Deperately Seeking Advice in NJ

[KCur8790]

Hello Celiac Forum,

 

I will try to keep this brief but my story is a bit lengthy...I have been sick with severe gastrointestinal "issues" for 2 years.  After a battery of tests by a NJ gastro (who's initial thought was I had Celiac), including a celiac panel, colonoscopy, ultrasounds, SIBO test, and an abdominal CT scan, my doctor dismissed my condition as IBS-D and told me to deal with it.  I then went to another doctor who also suspected Celiac and he ran another panel which also came up negative.  He ran a few more tests and indicated I had "mild malabsorption syndrome" but could not tell me why.  This was based on a positive fecal fat test.  Probiotics and digestive enzymes have proven ineffective, and sometimes make me worse.   He then dismissed me saying it's IBS-D and sent me on my way.  The reason I continue to be slightly alarmed is my intestinal issues are drastically different than they have ever been in the past.  I've always has problems with IBS....this is WAY worse.  It's an everyday problem and NO over the counter medications work at all.  The positive fecal fat makes me nervous as well.  That usually indicates small bowel disease, but I have never had a small bowel scope.  So, long story short, is it REALLY possible to have a negative celiac panel and still have Celiac?  I read somewhere that it's possible, especially if you have Hashimoto's....yeap, got that too.  Anyone had a negative test and positive biopsy?  The two doctors I saw said no way.  Articles indicate otherwise.  Please help!

 

Immuniglo.  259  (ref 91-414)

IGA Glia 7  (ref 0-19)

Igg Glia  2 (ref 0-19)

IGA Ttg   <2 (ref 0-3)

[notme]

yes, false negatives are common.  my blood test came back neg, but i was already gluten free (at the advice of my doctor....)  so antibodies aren't present when we are not consuming gluten.  there are other reasons your test could be negative.  i know that the science kids on here are going to want the test parameters as well as the results.  i went for years suffering with the "ibs" "diagnosis"  <and, it's not a diagnosis, it's a symptom) or they told me it was 'colitis' - i lost so much weight the doc was going to put me in the hospital on a feeding tube.  not to mention the lovely migraines, terrible fatigue, itchy beyond belief rash, and constant "D"  i honestly thought i had cancer or something.  so, i got tested for EVERYTHING else (to rule it out) and when they did my endoscopy, the doctor could actually see the damage...  then the proof was in the puddin', after going on the gluten free diet, all these mysterious, seemingly unrelated symptoms cleared up.  my hair stopped falling out, my balance is better (not perfect, but i went 25 years misdiagnosed) i've not been sick in the past 5+ years, not a sniffle, not the flu, not the pneumonia i had every single winter!!  because my intestines are actually doing their job and my immune system is rocking like a champ   if i were you, i would get other things checked to make sure you weren't missing something different (chron's, thyroid, the dreaded cancer, gall bladder, etc) get the scope, and if your bloods are still neg, try the gluten-free diet.  i was ready to bury a potato with a statue of buddha on the north side of an oak tree during a full moon singing a tom petty song when i finally started to feel better.  <you get my drift lolz)  good luck from a jersey girl (west milford born & raised - clinton rd was my backyard   )

[notme]

ps - completely missed that you also have hashi's - and two docs told you it's unrelated??!!  wow.  just, wow.  makes ya wonder if they just want to make $$$$$$ treating the many symptoms of celiac...........  

[KCur8790]

thank you for your response and humor   All other things have been ruled out....colitis, crohns, tumors, gall bladder is crapped out but cholestyramine did not work, so bile acid malabsorption was ruled out.  I do believe I eat enough gluten so you would think they would spike antibodies.  But I read this quote in a book by Peter Green called Celiac-A hidden epidemic indicating 30% of celiacs don't have antibodies, especially if they have thyroidosis.  Makes me wonder if I am one of them....as a fellow Jersey girl, if you have a recommendation for a good doctor I'm all ears...I dumped last two doctors as they were very dismissive with me.  sigh....

[notme]

i have since moved to east tennessee, but i have friends up there who are celiac - whereabouts are you?   i can probably recommend a few restaurants if you're in north jersey

[cyclinglady]

4 hours ago, KCur8790 said:

Hello Celiac Forum,

 

I will try to keep this brief but my story is a bit lengthy...I have been sick with severe gastrointestinal "issues" for 2 years.  After a battery of tests by a NJ gastro (who's initial thought was I had Celiac), including a celiac panel, colonoscopy, ultrasounds, SIBO test, and an abdominal CT scan, my doctor dismissed my condition as IBS-D and told me to deal with it.  I then went to another doctor who also suspected Celiac and he ran another panel which also came up negative.  He ran a few more tests and indicated I had "mild malabsorption syndrome" but could not tell me why.  This was based on a positive fecal fat test.  Probiotics and digestive enzymes have proven ineffective, and sometimes make me worse.   He then dismissed me saying it's IBS-D and sent me on my way.  The reason I continue to be slightly alarmed is my intestinal issues are drastically different than they have ever been in the past.  I've always has problems with IBS....this is WAY worse.  It's an everyday problem and NO over the counter medications work at all.  The positive fecal fat makes me nervous as well.  That usually indicates small bowel disease, but I have never had a small bowel scope.  So, long story short, is it REALLY possible to have a negative celiac panel and still have Celiac?  I read somewhere that it's possible, especially if you have Hashimoto's....yeap, got that too.  Anyone had a negative test and positive biopsy?  The two doctors I saw said no way.  Articles indicate otherwise.  Please help!

