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Conflicting Bloodwork

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A few months ago I was told by my internist that I tested positive for celiac. I had the blood test re-done last week in a GI specialty group and found out today that I was negative, "well within the norms". Proir to this I had IBS every now and then. I have diarrhea a few times a month, yet, I have a cramping feeling on my right side -- from beltline to lower pubic area every now and then...it sems to come and go and I know when I'm stressed it seems to occur more frequently. I avoid lactose as mucha as possible but will cheat once in a while and there's a 50/50 chance that I get symtoms. I seem to be gassy and my bowel movemnets sometimes seem flattened a bit when I am experiencing that cramping feeling. I was assessed with spastic colon 20 years ago. What should I do about the conflicting blood results? Is it possible that I am sensitive to certain foods or is this a stress related phenomenon. I had a colonoscopy 2 years ago and everything is fine. I turn 49 next month......I have no weight loss and all the other symptoms. Please help and advise.

Thanks!

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Get a copy of your lab results and post them here...someone will be happy to interpret, I'm sure. I would hope that your GI doc knows more about how to interpret celiac labs, but don't be too sure!

Also, do some research on what all the lab tests mean. (see www.celiac.com or

www.clanthompson.com for good reviews on the topic)

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I have some blood results regarding the conflicting bloodwork:

First Dr. found Transglutaminase 8 and Gliadin 28

A second Dr. found Transglutaminase 1.2 and Gliadin 23

The second Dr. said I was negative for celiac and the 1st Dr. said I was positive.

Please offer any help out there. Is it true that different labs use different methods of reference? Any help on these results would be appreciated.

Thanks a million!

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Is it true that different labs use different methods of reference?

Yes, that's true. Normally the Antigliadin (otherwise referred to as AGA) is usually normal < 20. If this were the case for you, then you're positive both times, yet only slightly on the 2nd... but, still positive. Now, there are two types of AGA... IGG & IGA. It might help you to find out which one.

I don't know much about the Ttg levels... sorry!

My AGA Igg level was the first to elevate... then a year later the Iga showed up positive. I believe if you're experiencing symptoms and you've got antibodies showing up, then you're seeing that your body isn't liking gluten too much. PS... in case you're wondering if it's just an allergy, an IGE antibody would show up for that.

Doctors are very protective about the celiac diagnosis, unless they can prove it 100%. In your case, they might say you're gluten intolerant (which I think is just a pre-celiac condition).

Fun stuff huh?

Gretchen

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I'm still confused! After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance". Are they the same. I'm 49 years old, would extensive damage occurred by now? I'm not interesyed in having the invasive endoscopy which one Dr. said is the gold standard. I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive. I have noticed that some foods cause more symptoms than others (spicy, broccoli, dairy, grainy mustards, nuts, chocolate). I would rate wheat items -- breads, pastas, etc. as being the food items that do NOT bring on symptoms. My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested??? The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

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Licel.

My IGA antibody was elevated, biopsy neg, no damage to the villi.

GI doc said he can't prove I don't have Celiac and can't prove I do

have celiac disease. Because my gene test was neg, I think that there are two separate

diseases (in my humble opinion), similar in symptoms, treated by

gluten-free diet. I was really sick for 2 years. I spent last summer in bed,

curled up in a fetal position. This summer I am pain free/symptom free.

Until someone proves different I have gluten sensitivity.

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Thanks for your reply.....

2 years ago I had a calcium oxalate kidney stone. On the enterolab site it said this "could" be related to malabsorption of calcium.???

I'm trying to avoid the invasive endoscopy test. Would my GI Dr. be able to do a gene test? The enterolab site seems to say that the stool test is much better than a blood test.....the more I read, the more confused, and anxious, I become.

The feedback is greatly appeciated....any response to LICEL postings would helppppp!!!

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Licel,

If you are 49 years old I would advise you to have the scope with the

biopsy and also the colonoscopy. They really aren't bad and you will get some answers to your questions.'

Yes, a GI doctor can do the gene test, they have to be sent to a special lab.

Another thing I wanted to tell you is that after my scope was finished my

doctor showed me a picture of another problem, I have Barrett's ring

around the esophagus. It is caused by the acid in the stomach splashing

up into the esophagus and must be checked every year because it can sometime lead to cancer.If I had not had this done i wouldn't have known it. Don't you

think that having the endo would help end the stress your under. When you find out the problem, you can make informed choices on how to treat it. Good luck to you..

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I'm still confused!  After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance".  Are they the same. 

I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive.

My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested???

The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

Licel,

I'll give you the Gretch's dictionary definition on the Celiac vs. Sensitivity/Intolerance. ;) ... but, I don't know if it will help.

Celiac disease & Gluten Intolerance are pretty much the same... however, celiac is where there is evidence (visually by eye and/or microscope) that there is damage to the small intestine due to a protein found in wheat, rye, barley, oats called gliadin. There are supposedly 1 in 133 that have a genetic disposition to not be able to tolerate this protein in their bodies and their immune system launches an attack via antibodies (ie: IGG, IGA). Some of the other tests that your doctor runs, like the Ttg & Ema can also check for immune response and are somehow sensitive to those who have damage.

