You Have Ibs, That's It (Please Offer Your Opinion)

[Ginger7]

Trying to think of how to summarize everything...38 yo female, sensitive stomach for as long as I can remember, anti-belts (never wore belts because they hurt my stomach or even tuck my shirt in), have bouts of bad D followed by periods of relative normalcy. Always chalked it up to anxiety, food poisoning, blah blah blah. Rewind 3 years ago, during my second pregnancy, around 20-25 weeks I thought I was going into labor. Mind you I had already been through one childbirth so I knew the feeling/pain. It wasn't labor, it was intense cramping following by crapping my brains out with the chills and feeling totally exhausted afterwards. Healthy daughter born, lost 60 pounds (maybe 20 pounds worth of water weight) in 3 months without dieting, exercise. Again, periods of normalcy followed by episodes (anywhere from a few days to weeks) of bad D (with labor like cramps). Get pregnant again, have chronic D most of pregnancy, had to get IV fluids for dehydration, didn't gain weight last 8 weeks of pregnancy. Thankfully, baby born healthy but on the small side.

My symptoms include (are you ready?): depression, irritability, severe stomach cramping, pins and needles in my arms and legs (like falling asleep) during attach, foul smelling gas, foul smelling stool, steatorrhea, weight loss, panic attachs, diarrhea, stomach makes loud noises after eating and during attacks), large volume stools (like above water level in the toilet eww), bloating, reflux, fatigue, always tired, afraid to go out or to work because I might have an attack in the middle of something. Frequency of stool is anywhere from 0 - 10+ per day, usually loose, mixed or large volume. Was averaging 2-3 attacks per week. Attack defined as either explosive D or large volume soft stool (like I just lost a few pounds type). Often accompanied with pain below rib cage and I can feel waves of pain sometimes during attach when having BM. Sometimes so painful that I almost pass out in the bathroom.

That was 4 months ago. Have lost 40 pounds in 3 months without dieting or trying. Was seeing GI specialist during most recent pregnancy (first time seeing GI doc). He suggested IBS but wanted to wait to do any scopes until after pregnancy. In June 2001, he did a few blood tests with results below:

Tissue transglutaminase antibody, IgA <3 (Negative <5)

Immunoglobulin A 87 (81-463mg/dl)

Gliadin antibody (IGA) <3 (Negative <11)

Question: Is 87 considered partially deficient or perfectly normal and therefore should not throw off any other celiac disease testing?

Late December 2011, endoscopy and colonoscopy found no inflammation (not microscopic either), no evidence of celiac, one mucosal polyp in rectum. Dr. annoyed with me that I wanted him to call me to discuss results. You have IBS, that's it, take Imodium everyday, as much as you want basically. Come back and see me in 4-6 weeks, which is mid January 2012. I asked him if we could have missed any inflammation/celiac and he said no.

My primary doctor was more concerned and when I saw her, she ordered a CT scan with barium and more bloodwork, results below.

CT scan of abdomen and pelvis abnormal due to suspected giant hepatic hemangioma, awaiting results of nuclear imaging study to confirm hemangioma. Hopefully the mass is just a hemangioma (which may have to be removed) but at least it is not cancer. With CT scan results, GI doc still insists I have IBS and thinks this liver mass is unrelated (I'm not sure if this is causing symptoms or not, giant ones can but many people have them and are asymptomatic).

Bloodwork results from last week (just highlights of the abnormal or more interesting ones)

B12 463 (200-1100)

Vit D 26 (30-100)

AST 34 (10-30)

ALT 29 (6-40)

ESR 6

RA 8 (<14)

Platlet count 215 (140-400)

Hematocrit 34.6 (35-45%)

Hemoglobin 11.9 (11.7-15.5)

RBC 3.89 (3.80-5.10)

WBC 2.9 (3.8-10.8)

Stool tests negative for C diff, H pylori, awaiting stool fat test

In my opinion, the blood doesn't lie and this is not consistent with IBS. It is more consistent with malabsorption due to a variety of reasons, Celiac or other inflammatory bowel disease. Does anyone agree?

Scheduled to get Prometheus CELIAC PLUS this week. New Year's Eve, I decided to go gluten free and I already feel 50% better in just a matter of a few days (no attacks, fingers crossed). I have read that a few days or even a week of gluten free should not throw off my Prometheus test significantly - agree? I am scared to go back on gluten for the test because of what might happen, what has been happening all my life and even more worse in the last 3 years. Obviously, there is some cause for concern with my blood counts, WBC specifically. These will be retested in a few weeks and if still low, off to a hematologist.

My primary doc agreed to give me weekly B12 injections for January, then 2 in February, then retest. I have to pay for it since by US guidelines, I am not technically deficient. I don't agree with that nor do I like the IBS diagnosis.

Any thoughts are welcome. Thank you for reading, if you made it all the way through. No one seems to understand me except for others with similar symptom complaints. Many people keep telling me it is all in my head.

[Skylark]

Hi and welcome. IBS is a symptomatic diagnosis. We like to say it stands for "I be stumped". You sure sound like you could be celiac to me! You have a truckload of symptoms including the so-called IBS, weight loss, liver enzymes, low vitamin D and I bet your lowish hematocrit is from borderline anemia, not really good hydration. Your total IgA of 87 is low enough to throw off the celiac panel even if you aren't technically deficient. The lower your total IgA, the less sensitive the celiac panel is, because there just isn't much IgA to test.

I'm glad you're getting more testing. Being gluten-free for just a few days shouldn't change the results of your Prometheus panel. I hope it gives you better answers.

Even if your testing comes back iffy, give the diet a good strict try. Celiac testing is hard to get positive results, and non-celiac gluten intolerance can also make you very sick. Good luck!

[nora-n]

hm weird, when I googled celiac hemangioma there were other people with this combo too

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[pricklypear1971]

You need an iron/ferritin panel too. Get them all, not just "iron".

In the end, the proof is in how you feel off gluten.

I'd get a copy of the endoscopy report and see what it says. Just don't take the GI's word for it, and it's just a good idea to have a copy.

[Ginger7]

Well some good news today, my nuclear scan confirms the hemangioma which is nearly 100% accurate, meaning it is highly unlikely to be malignancy! Yeah me! Now, I will collect my records and probably go to John's Hopkins Liver Center for a second opinion and to determine whether I need surgery to have it removed, given the size.

Thanks for the replies! I had the Prometheus blood panel today so look forward to results next week.

[dilettantesteph]

Your bathroom symptoms sound a lot like mine. False negative are possible. Be sure to try the diet anyway once the testing is complete, even if negative.

It was such a relief to find how to stop those symptoms.