 

Immuniglo.  259

IGA Glia 7

Igg Glia  2

IGA Ttg   <2

What were the lab ranges?  Also, the Glia could be one of two tests:

1)  Deamidated Gliadin Peptide (DGP) or 2) the Anti-Gliadin (this test has been replaced by thenewer DGP in the US and the UK) because it is not as  accurate.  Might be worth reviewing your lab report.  

I have Hashi's and I can tell you that I only test (first time and follow-up) positive on the DGP IgA.  My TTG is always negative?  This occurs in small kids (well....I guess this confirms that I am a kid at heart!)  

[Palvyre]

12 years before diagnosis I was having chronic diarrhea, acid reflux, and bouts of severe abdominal pain. I was sent to a GI specialist and they ran a bunch of tests, including a Celiac blood panel that came back negative. I was also told I had IBS and GERD and sent on my way. Fast forward 12 years and I was having the same issues, but worse. I was now also lactose intolerant and having issues with fructose. I was tested for everything under the sun again. This time my Celiac blood panel popped back strong positive across the board. Follow up testing shows that I now have osteoporosis as well. I really wish we could have figured out the issue 12 years earlier. My teeth are also falling apart due to demineralization. I am a little over 2 years gluten-free and all my GI symptoms are gone. I am still lactose intolerant and have issues with high fructose fruits, but other than that I am great. 

[KCur8790]

16 hours ago, notme! said:

i have since moved to east tennessee, but i have friends up there who are celiac - whereabouts are you?   i can probably recommend a few restaurants if you're in north jersey

I am in northern Jersey but can travel anywhere in NJ or Metro NY.  Thank you! 

[KCur8790]

15 hours ago, cyclinglady said:

What were the lab ranges?  Also, the Glia could be one of two tests:

1)  Deamidated Gliadin Peptide (DGP) or 2) the Anti-Gliadin (this test has been replaced by thenewer DGP in the US and the UK) because it is not as  accurate.  Might be worth reviewing your lab report.  

I have Hashi's and I can tell you that I only test (first time and follow-up) positive on the DGP IgA.  My TTG is always negative?  This occurs in small kids (well....I guess this confirms that I am a kid at heart!)  

I added ref ranges...I'm well within the "normal".  Not sure which test they did. 

[KCur8790]

13 hours ago, Palvyre said:

12 years before diagnosis I was having chronic diarrhea, acid reflux, and bouts of severe abdominal pain. I was sent to a GI specialist and they ran a bunch of tests, including a Celiac blood panel that came back negative. I was also told I had IBS and GERD and sent on my way. Fast forward 12 years and I was having the same issues, but worse. I was now also lactose intolerant and having issues with fructose. I was tested for everything under the sun again. This time my Celiac blood panel popped back strong positive across the board. Follow up testing shows that I now have osteoporosis as well. I really wish we could have figured out the issue 12 years earlier. My teeth are also falling apart due to demineralization. I am a little over 2 years gluten-free and all my GI symptoms are gone. I am still lactose intolerant and have issues with high fructose fruits, but other than that I am great. 

Interesting you say you've had symptoms for years...I've had a very sensitive stomach since early 20's.  I've also had mild constant tingling on the bottom of my feet and balance issues.  But both very mild and I've always been too scared to get those investigated.  Now reading more about Celiac I'm wondering if they are all related.  What's even more interesting, I recall when I did the Atkins/low carb thing about 10 years ago I had zero digestive issues.  Hummmm....

[GFinDC]

I think there's also a thing where people who have dermatitis herpetiformis will sometimes test negative for celiac disease.  A negative blood test does not mean you definitively don't have celiac.  The tests are not 100% perfect.  Some people don't make a lot of IgA antibodies anyway so they won't show positive on IgA tests.

You could go ahead and make some changes in your diet now though.  Taking out dairy may provide some symptom relief.  You could also eliminate or severely reduce carbs and sugar.  Neither of these changes should affect celiac disease testing.

[cyclinglady]

16 hours ago, Palvyre said:

12 years before diagnosis I was having chronic diarrhea, acid reflux, and bouts of severe abdominal pain. I was sent to a GI specialist and they ran a bunch of tests, including a Celiac blood panel that came back negative. I was also told I had IBS and GERD and sent on my way. Fast forward 12 years and I was having the same issues, but worse. I was now also lactose intolerant and having issues with fructose. I was tested for everything under the sun again. This time my Celiac blood panel popped back strong positive across the board. Follow up testing shows that I now have osteoporosis as well. I really wish we could have figured out the issue 12 years earlier. My teeth are also falling apart due to demineralization. I am a little over 2 years gluten-free and all my GI symptoms are gone. I am still lactose intolerant and have issues with high fructose fruits, but other than that I am great. 

