cabinet

 

 

[Jmg]

1 minute ago, mnburis said:

No I havent cut out any gluten. I cut out stuff I knew hurt me. Like watermelon. Which sucks because I LOVE watermelon. 

There are days that I cant even get words out. I can think a sentence and just cant get it out. I constantly stumble and feel drunk in my head. I'm hoping these daily shots of B12 I'm getting will start to help some. 

Yesterday I put the milk in the cabinet

 

 

OK, that's good news, not the milk in the cabinet, that you've not cut gluten! Stick with it and wait for the test results. If they're positive then it will be another endoscopy, but this time with the biopsies.

If negative, don't despair. Your GP may still refer you but if not you can try the gluten free diet for yourself. Keep a food diary and follow all the instructions here in the newbie thread and establish for yourself if it's the problem. If it is, don't stress overmuch about a diagnosis. I tested negative but gluten is a big problem for me and many others. The good news is the diet worked for me and it may still for you.

In the meantime, try and eat as well as possible and take a good quality B vitamin and multi vitamin to try and boost those levels.

Good luck!

[mnburis]

1 minute ago, Jmg said:

OK, that's good news, not the milk in the cabinet, that you've not cut gluten! Stick with it and wait for the test results. If they're positive then it will be another endoscopy, but this time with the biopsies.

If negative, don't despair. Your GP may still refer you but if not you can try the gluten free diet for yourself. Keep a food diary and follow all the instructions here in the newbie thread and establish for yourself if it's the problem. If it is, don't stress overmuch about a diagnosis. I tested negative but gluten is a big problem for me and many others. The good news is the diet worked for me and it may still for you.

In the meantime, try and eat as well as possible and take a good quality B vitamin and multi vitamin to try and boost those levels.

Good luck!

I do have a referral to another GI at one of the top hospitals in North Carolina. I'm just waiting on the call to schedule an appointment. 

[Jmg]

Hopefully they will be able to see you soon. Ignore my last comment about a b vitamin, if your getting shots it shouldn't be required obviously... I didn't understand your statement about your blood band %? Maybe if you can  expand on that one of our more knowledgable users can help?

[mnburis]

[mnburis]

I have more ill post if it'll let me 

[Jmg]

10 minutes ago, mnburis said:

I have more ill post if it'll let me 

From a quick google I think the band cell result is indicative of infection or inflammation, which supports your feeling that something is amiss. Hopefully the celiac result will supply more info. 

 

[mnburis]

[mnburis]

[Victoria1234]

We must live pretty close to each other. Which hospital is your gi at? 

I had a sort of diagnosis by having my constant dh rash diagnosed as dh, but I never had the blood test or endo. Just went gluten-free and it started working immediately. I had the opposite gut issue! And chronic pain. It was awful. I'm so sorry you are going thru this but it sounds like you are on the right path! 

[mnburis]

Just now, Victoria1234 said:

We must live pretty close to each other. Which hospital is your gi at? 

I had a sort of diagnosis by having my constant dh rash diagnosed as dh, but I never had the blood test or endo. Just went gluten-free and it started working immediately. I had the opposite gut issue! And chronic pain. It was awful. I'm so sorry you are going thru this but it sounds like you are on the right path! 

I got a referral to Baptist Hospital. I'm really hoping this GI is better than my last one. I just want someone to listen to me and help me. 

[Victoria1234]

2 minutes ago, mnburis said:

I got a referral to Baptist Hospital. I'm really hoping this GI is better than my last one. I just want someone to listen to me and help me. 

Sounds like a good hospital. Good luck!

[plumbago]

The sluggishness, hair loss, and weight gain made me think of hypothyroidism, but then the diarrhea throws me  - unless the two things are unrelated. Coincidental but unrelated.

I looked up positive lactoferrin test on labsonline:
Lactoferrin is a stool (fecal) test that is used to detect inflammation in the intestines. Intestinal inflammation is associated with, for example, some bacterial infections and, in people with inflammatory bowel disease (IBD), it is associated with disease activity and severity. The test may be ordered to distinguish between IBD and non-inflammatory disorders and to monitor IBD disease activity.

Also the bands refers, if I'm not mistaken, to neutrofils and as others have said, usually this means that there is an infection or inflammation present and the bone marrow is producing more WBCs and releasing them into the blood before they are fully mature.

I'm sure you would have mentioned medications you were taking if you or a medical provider thought they may be affecting you negatively.

Let us know if there is anything else we can do. You have a lot of people here ready to help.

Plumbago

 

ETA: I see the doctor chalked something up to your occasional use of ibuprofen. Sorry, I could not figure that one out, and how it had much to do with your symptoms.

ETA 2: The only other condition I would look into is - and not to suggest you have it - Cushing syndrome, which is excessive adrenocorticol activity. In this condition, one may have thin extremities and central obesity, bruise easily, some people get what is known as a buffalo hump, wounds can be slow to heal, and one can become hypertensive. But again, just a suggestion because your glucose is fine, and you have hair loss as opposed to hirsutism (another sign of Cushing).

 

[mnburis]

45 minutes ago, plumbago said:

The sluggishness, hair loss, and weight gain made me think of hypothyroidism, but then the diarrhea throws me  - unless the two things are unrelated. Coincidental but unrelated.

I looked up positive lactoferrin test on labsonline:
Lactoferrin is a stool (fecal) test that is used to detect inflammation in the intestines. Intestinal inflammation is associated with, for example, some bacterial infections and, in people with inflammatory bowel disease (IBD), it is associated with disease activity and severity. The test may be ordered to distinguish between IBD and non-inflammatory disorders and to monitor IBD disease activity.