Those of us without 100% positives any or all of these blood tests and/or haven't shown any damage with a biopsy, are sometimes told by our doctors that we don't have celiac (damage to the intestines due to an autoimmune response to gliadin). Not many tell us that however, that we're still having an immune response to gliadin (gluten intolerance / sensitivity), but we haven't suffered damage... yet. That's why most of us are here.

We're suffering the symptoms of an immune response to gliadin (the same as a celiac), but our condition hasn't fully developed yet. Some doctors don't like to see their patients go on a gluten-free diet unless they're 100% diagnosed. But, many of us don't care... we just want to feel better and be healthy and prevent what we believe would be inevitable (full-blown celiac) if we went untreated.

... and please don't accept IBS... I spoke with my (former) doctor the other day and he wanted to give me that and I have antibodies to gliadin! He admitted that's where doctor's put people that they just don't know what's causing their symptoms.

And yes, different labs have different ranges of normal, etc... but, the lab will usually tell you what they are on the results.

Good luck!

Gretchen

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I received a copy of the results in the mail today from the 2nd Dr. who said I am negative. Can anyone out there help interpret these?? I do plan for a followup visit to talk.

Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)...for both of these tests, the report indicates I am in normal range..asis also the case with the results above.

What about EMA...should that have been tested??

Any help or feedback would be apreciated.

Thanks!!!

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Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)

I am a bit confused by the reference ranges. Usually the range for Gliadin is 20 or 30 depending on the lab. I have never seen it be as high as 45. And I wish they had considered the TTG IgA Abs reference range "less than 4 = negative" for my test. I had a 9 and they said it was negative if less than 20! I guess it is the diefference in labs. Maybe my blood tests would not have been considered negative!

By other labs standards your Gliadin tests would be weak positives.

God bless,

Mariann

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so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

i also had a gliadin IGA at 8 units, but there was NO reference range on the test result for that test. unless it's assumed to fall under the same as the gliadin IGG.

any thoughts?

this test was done two years ago, and i had a neg. biopsy. should i get the bloodwork done again?

luckily i just made an appt with a nutritionist for next week... maybe she'll give me a better answer than "IBS!"

monica

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Monica,

so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

I was told my Igg @ 33 (normal < 20) was a false positive and I believed it. A year later, my Igg has elevated even more and my Iga is now a part of the story. I would have to say to listen to your body... ultimately, you know your body best. Conditions that cause your intestines to be more permeable (leaky gut) can cause your Igg to elevate. It has something to do with those gluten proteins leaking into your bloodstream and irregardless of why they're there... a gluten free diet has still been benefitial to many.

It's always good to get your blood tests re-run and I've already decided to do it regularily (when I visit my doctor).

I myself am joining the ranks of those who don't want to be full-blown celiac before treatment. You won't be alone if that's what you decide :)

Gretchen

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Going for biopsy tomorrow. I understand several biopsies will be taken. Will I get the results right after the test or sometime that day? Does the Dr. ead the slides of the biopsies or does the pathologist? Both? The test is being done in a hospital under general anesthesia. I'm anxious!!!! I hope all is well and other problems aren't found... Dr. predicts biopsies will be negative and I have IBS based on bloodwork as previously posted. We'll see.....

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Just a note for people out there to people who may have put off the biopsy like myself. The test was easy and I shouldn't have put myself through all the anxiety. I had it done in a hospital. You are put to sleep and you don't feel anything during or after. I hope the biopsy rules out celiac. Is it possible that celiac can develop later even if the biopsy of the villi is negative? I understand the pathologist reads the slides and scores the biopsies??

My gastro Dr. also recommended a pelvic catscan with contrast dye to rule out other issues including possibly even a hernia. I do get a cramping feeling and he still believes it's IBS. He advised/prescribed Librax until results are in. (PS another Dr. prescribed this and I found it helped, but this whole proces started with those initial blood tests)

My advice to all -- have the tests and avoid the worry! Peace of Mind is worth a million bucks. This board has helped tremendously.

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Is it possible that celiac can develop later even if the biopsy of the villi is negative?

YES! It is possible, especially if you are having obvious reactions to gluten.

I'm glad the endoscopy went well for you. :)

God bless,

Mariann

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As indicated....I had the biopsy completed (since my bloodwork was conflicting) in a hospiatal setting on the day after my birthday. The next day, I had a complete abdominal catscan (drinking barium solution with contrast solution pumped in intravenously during test).

GREAT NEWS!!!

All tests were negative. Stress and lactose intolerance seem to be the problem which results in spastic colon during these times. I also have some trigger foods and wheat prodicts seem to be ok.

MY ADVICE TO ALL......HAVE THE BLOODTESTS AND ENDOSCOPY DONE TO PUT ALL FEARS TO REST. I will use some gluten free foods since I was researching and trying different foods just in case.

Keep this message board going...It was a great help!!!

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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