IgA deficiency and IBS-D

Im 53 female. 6 years ago, I developed IBS-D which seems to be after a course of taking the antibiotic Flagyl due to Giardasis. Bloodwork sent to a specific lab in Calif came back as having IBS, The parasite did not come back as my stools are checked yearly. The pattern is strange because I can go months being perfectly normal and eat everything in the world then there would come one day that I would have an urgency that comes and goes for weeks and I become homebound. Immodium sometimes works- not always. Then Im OK for a span...and just when I get my confidence back to go out and be more active, I get an attack again.   Anyway, the latest bloodwork shows that I am IGA deficient. Can this have something to do with the mucosa of my intestines. Could I be catching a food infection?  Is there a connection?  Thank you in advance for any input.

[patient915]

Welcome to the gastroenterology community!  Bloodwork can't "show" IBS.  Have you talked to your gastroenterologist about this?

[joelcoqui]

Oh yes. Lab Promethius shows it. Looking at lab work now. Ihave seen excellent specialists for over 5 years.

[patient915]

Well then they are scamming you, sorry.  IBS is a diagnosis of exclusion, there is no lab test out there that can show IBS.

[FurballsMom]

This sounds more like Celiac.  Keep in mind that you can test negative with every sort of test out there and still have Celiac.  With Celiac often comes casein intolerance as well.  It's a protein in milk that more often than not cross reacts with the gluten intolerance that people with Celiac have.  It's an auto immune illness.  Though not all Celiacs have diarrhea in the manner you're describing, as many have the opposite issue, going through bouts of chronic diarrhea is a classic symptom of Celiac.  You can also have gluten intolerance without actually having Celiac.

You can also have a case of "Dr. Doubter", as the term I've decided to call a local ER doctor who thinks that just because I still have bowel issues that I don't know what I'm talking about when I tell her I have definite gluten intolerance.  She thinks this because her fancy blood test (the only thing she is willing to verify with by the way) that is only 85% accurate at best is always negative with me.  No one will do the small intestine biopsy for me.  And, I've heard that this can still be negative and a person actually have Celiac.  I'm now down to my only option is to do genetic testing, but I have to pay out of pocket for this test.  If this comes back negative, too, I would be greatly shocked, because I have first degree relatives who are also gluten intolerant and one with actual diagnosed Celiac.  

The funny thing of it is, I do have an outward sign that I have gluten intolerance.  Whether or not it's Celiac is still hard to tell.  However, if I eat enough gluten, I will get the biggest eczema blisters on the heels of my hands you ever saw.  I stopped getting these when I stopped eating gluten.  My PCP can vouch for this.  I keep telling "Dr. Doubter" that I would sign a specific HIPPA paper if she wants to discuss this eczema issue with my PCP who can vouch for the obvious improvement after I stopped eating gluten.  My guess is that "Dr. Doubter" doesn't want to be wrong and wants to keep believing that I'm the crazy one here and on some fad diet.

I say all of this, because you need to understand what an uphill battle it is to even get a diagnosis.  Whoever said that the test showed IBS is wrong, because the moderator of this forum is absolutely 100% correct about how IBS is diagnosed.  "Dr. Doubter" is willing to believe the diagnosis of IBS but still in denial that many with IBS actually have some sort of gluten intolerance, even if it's not Celiac.

What I find maddening about the whole thing is this:  If I say that I react badly to any other food, even if I test negative for a full blown "true" allergy, doctors and other medical personnel are willing to believe me.  But, they can be a stick in the mud when it comes to gluten intolerance and/or Celiac.  Why, is beyond me, when eating a gluten free diet is still totally healthy, and Dr. Doubter admits that it is.  I'm glad Dr. Doubter is not my regular physician, because I would have just cause to fire her as my physician if she were.  She is a great ER doctor and she is nice enough, but this is one area where I feel dismissed and disrespected as both a patient and as a person.