Also the bands refers, if I'm not mistaken, to neutrofils and as others have said, usually this means that there is an infection or inflammation present and the bone marrow is producing more WBCs and releasing them into the blood before they are fully mature.

I'm sure you would have mentioned medications you were taking if you or a medical provider thought they may be affecting you negatively.

Let us know if there is anything else we can do. You have a lot of people here ready to help.

Plumbago

 

ETA: I see the doctor chalked something up to your occasional use of ibuprofen. Sorry, I could not figure that one out, and how it had much to do with your symptoms.

ETA 2: The only other condition I would look into is - and not to suggest you have it - Cushing syndrome, which is excessive adrenocorticol activity. In this condition, one may have thin extremities and central obesity, bruise easily, some people get what is known as a buffalo hump, wounds can be slow to heal, and one can become hypertensive. But again, just a suggestion because your glucose is fine, and you have hair loss as opposed to hirsutism (another sign of Cushing).

 

1. My thyroid was tested and is in the normal range. 

 

2. I'm not taking any medication so nothing to interfere with test results. 

3.  My endoscopy showed multiple ulcers and that's what the GI chalked up to my very rare ibuprofen use. I use ibuprofen maybe once a month if that. 

4.  I'll check into anything to figure out what's wrong  

 

I got my Celiac test back today. It showed no evidence of Celiac disease. So I'm back at the drawing board. I did another stool test today also. 

 

[Feeneyja]

Another thing to investigate is SIBO (small intestine bacterial overgrowth). It can cause all of these symptoms. There is a breath test to check for it which any GI doctor should know about, although you have a better chance of knowledge at a teaching hospital.  There's a lot of new research in this area.

Here is more information:

Open Original Shared Link

The current thought is that many IBS cases are actually SIBO. The treatment requires antibiotics (standard or herbal, both work) and dietary adjustments to reduce fermentable carbs so as not to feed the bacteria.  If it is very advanced, it can take multiple courses of treatment and for some people it seems to be chronic. There is always an underlying cause. Food sensitivities and malfunctioning migrating motor complex are the two big ones. Also structural problems with the intestines that slow motility is another.  There is a high prevelance of SIBO in gluten intolerance. My theory is that it is the neuro toxicity of gluten in susceptible individuals that slows gut transit and sets up a perfect condition for bacterial overgrowth.  But I'm not a doctor  I just have a daughter with chronic SIBO and gluten intolerance that manifests itself in neurological symptoms.  

You might want to look into it.  The above website is a treasure trove of information. 

[Feeneyja]

Also, have you been tested for H. Pylori infection?  I think I have seen that many ulcers can be attributed to that. It is also diagnosed with a breath test. 

Hang in there. Many people have been in your shoes.  I wish it were easier.  

[mnburis]

26 minutes ago, Feeneyja said:

Also, have you been tested for H. Pylori infection?  I think I have seen that many ulcers can be attributed to that. It is also diagnosed with a breath test. 

Hang in there. Many people have been in your shoes.  I wish it were easier.  

I have had NO breath tests done. Just  blood, stool, colonoscopy and endoscopy. I'm sorry. I'm feeling so discouraged. I just know its going to be put down to IBS. And I personally feel  that IBS is a throw away diagnosis when no one wants to investigate further. 

[knitty kitty]

mnburis,

I'm concerned about your symptoms, especially the diarrhea being so frequent.  I experienced pellagra after prolonged diarrhea.   The symptoms are diarrhea, dermatitis, dementia and death.  Pellagra is a deficiency of niacin (B 3).  With your vitamin D and B 12 already diagnosed as low, you're very likely to be low in all the other vitamins and minerals as well.  The eight B vitamins are water soluble and need to be replenished every day.  The B vitamins all work together.  All should be supplemented if one is low.  Large doses of B 12 by itself can cause folate deficiency anemia if you're low in folate (B 9) already.  Ask your doctor about other vitamin deficiencies.  The easy ones to test for are D and B12.  Tell your doctor how severe your diarrhea is.  Ask about pellagra.  Here's some more information.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

Open Original Shared Link

I really hope this helps.  

[plumbago]

5 hours ago, knitty kitty said:

Large doses of B 12 by itself can cause folate deficiency anemia if you're low in folate (B 9) already.

I had not heard that. What I had heard is that folic acid supplementation can mask B12 deficiency.

Feenejya suggested getting tested for H Pylori, not a bad idea.

What you're going through sounds awful, I'm so sorry you're going through this. Please stay in touch, and do take care because chronic diarrhea can present some complications of its own, as you know. Try to replenish fluids and electrolytes.

[knitty kitty]

"Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure that they are normal. This is because folic acid treatment can sometimes improve your symptoms so much that is masks an underlying vitamin B12 deficiency. If your B12 deficiency is not detected and treated, it could affect your nervous system."

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And then there's this....

"The second reason to supplement both vitamins is that having too much folate can mask the symptoms of B12 deficiency, and vice versa. This masking effect can severely delay a diagnosis of either B12 or folate deficiency, with potentially serious consequences."

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 Can someone else double check?  

I think B12 and folate are dependent on each other to work properly.  Apologies for my mistakes.  

Adding one more article...

Open Original Shared Link

Vitamin B12-folate interrelationships.

[plumbago]

Folate activates B12 by giving up its methyl group.