Newly diagnosed IBS for 12 years

[JonBNF]

Thanks guys. I think my concern is my ttg is showing negative test results and after getting a second opinion I was told that my labs aren't showing anything outstanding to suggest celiac. So I'm worried something else is being overlooked. Should I request ttg-igg even though my iga numbers are high. 

[cyclinglady]

On November 15, 2016 at 5:13 AM, JonBNF said:

Thanks guys. I think my concern is my ttg is showing negative test results and after getting a second opinion I was told that my labs aren't showing anything outstanding to suggest celiac. So I'm worried something else is being overlooked. Should I request ttg-igg even though my iga numbers are high. 

WTF!  I tested positive to ONLY the DGP IGA.  The rest of my blood panel was negative.   Even in follow-up testing (after a glutening) I still test negative to all but the DGP IGA.  My GI does not even bother to order the TTG anymore for me.  It takes only one positive on the panel.  Not all the celiac tests are perfect or catch everyone.   My biopsies revealed a Marsh Stage IIIB which is moderate to severe.  

Your doctor told you to go gluten-free before going to a GI and getting an endoscopy.  He is woefully misinformed.  You need a new doctor!  So, do not listen to him or her about celiac disease.   You turned down the endoscopy with the GI.  She thinks you have celiac disease.  Either accept that you have celiac disease And live gluten-free or get the endoscopy and consume gluten for two weeks prior.  Your choice.  

Personally, I would want to rule out other things (you can have multiple issues).  It might not just be celiac disease (SIBO, H. PYLORI, CROHN'S) etc.  

[JonBNF]

Does anyone know if my gliadin tests are the old tests or the newer dgp test? 

[cyclinglady]

46 minutes ago, JonBNF said:

Does anyone know if my gliadin tests are the old tests or the newer dgp test? 

Who cares?  It was a positive.  The old tests are hardly around any more, but they were still pretty good.  The DGP is better, but in your case it does not matter.  It might matter if it were negative.  

[JonBNF]

I got the pathology report back. Normal villi. But I have Barrett's esophagus. I had the blood work done for dgp and hla waiting for those results. Now I don't know if this is a false negative considering I was gluten free for 2 weeks prior to the biopsy and according to the dr he only took one biopsy. 

[GFinDC]

Hi Jon,

You got a positive on the antibodies, so that's pretty definitive.  Doctors like to get the biopsy to confirm actual gut damage is happening because of the antibodies.   That's not really a perfect thing to decide on because in some people the antibodies attack the skin instead, or the brain, or the liver, or the joints.  So not having gut damage doesn't mean you aren't having celiac damage in other parts of your body.

The doctor really should have taken more biopsy samples also.  U of Chicago recommends 4 to 6 biopsy samples.

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Are biopsies of the small intestine conclusive?

Generally, antibody blood tests and biopsies are sensitive and specific enough to clearly diagnosis celiac disease. However, because no test is perfect, a firm diagnosis should include antibody blood screening, biopsies and response to a gluten-free diet. Although biopsies are the standard for diagnosis, periodically they do not lead to a clear diagnosis. Many factors can contribute to an unclear biopsy, such as:

• Incorrect orientation of the biopsies when taken from the small intestine.
• Insufficient number of biopsies from a broad sample of the small intestine.
• Inexperience of the pathologist.
• Gluten-free diet started prior to biopsies.

June, 2013

[GFinDC]

Some more info:

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How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional. December, 2012

[cyclinglady]

Once again, your doctor seems not to be following standard protocol for diagnosing celiac disease.  

 Read this medical article.  Look at table 4.  Note that since you had a positive blood test, you still have the potential for a celiac disease diagnosis.  

