[lexiathedragongirl]

Glad to see the boards back up I haven't been around for a long time, but need some advice as my stomach probs are starting to worry me. I am seeing my doc but sort've "in between" visits at the moment.

To make a short story long I was dxd IBS back when I was 18 or so (now 36) with predominantly lower right side pain and C. The pain would hit for maybe 3 days, then go. Well, it started back again about 4 weeks ago, and this time didn't go. It is lower right side, spreads across lower pelvic like menstrual ache, or sharp grab in the hip, and also spreads up into my back on the right. Yesterday I also had some pain in the left, and passed blood. (this has happened before).

I had an U/S last week that reported ovaries etc fine, and kidneys elongated but within normal parenchyma. No stones. About 2 years ago I had scopes both ways and a biopsy done which said very little (no coeliac, including the blood test) and a barium x-ray the same week showed nothing. My own experimentation says I am gluten intolerant so I stick to a low gluten diet (not totally gluten free).

So, could I have developed coeliac in the 2 years since that scope, (i've read where it can spontaneously emerge), what ideas do others have? the only other clue I have were enlarged blood vessels on the right reproductive organs. Just remembered that.

I am waiting to go back for another visit, but thought I'd trawl for any input, ideas etc. Many thanks.

[jccgf]

Hi!

Sorry to hear you are having worsening problems.

Yes, it is possible that you might test positive today on tests you 'passed' a year or two ago.

It is also possible you could pass the tests again, but would still benefit from a strict gluten free diet. I know it can be tough to commit when there are no tests to back it up but sometimes the pay off is great.

I'd ask the doctor to repeat the blood work for celiac disease, just in case something shows up. If the doctor can't find any other problems, I'd suggest you bite the bullet and commit to a strict gf diet and see if it helps. You might want to consider other foods could be problematic for you, too. Cow's milk, soy, corn, yeast, eggs are commonly problems.

Here is the data I like to offer to the question of whether you can develop celiac later, after a negative test:

Among 11 relatives, at the time of the first screening, 6 already had a positive serology and histology for CD, while 5 became positive only after a period of 2 to 5 y of negative testing.
CD can manifest itself after years of negative serological testing

Also: Follow-Up to the Catassi Study -- Scandinavia
Colin, et al, published a follow-up study to the Catassi (Coeliac Disease in the Year 2000:Exploring the Iceberg - University of Ancona, Italy) in the Scandinavian Journal of Gastroenterology 28(7):595-8, 1993, which demonstrated that approximately one third of the patients from the Catassi Study who had raised antibodies but no villous atrophy, did have villous atrophy when tested two years later. These results raise the number of diagnosed celiacs from the Catassi, et al study to over 1 in 200.

You might also like to read Dr. Fines essay:
"Early Diagnosis Of Gluten Sensitivity: Before the Villi Are Gone" by Kenneth Fine, MD

Cara

[KimS]

Originally Posted by lexiathedragongirl

Yesterday I also had some pain in the left, and passed blood. (this has happened before).

I find this statement rather alarming. I think you need someone to get down to the bottom of that!

This is not to say that I don't think you wouldn't benefit from the diet... it certainly won't hurt to try it out but you really need to be seen if your are bleeding.

Those are my thoughts... just based on instinct... and I agree with everything Cara said, of course.

[annelb]

Yesterday I also had some pain in the left, and passed blood. (this has happened before).

I agree with Kim, this needs to be checked out but I am not sure if you mean this blood was in your urine, stool or vaginal?

I don't really have anything to add to Cara's post. IMHO a gluten reduced diet just does not let a body heal if one is sensitive. Exposure to gluten can cause an autoimmune reaction that lasts for weeks even if it seems as though you get over it in days.

Hope you are feeling better.
Anne

[pabb]

just to confuse even more,lol....i can remember reading,(were, i dont remember) that you can have a cycstic ovary that doesnt show up on imaging studies....previously, did this pain come regularly? in the middle of your menstrual cycle? and what do they say about the "enlarged blood vessels" which i presume are around your R ovary....perhaps they are "leaking". blood where it doesnt belong can be very irritating......good luck

[lexiathedragongirl]

Thanks so much guys. I should have clarified it was blood with bowel motion - I'm sort've on the verge of ringing up again, it just never seems to be a good time in your life to have something like this intrude (I have my MIL coming to stay and it is school hols at the moment *sigh* )

I wondered with the enlarged vessels as a few years back I saw a show about a woman who'd had lower right side pain and ended up having emergency appendectomy - but turned out there was nothing wrong other than enlarged blood vessels around the appendix. just wondering if there could be any correlation as this pain has been almost classic appendix off and on over the years, yet nothing comes of it.

And to go gluten free....I need to bite that bullet, just making that final committment I will try and be a good girl, on the whole I cut it out, but lapse - perhaps my lapses have caught up with me. I'll ask for that blood test again.

Thanks again guys

[NancyM]

Definitely get to a specialist with that bleeding. It could be colitis or Crohns or a tumour in the intestines. You need to get that checked into.

[diamondheart]

Originally Posted by lexiathedragongirl

To make a short story long I was dxd IBS back when I was 18 or so (now 36) with predominantly lower right side pain and C.

A few random thoughts here: First, what does C stand for? Crohn's disease or colitis? If the pain is lower right abdomen, that suggests problems around the appendix or ileum and ascending colon. The ileum is the first part of the large intestines where the small intestines dumps in. I seem to remember some GI type problems associated with this part of the digestive system, but it's escaping me now.

I'm trying to figure out the cause of my digestive problems as well. I've been going through all the food intolerance type tests and am trying to run through all the pathogen type tests. I'm hoping I can avoid being scoped. I think it's good to make a list of what you might not have, then go for the testing of those things you haven't ruled out yet. My problems seem to be a little further in the colon - transverse and decending colon. If you are wondering about your reaction to gluten, I think it's good to get tested before you are gluten free, then try gluten free regardless of what the tests tell you. Have you considered testing through Enterolab as well?

Claire

[canoe]

I definitely agree with Kim's comments that you need to have this checked out. Blood when passing stool needs follow up. Also right- sided abdominal pain for 4 weeks should be investigated.

Be well.

Marilyn

[Nathan1097]

Hi. Will post more once the kids are in bed but I have similar issues lately! Nobody seems to be able to diagnose. Back soon!