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Utter Confusion


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13 replies to this topic

#1 TGL

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Posted 26 April 2012 - 12:35 PM

I'm a 41 yo blk female whose been dealing with various symptoms as far back as when I was a teenager. My symptoms over the years have included the following.....

-Intensive stomach cramps to the point of breaking out in a cold sweat. Pain so intense that I've often felt like I was going to past out. Relieved after bowel movement(diarrhea)
-Stomach bloating after I eat, where I look like could be several months pregnant.
-Upset stomach/nausea.
-Stomach makes gurgling noises.
-Gas
-Migranes

Several years ago, I was diagnosed with Acid Reflux and given Aciphex which gave me temporary relief. Within a few months, the upset stomach returned and I was switched to Prilosec. Still with no relief, I was referred to Gastro. Preceded with the Endoscopy and it was determined that I had a Hiatal Hernia. I was told to limit caffeine and greasy foods and up my Prilosec to twice a day. I did receive some relief for a while and dealt with the occasional issues every now and then.

Over the years, I've never had all the symptoms at one given time, but now they seem to be overlapping. A few weeks ago, I had eaten a bagel and within ten minutes I was in horrible pain. I alternated between sitting on toilet and laying on the floor until relief came with a BM. As I layed their and replayed all theses issues I've dealt with, I came to the realization that this is not normal. I looked up IBS and Celiac as possibilities. I noticed that Celiac is rare in African Americans so I assumed that it wasn't an option to consider.
I went to see my doctor thinking it might possibly be IBS and she sent me to the lab for blood tests to include Celiac. At this point, I'm loosing weight and it seems like everything I'm eating is upsetting my stomach. Went back for my results and she tells me I tested positive for Celiac.

H Pylori Ab Negative
IGA 563 (81-463)
Endomy IGA Negative

Go to the Gasto Doctor and he looks at lab work and he's questioning how she was able to determine that based on those numbers. So now, I have a Endoscopy scheduled for next week and more lab work. He ordered the following tests.....
Sed. Rate, Westgren
C-Reactive Protein, Quant.
164830 IBD 7 Panel.
Now I'm sitting here confused because I feel like I'm getting mixed results. I thought I had at least had a bit of a resolution, but he seems to throwing up other possibilities such as gluten intolerance, IBD or ulcerative colitis.
Any help would be greatly appreciated.
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#2 Takala

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Posted 26 April 2012 - 02:18 PM

The "Gold Standard" diagnostic standard for celiac disease, by a Gastro Doc, currently stands at a positive blood test for an antibody reaction to gluten proteins, AND a positive biopsy of the small intestine for damage to the lining villi. Unless you have the skin condition DH, which can also be a way to diagnose via biopsy.

Some of the More Enlightened PCPs who have patients who have all the symptoms, but who cannot have their test results for both categories match and come out "positive," will diagnose with just a blood test, or even belatedly grant "gluten intolerant" status on people who had symptoms and responded positively to diet, because they have studied the statistics which indicate that a significant minority do not test positive. Celiac is technically a form of "gluten intolerance gone wild," to the point of it turns into auto immune disease.

Celiac genes are surprisingly common in some North African and even Middle Eastern ethnic groups, so never say never. Have a look at this wikipedia page on HLA DQ8 http://en.wikipedia.org/wiki/HLA-DQ8

With your symptoms and blood test results, even if your endoscopy test result does not come out positive, after all testing is finished, try the gluten free diet anyway, to see if it helps resolve your symptoms. ( A lot of us think that an "IBS diagnosis" is a bunch of hooey.) If you are completely cow dairy intolerant now, you may regain the ability to eat some cheese and yogurt later, once you have been on a gluten free diet for awhile, because developing lactose intolerance is one of the symptoms of celiac, as the damaged part of the intestine also affects the ability to handle lactose.
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#3 TGL

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Posted 26 April 2012 - 02:51 PM

Thank you for the response and the additional information., i will definetly check out the link. Do you think my doctor was wrong to say I tested positive based on the results I provided?
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#4 pricklypear1971

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Posted 26 April 2012 - 03:34 PM

I think your doctor dxed you based on symptoms and a positive test (one of many for celiac). The GI wants to scope you and look for other issues.

You are stuck in the middle.

AND the worst part is that your doc didn't order all the Celiac tests, and the doofus GI didn't order them either and only wants to try to prove your doc wrong.

You need more Celiac tests run. You need to ensure that doofus GI takes about 8 Celiac biopsies on scope.