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[JonBNF]

I'm asking friends and researching to find new drs. Right now I have to rely on these drs. It takes so long to get into drs. I'm thinking maybe I have gluten ataxia it's either that ms fibromyalgia or Lyme disease found a tick in the summer when I was taking a shower but I was never bit. My main symptoms are vertigo weird mild tingling in my calfs and feet. Sudden  dizzy type rush that I think is vertigo. Also when I take a shower or do anything that involves a bunch of movement the tingling gets more intense all over my body when I stop. Legs and arms feel weak. My stomach symptoms are still up and down but much improved weight has stabilized and I seem to be putting back on lbs. also this all started when I took omeprazole all I had before that was upper abdominal pain. But when I think back I did have some of these symptoms but so mild that I never thought anything of them. Thought maybe my ears were clogged which tends to happen. Thanks all again for the replies. This forum has been a wealth of information that I am extremely grateful for. 

[JonBNF]

I got back my asca test. As you can see it's positive. It seems to mirror my aga test. From online research this can mean a few things. I have celiac and I'm cross reacting to yeast. I have crohns which was suspected in the past. Or I have an allergy to gluten and yeast. Anyone know much about this? Still waiting on my dgp and hla test. Also waiting for results from the rheumatologist and vitamin and mineral test I requested. I noticed my b12 although "normal" was in the high 460's last year it's not in the 320's. 

[JonBNF]

I got some more labs back. I'll lay it all out as if right now.

iga-475

ttg iga-2.35

Dgp iga-8

Dgp igg-2

aga iga-21.9

aga igg-10.25

asca iga-29.8

asca igg-16.1

np at gastro told me the asca numbers are the same from when I had the test done roughly 10 years ago when they scoped me and looked for crohns and found everything was normal and diagnosed me with IBS. My concern is the asca numbers nearly mirror the aga numbers and if those are the same now than maybe those antibodies are permanently there from a past illness which I've read could be the case and I don't have celiac and all my sudden onset of symptoms are something that is going undiagnosed. I've been gluten-free for 3 weeks now and I don't notice any real improvements. She told me the dgp is negative but I would still go gluten free. I'm worried it's undiagnosed Lyme or the start of pernicious anemia. My b12 went from 468 to 324 in a year. Scared out of my mind been out of work for a month don't really know what the next step is. Maybe a second opinion from a another gastro. 

[cyclinglady]

Ask your GI for a pill camera.  Not saying that celiac disease is not possible, but you have an elevated asca.  A pill camera caught my niece's Crohn's diagnosis.  Her damage at the end of her small intestine was pretty severe, yet she did NOT display any typical Crohn's symptom except for rare pain (every other month or so).  

[JonBNF]

32 minutes ago, cyclinglady said:

Ask your GI for a pill camera.  Not saying that celiac disease is not possible, but you have an elevated asca.  A pill camera caught my niece's Crohn's diagnosis.  Her damage at the end of her small intestine was pretty severe, yet she did NOT display any typical Crohn's symptom except for rare pain (every other month or so).  

That's the one test I've never had. I had the one where I drank white chalky stuff and then took an X-ray and I've had 3 colonoscopies all came back negative for crohns. Every ct scan negative every sonogram negative. She doesn't seem concerned considering those numbers are the same as they were 12 years ago. I think it's time for a different gi. What's ironic is my upper right abdominal pain has come back every other month or so. 

[cyclinglady]

31 minutes ago, JonBNF said:

That's the one test I've never had. I had the one where I drank white chalky stuff and then took an X-ray and I've had 3 colonoscopies all came back negative for crohns. Every ct scan negative every sonogram negative. She doesn't seem concerned considering those numbers are the same as they were 12 years ago. I think it's time for a different gi. What's ironic is my upper right abdominal pain has come back every other month or so. 

My 20 year old niece has been sick for four years.   Stomach pain that occured infrequently, but severe enough to be taken to several ER departments around the U.S.   Finally, her 4th GI ordered a pill camera.  She had extensive damage at the end of her small intestine where ONLY the pill camera can travel.  He was surprised that she is not in pain daily.  She tested negative to everything else, including SIBO. H. Pylori, celiac disease, etc.   She had several endoscopies, CT scans, HIDA scan,  and colonoscopies which were all negative.  