Anyway, you did need to be aware of what kind of an uphill battle you are facing.  I believe you likely have Celiac, but getting to the point of actual diagnosis is not very easy for the majority of people with Celiac.  Most Celiacs face the dismissal and disrespect that I just described.  So, first we deal with being dismissed or brushed aside as being told that all our symptoms are just in our heads, because the tests for anything and everything under the sun are done for the whole GI tract.  Then, when we still have symptoms, we get an umbrella label as having IBS.  And, while IBS is frustrating enough as it is, it is deemed as less serious than the rest of the GI issues that a person could have, so we get told that it's "just IBS".
Yeah, it's only taking over you're life, but it's "just IBS".  Most people who have Celiac that isn't quickly determined with the blood test will get told over and over and over that it's "just IBS".

I can't tell you how many stories I have read that are far more serious than mine.  One lady who had her story published online continued to test negative for Celiac for years and years and years.  Her entire life from childhood onward was spent next to a toilet.  She spent years of every conceivable test for Celiac possible always testing negative.  Finally, after she was about your age, finally, her doctor conceded that even though she tested negative in every way possible, there could only be one conclusion possible.  That conclusion is that she has Celiac.  Though her life has improved considerably since going gluten free, a great deal of permanent damage was done to the digestive tract, so she still has problems.  She is a great deal better than she was when still eating gluten, and she is grateful for that, of course, but so much damage was done to the gut because of still eating gluten all those years from not knowing, to suspecting but not verifying, that she will always have some flare ups with the bowels.  Although, she does finally have more days where she can actually leave the house now.

Now you have a better idea of what you need to know to proceed.  Consider joining the Celiac community.  You will be glad you did.

[joelcoqui]

I have been actively been going to specialists and researching this for years. I have had colonoscopys,endoscopies and all the stool and blood tests in existence. I purposely had them done in different labs to see if they were consistent..and they were. The last testing that was done was Serology and Genetic testing for Celiac and an IBS Diagnostic. These tests are done after all other tests are negative. Its done with genetic testing. Its called an anti endomysial total IGA. It shows serological markers for celiac disease not detected. The same was done with IBS diagnosing. It is very complicated and very expensive (I only did it because my insurance paid for it). You may not be aware of this test but it is the last resort when all else is exhausted.  Look up PROMETHEUS Therapeutics & Diagnostics. It is not a scam. When you dont have anything thing else, you have IBS. Bread is the only thing that makes me feel better and I need it to relax stomach before eating. Thank you for your comments anyway.

[patient915]

On celiac disease: I always recommend going 100% gluten free for 2 months to see if that helps when someone possibly has celiac disease.  This is what my gastroenterologist recommended to me, because you can have a gluten intolerance without having celiac disease.

I know about all of these places that offer "a test for IBS".  You diagnose IBS based on symptoms and negative tests for other diagnoses.  A lab test can show that you don't have something else, therefore making the possibility of IBS more likely.  Here is quote from the NIH (a very reputable site): "No specific test for IBS exists, although diagnostic tests may be performed to rule out other problems."

[joelcoqui]

Heres the thing. I have gone for 2, 3, even 4 months straight with normal bowel movements and perfect digestion eating everything. ...And just when I get my confidence back to go out and little away from home, a simple meal will set me back for a few weeks.That is why i think the IGA deficiency may have something to do with it. If a food has a little bacteria, I would get bouts of diarrhea on and off for a while. Like i said, i have had all other diagnostics to rule out other problems and after 5 years we came to this conclusion.  My dr. also believes the giardasis came back which can be missed with stool tests. It is hard to get rid of completely so he is recommending another run of the Flaygl antibiotic. I also think that is what killed my tummy even more back when I took it 5 years ago. I take probiotics most of the time but if I do the Flagyl again, I want to find a real good probiotic to take.  

[joelcoqui]

If I had celiac sprue or a celiac sensetivity, wouldnt I be running to the bathroom every time I ate gluten?....or lactose for that matter?  I am not lactose intolerant.

[patient915]

FurballsMom knows a lot more about celiac disease than me, but I believe that with any gluten intolerance/sensitivity your symptoms can seem to not be related to what you eat.  You can be fine for a little while eating a lot of gluten, and then your symptoms will return.  Eliminating gluten/lactose from your diet is such an easy thing to do compared to most tests (no pain, no risks).

[FurballsMom]

Not necessarily.  Not everyone with Celiac has this "classic" symptom of diarrhea.  That is a misconception.  Many Celiacs have constipation or symptoms of IBS-C, not diarrhea.