I am glad you are doing better!  I too, am much better!  My last bone scan showed that I was holding steady (I was hoping for an improved score), but I have not had a fracture in two years!  I focus on strength training and a good diet.  

Best wishes! 

[cyclinglady]

23 hours ago, KCur8790 said:

Hello Celiac Forum,

 

I will try to keep this brief but my story is a bit lengthy...I have been sick with severe gastrointestinal "issues" for 2 years.  After a battery of tests by a NJ gastro (who's initial thought was I had Celiac), including a celiac panel, colonoscopy, ultrasounds, SIBO test, and an abdominal CT scan, my doctor dismissed my condition as IBS-D and told me to deal with it.  I then went to another doctor who also suspected Celiac and he ran another panel which also came up negative.  He ran a few more tests and indicated I had "mild malabsorption syndrome" but could not tell me why.  This was based on a positive fecal fat test.  Probiotics and digestive enzymes have proven ineffective, and sometimes make me worse.   He then dismissed me saying it's IBS-D and sent me on my way.  The reason I continue to be slightly alarmed is my intestinal issues are drastically different than they have ever been in the past.  I've always has problems with IBS....this is WAY worse.  It's an everyday problem and NO over the counter medications work at all.  The positive fecal fat makes me nervous as well.  That usually indicates small bowel disease, but I have never had a small bowel scope.  So, long story short, is it REALLY possible to have a negative celiac panel and still have Celiac?  I read somewhere that it's possible, especially if you have Hashimoto's....yeap, got that too.  Anyone had a negative test and positive biopsy?  The two doctors I saw said no way.  Articles indicate otherwise.  Please help!

 

Immuniglo.  259  (ref 91-414)

IGA Glia 7  (ref 0-19)

Igg Glia  2 (ref 0-19)

IGA Ttg   <2 (ref 0-3)

Yes, negative but look at this.....

Open Original Shared Link

Not everyone makes antibodies......

Open Original Shared Link

And if not celiac disease, your doctor should rule out other things that damage villi:

Open Original Shared Link

[maremidwest]

I do not know if you have celiac. No offense to doctors but my experience is that they are best in acute situations. When you have a chronic situation and are female, they discount your symptoms. I too went to a gastroenterologist who ignored me. Often the specialist are no better diagnosticians and only looking at their own specialty.

If you are able, you need to be proactive on your own behalf. You could try an integrative physician. When I had problems that is who diagnosed two conditions that were overlooked by my regular internist. It made a huge difference in my life.

In addition, I found I was sensitive to food preservatives and additives. Dough conditioners, sulfites, nitrates, etc. Eating a diet without "additive added" processed foods (newer natural foods in stores offer many alternatives) and as natural as possible may be a help. Going gluten free may help. If this doesn't help then you may have food sensitivities. Corn, milk, eggs or soy and less common sensitivities.

I would advise you to seek a "wellness oriented" wholistic health professional. Someone that will help you find the cause, not brush you aside or hand you a prescription.

I hope this helps.

 

 

 

 

 

[SLLRunner]

On 3/25/2016 at 6:14 AM, KCur8790 said:

Interesting you say you've had symptoms for years...I've had a very sensitive stomach since early 20's.  I've also had mild constant tingling on the bottom of my feet and balance issues.  But both very mild and I've always been too scared to get those investigated.  Now reading more about Celiac I'm wondering if they are all related.  What's even more interesting, I recall when I did the Atkins/low carb thing about 10 years ago I had zero digestive issues.  Hummmm....

I have not yet been diagnosed (doing a gluten challenge now for celiac blood testing, and will also be tested for food allergies), but when I did the McDoughall Diet, which then was all whole food, no dairy, not meat and no gluten, I had no digestive issues.  It was after I went back to my regular diet several months later that I found I was lactose intolerant, then about five years later I became soy intolerant.  Also, right after an endoscope to investigate my chronic and horrible acid reflux, I went gluten free for about a month and felt better. Now that I'm doing this gluten challenge, I feel horrible again. 

 

[notme]

On 3/25/2016 at 9:08 AM, KCur8790 said:

I am in northern Jersey but can travel anywhere in NJ or Metro NY.  Thank you! 

ok, sorry it took so long to get back!  my one friend said that he has dr rimma sherman in west orange.  i think she is a holistic md but if that doesn't work, she might can point you in the right direction.  lolz, from the tone of my friend's answer, i can surmise that he hasn't had such a wonderful time with g.i. docs up there, either!!  makes ya wonder why the medical profession is so loathe to give a celiac dx.....  is it because they can't sell you a pill or a cream or a treatment.....