We were hoping for a celiac disease diagnosis as Crohn's can be much worst.  For celiac disease the trigger is gluten, but who knows for Crohn's or any other autoimmune disorder?  Crohn's affects the entire intestinal tract.  It is under the umbrella of "Inflammatory Bowel Disease" which also includes  Ulcerative Colitis which only affects the large intestine.  

A pill camera may reveal something.  

[GFinDC]

On 11/27/2016 at 7:14 PM, JonBNF said:

I'm asking friends and researching to find new drs. Right now I have to rely on these drs. It takes so long to get into drs. I'm thinking maybe I have gluten ataxia it's either that ms fibromyalgia or Lyme disease found a tick in the summer when I was taking a shower but I was never bit. My main symptoms are vertigo weird mild tingling in my calfs and feet. Sudden  dizzy type rush that I think is vertigo. Also when I take a shower or do anything that involves a bunch of movement the tingling gets more intense all over my body when I stop. Legs and arms feel weak. My stomach symptoms are still up and down but much improved weight has stabilized and I seem to be putting back on lbs. also this all started when I took omeprazole all I had before that was upper abdominal pain. But when I think back I did have some of these symptoms but so mild that I never thought anything of them. Thought maybe my ears were clogged which tends to happen. Thanks all again for the replies. This forum has been a wealth of information that I am extremely grateful for. 

Hi Jon,

The vertigo symptoms could be a result of a drop in blood pressure.  I had fainting spells at one point from blood pressure falling.  I had a brain check and all that  checked out reasonably working.  It was related to diet as it turned out.  Blood pressure would drop and I'd get dizzy or pass out.  I thin they call it a vaso something or other reaction.  Ok, here it is vasovagal syncope.

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Vasovagal syncope (vay-zoh-VAY-gul SING-kuh-pee) occurs when you faint because your body overreacts to certain triggers, such as the sight of blood or extreme emotional distress. It may also be called neurocardiogenic syncope.

The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly. That leads to reduced blood flow to your brain, causing you to briefly lose consciousness.

Vasovagal syncope is usually harmless and requires no treatment. But it's possible you may injure yourself during a vasovagal syncope episode. Your doctor may recommend tests to rule out more serious causes of fainting, such as heart disorders.

Vasovagal syncope occurs when the part of your nervous system that regulates heart rate and blood pressure malfunctions in response to a trigger, such as the sight of blood.

Your heart rate slows, and the blood vessels in your legs widen (dilate.) This allows blood to pool in your legs, which lowers your blood pressure. Combined, the drop in blood pressure and slowed heart rate quickly reduce blood flow to your brain, and you faint.

Sometimes there is no classical vasovagal syncope trigger, but common triggers include:

• Standing for long periods of time
• Heat exposure
• Seeing blood
• Having blood drawn
• Fear of bodily injury
• Straining, such as to have a bowel movement
•  

Blood tests. Your doctor may look for conditions, such as anemia, that can cause or contribute to fainting spells.

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I think my v. syncope was caused by a reaction to soy and possibly nightshades.  But I think the soy was the main culprit.  Food intolerances can cause all kinds of weird symptoms.

I never fainted from being shocked by something someone said or did though, like the women in old movies do.  It was definitely a food reaction.  Old movies are full of beans sometimes!

[JonBNF]

Got the gene test back. I was told it's negative. I think it's safe to say I don't have celiac. If anything I have sensitivity. Not that I was praying to have celiac I certainly rather have it over crohns which is still up in the air. I'm going to a different GI Monday they're part of prominent medical school so I'm thinking the treatment will be better there. This frustrating cause I'm seriously weak. 

[frieze]

negative gene test, in the USA, does not r/o celiac.  just ask Ravenwoodglass....