Ibs, Gluten Intolerance Or Something Else?

[The Horticulturalist]

Hello all,

This is my first post here, though I have been reading a lot here for the last few weeks. I hope I am posting in the correct forum, if not maybe one of the moderators can move it.

Anyway, I wonder if I might give a brief rundown of my symptoms/ history so far and see if anyone can shed any light on my symptoms. I have no prior history of allergies or known food intolerance.

So, back in March I had eaten out with my husband, steak and baked potatoes. About 2 hours later I had diarrhea which turned completely watery very quickly. I felt flushed, hot and shaky but I did not have a fever, nor did I have any abdominal pain or cramping. After taking 2 immodium initially and then 1 more about 1/2 hour later, the diarrhea cleared up within about an hour of taking the medication. I went to bed after that and more or less went back to normal the next day though I was more tired than usual. I had a very similar episode about 10 weeks later at the end of May.

About 9 weeks ago It happened again, only this time I felt very unwell - wiped out, no energy, lack of appetite, tearful - for about 2 - 3 days afterwards and not fully recovered for about a week. Since then it has happened on average about once a week. I have seen an internal medicine doc who tested for parasites, bacteria, celiac and so on, all negative.

I am scheduled for a colonoscopy on Tuesday (oh joy...) with a Gastroenterologist. IBS has been mentioned of course, but I'll wait and see if he sees anything.

I have tested my vitamin D levels via a lab online and they are low (28) and I have also done the stool and gene test thingy for gluten and casein from Enterolab, I am still awaiting these results.

I have been following a strict gluten free diet for the last 3 weeks, I had a bad diarrhea episode about 5 days into it, but since then I have not had any major GI symptoms. I still feel generally cruddy and tired, but no bloating and trapped wind which had been a daily occurrence prior to that.

So here is a list of my typical symptoms when I have a diarrhea episode and in the days following:

* Diarrhea

* No abdominal pain or cramping

* flushed/feeling hot - no fever

* Acute irrational anxiety/tearful while this is happening (I'm not normally anxious)

* Only ever happens in the evening

in the days after:

* Very fatigued, a trip to Walmart would be very difficult for example.

* tearful ( in the evening mostly)

* lack of appetite, but some of that is related to worry about what to eat.

Family history:

I have no diagnosed medical problems and am not overweight.

My father (65)has had hiatus hernia, gallbladder removed, has chronic fatigue. Suffers from gas and bloating and constant GI grumbles.

One of his sisters has had bowel cancer, her adult daughter just been diagnosed with rheumatoid arthritis as has my dads other sister, don't know if that has any bearing on anything.

Thanks for listening, sorry it was so long.

[Dixiebell]

Welcome to the forum! First, please don't let a Dr. diagnose you with IBS. IBS is a symptom of somthing else that is going on. The celiac blood tests are not 100%. Some people can have a false negative. Now, with you being gluten free already, if the GI wants to do an endoscopy it is likely he will not find damage from celiac, but you could get it done and see if he finds anything else that could be causing problems.

You also need to be taking a lot of Vit D. Get your GI to test you for vitamin deficiencies while you are there. If you haven't already heard this before, autoimmune diseases travel in packs. People usually have more than one. So it is very possible one of your family members could have had it or has it.

[mushroom]

Family history:

I have no diagnosed medical problems and am not overweight.

My father (65)has had hiatus hernia, gallbladder removed, has chronic fatigue. Suffers from gas and bloating and constant GI grumbles.

One of his sisters has had bowel cancer, her adult daughter just been diagnosed with rheumatoid arthritis as has my dads other sister, don't know if that has any bearing on anything.

Welcome to the board.

You do have quite a significant family history. Apart from your father's GI problems, gallbladder problems are common amongst our posters, family history of bowel cancer is significant, as is the rheumatoid arthritis. And it's all on the same side of the family.

It sounds like you are in the early stages of celiac, where there are not yet enough antibodies to form a diagnosis. However, there may be some inflammation in your small intestine (or there may not, especially if you have been gluten free for a while). Nevertheless, I think it would be good to ask the gastoenterologist to do an upper endoscopy at the same time as the colonoscopy despite the negative blood work. We see various combinations of results - blood negative, endoscopy negative; blood positive, endoscopy negative; blood negative, endoscopy positive; both positive; both negative. And yet, with all these results, so many people feel bettter (not everyone) when they decide anyway not to eat gluten. So regardless of the outcome of your testing, I would certainly recommend you continue with the gluten free diet and give it a good three-month trial.

Do let us know how your testing goes, and what your Enterolab results show.

[The Horticulturalist]

Welcome to the board.

You do have quite a significant family history. Apart from your father's GI problems, gallbladder problems are common amongst our posters, family history of bowel cancer is significant, as is the rheumatoid arthritis. And it's all on the same side of the family.

It sounds like you are in the early stages of celiac, where there are not yet enough antibodies to form a diagnosis. However, there may be some inflammation in your small intestine (or there may not, especially if you have been gluten free for a while). Nevertheless, I think it would be good to ask the gastoenterologist to do an upper endoscopy at the same time as the colonoscopy despite the negative blood work. We see various combinations of results - blood negative, endoscopy negative; blood positive, endoscopy negative; blood negative, endoscopy positive; both positive; both negative. And yet, with all these results, so many people feel bettter (not everyone) when they decide anyway not to eat gluten. So regardless of the outcome of your testing, I would certainly recommend you continue with the gluten free diet and give it a good three-month trial.

Do let us know how your testing goes, and what your Enterolab results show.

Thank you both for your reply, I will let you know what, if anything, shows up on Tuesday. The Enterolab stuff was sent away about 2 weeks ago so hopefully not long for those results.

I agree on the IBS, it feels a bit like I'm being fobbed off. If he insists on the IBS label I think I'll have to find another GI doctor.

In the meantime I'm using the Vitamin D deficiency as a good excuse to read books in the sun

[The Horticulturalist]

So I had the colonoscopy, the doctor said he didn't see anything but he took a biopsy anyway. My friend was with me when the doctor spoke with me afterwards, apparently he mentioned the dreaded IBS as the likely cause,(I don't remember anything he said)

So, I'm not really sure what to do next. The doctor was very nice and all that, but I'm not happy with the IBS label at all. I guess I'll wait and see if the biopsy is clear.