What is the full description of that IgA test? Is it total IgA ?

Here's a description of all Celiac tests: http://www.curecelia...s3_Antibody.pdf

Get them ALL. I'd get your primary doc to run them since s/he seems open to the idea of Celiac. Tell the doc what's happening with the GI and you know the other tests aren't being run, and you aren't comfortable.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 TGL

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Posted 26 April 2012 - 04:32 PM

Thanks, I also felt like he blew off the original findings as well. When I look at the results from Quest it only shows IGA & Endomy IGA. I think I received a scaled down version of my results to take with me to the GI. I'm going to call the GI's office in the morning to request the full panel before I go over to LabCorp. I couldn't tell if the GI was just going to disregard the results and just base everything off of the endoscopy instead. If he does push back, I'll follow-up with my regular doc for the additional tests. Does the IGA 563 mean anything at this point?
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#6 Skylark

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Posted 26 April 2012 - 04:41 PM

H Pylori Ab Negative
IGA 563 (81-463)
Endomy IGA Negative

The celiac test here is endomysial and it's negative. However, it's only positive in about 70% of celiacs. Your high total IgA can indicate autoimmunity but it's not really a celiac test.

Celiac may be less common in African Americans than Caucasians, but I haven't read that it's rare. Peter Green had some African American celiacs come through his clinic. http://www.ncbi.nlm....pubmed/16642428 You sure have a lot of symptoms. I'd ask for better celiac testing and I don't see any of the currently recommended celiac tests on your list. I don't know what's in the IBD7 panel though. You might call the office and confirm that you're getting TTG IgA and deamidated gliadin IgA and IgG. Good luck!
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#7 TGL

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Posted 26 April 2012 - 04:55 PM

Thanks for the advice. I'll come back soon with an update.
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#8 MitziG

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Posted 26 April 2012 - 07:57 PM

I agree. Request a full celiac panel, and insist the dr take several biopsy samples- many do only 1 or 2 and it can easily be missed. As soon as that is done, start a gluten-free diet. Testing only dx a fraction of people who have celiac, and it won't show non-ceeliac gluten intolerance either. Chances are very good you will find relief. As for the issue of race- I suspect that is changing. Whatever enviromental factors have caused the rate of gluten intolerance/ celiac to skyrocket in general, is likely affecting all people, regardless of heritage.
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#9 pricklypear1971

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Posted 26 April 2012 - 08:40 PM

This is what the Lab Corp test panel the GI ordered includes:

https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCusNB9uHXD5I3wAEcDfT9PPJzU_ULciMMskwcFQE99Pf1/dl2/d1/L0lDU0NTQ1FvS1VRIS9JSFJBQUlnb0FNeUtibTZtL1lCSkp3NDU0a3N1eWx3ISEvN19VRTRTMUk5MzBPR1MyMElTM080TjJONjY4MC9zZWFyY2hCeUtleXdvcmQ!/?criterion=164830

Test Includes: Atypical perinuclear antineutrophil cytoplasmic antibodies (pANCA); Saccharomyces cerevisiae, IgA; Saccharomyces cerevisiae, IgG

Use: Rule out Crohn's disease and ulcerative colitis

It does not include Celiac testing.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 MitziG

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Posted 26 April 2012 - 11:56 PM

Ugh. The ignorance that pervades the medical profession overwhelms me. You are the customer, you pay the bill. March back in there and politely but FIRMLY tell them what tests they need to do.
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#11 TGL

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Posted 27 April 2012 - 02:38 AM

Will do. Thanks for all the great advice.
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#12 TGL

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Posted 02 May 2012 - 10:56 AM

Ok. Had my Endoscopy this morning. My Mother came with me and the first thing he said her asked was, were you the one who has Celiac? She answered no, but was told to stay away from gluten many years ago. He sat down and told me that everything looked good with the exception of some redness around the stomach (Gastritis). Also told me that he took several good samples and the results will be back in five days. If the results come back normal, he'll schedule a colposcopy. But then mentioned me trying the gluten free diet. Recent lab work for IBD Panel, C Reactive Protein, etc. have yet to come in.
Any thoughts?
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#13 ravenwoodglass

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Posted 02 May 2012 - 12:12 PM

Do as the doctor suggested and give the diet a good strict try. You don't have to wait on your results. And if your Mom was told to go gluten free but didn't she should join you on the trial.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 TGL

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Posted 02 May 2012 - 01:08 PM

I agree. I'm going to try out the diet and see what happens.
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