Celiac Disease - Pre-Diagnosis, Testing & Symptoms

Barium For Gi Testing Gluten Free?

Fri, 20 Nov 2009 17:34:15 -0800

Today i had a GI small bowell study...lots of abdominal pain tonight..Could it be the barium meal....anyone know anythong about this......
just wondering.................DIva

Malabsorbtion Issues

Fri, 20 Nov 2009 14:13:45 -0800

I was tested for Celiac 3 years ago due to anemia issues and a strong family history of Celiac. I was told I did not have Celiac. I still have anemia, which my new Dr. has determined is due to malabsorbtion syndrome. He says my small intestines are not absorbing the vitamins as they should. I take a handful of vitamin supplements every day and am still deficient in vit D, Iron, folic acid, etc... He is retesting me for Celiac.
Does anyone know of a multi vitamin patch. I figure, that if I by pass my intestines through a patch I might be able to retain some of these vitamins and feel better. I take a sublingual b-12 and am not deficient in it.
I was told 2 weeks ago that I have Lupus, to add to my problems.
What is the difference between Malabsorbtion Syndrome and Celiac? Does malaborbtion syndrome benefit from a gluten fee diet?
thanks

Igg Testing

Fri, 20 Nov 2009 11:55:32 -0800

Okay here's the situation. I'm sure I have gluten ataxia, have the genes, been gluten free for a year and suddenly having attacks again (I think from yeast overgrowth), but I was on the National Ataxia Foundation site and they listed the blood test for this as: Only at "Quest" Labs, Gliadin Antibody Panel #3517N (NON Deamidated). The only one specifically for gluten ataxias. I emailed them as asked if I had to be eating gluten to have the antibodies show up. The Manager of Client Services, Robert M. Panarelli email back saying I did not have to eating gluten, the antibodies would show up no matter what and if I were in an attack or just coming out of one, they would be even higher.
So, I went on their test lists and found the test 3517N and under Clinical Use it states: "The antibody is Undetectable when patients with hypersensitivity are placed on gluten-free diets." I wrote back to Quest about this and the latest reply is: discuss this with your doctor and they will know what to order for tests. The problem is, I do not have, nor can find a doctor in my area (Maine) that knows a darned thing about gluten ataxia, just Celiac itself. (I do not have the digestive type)
I had already found information about this before and was told to have the "Quest" lab test#8889X. I had it and it came back negative. I was 100% gluten free at the time of this test recently.
The national Ataxia Foundation states that most labs do the "Deamidated" form of test, not the "NON-Deamidated" which means it will show "Celiac" and not Gluten Ataxia. They say Quest is the only one that does NON-Deamitdated.
I am soooo confused and can not seem to get an answer. My PA is waiting for Quest to investigate whether or not the test 8889X was Deamidated or NON-Deamidated. But it appears I may have had the wrong one anyway. In the mean time I am also being tested for heavy metals and Lyme's just to rule them out. Can any one help me with this???? Do I have to be eating gluten, and are these the right tests? Thanks, Amber

Where Do I Start

Fri, 20 Nov 2009 11:51:39 -0800

I am a 45 male who has always had some mild constipation but lately it has been out of control. I have a dad and a nephew with celiac but have no idea if that is what I have. I have gone 80-90% gluten free for a week and the cramps are gone but the constipation is still there. Not sure what to eat or do right now,
my urine is clear and the cat scan revealed nothing.
Dan

Are My Symptoms Likely Celiac?

Fri, 20 Nov 2009 11:49:31 -0800

Hi everyone, I'm new to the site. 18 yr old female
I've been having medical problems since last January. Initially i had a viral infection. i was very sick for 2 months and was put on Prednisone and started to feel better. I felt better for about a month and went back to my normal, busy and energetic lifestyle. All of a sudden, I relapsed and have been feeling awful ever since. I am wondering if I developed Celiac after the stresses of my bad viral infection.

My symptoms are:

-FATIGUE!
-muscle soreness/body aches
-sharp, constant pain in lower left pelvis and intermittent pain/burning sensation throughout midsection esp. under left ribs
-breathlessness with exertion
-hair loss (maybe due to stress)
-nausea with some meals
-sharp left sided chest pain
-diarrhea that is light tan/occasional green foul smelling stools
-always have to wake up early because of urge to go
-huge appetite despite eating a lot!
-gas

I have ruled out pulmonary and Cardiac issues and am now working with a GI doc. my bloodwork was negative for celiac but my aunt has is, which makes is relatively likely that I may have developed it. I have never been able to gain weight and have always been nauseas with some meals, I am wondering if I have had it all along and then it got a lot more severe. I have not had an endoscopy or colonoscopy yet, the doc said she doesn't think I have colitis-but the location of my lower left pelvic pain has me worried, is this pain location common among celiacs? I am going to a homeopathic doctor after thanksgiving and am desperate for a diagnosis, any advice/personal experience is greatly appreciated!!!

Total Serum Iga

Thu, 19 Nov 2009 13:13:20 -0800

I was just wondering if anyone could tell me what the Total Serum IgA is. I had my blood test and that was the only one that was high.

Thanks

Some Inconsistencies In What Dr.s Are Saying

Wed, 18 Nov 2009 14:42:32 -0800

BACKGROUND: Since my 15 yr. had infectious EBV (Epstein Barr) three years ago, he's really never been the same. PERPETUALLY NAUSEOUS, CRAPPY IMMUNE SYSTEM... He was diagnosed with type 1 diabetes a 1.5 years ago.

At our first appt. a few weeks ago, (with this dr.) he said that he had negative tests for Celiac from previous dr. but they arent always accurate (so didn't test again). In fact, he said the only "sure fire" way to know is how one responds to the diet. I went ahead and put him on gluten-free diet while waiting for the Vit. D tests (came up low) in the meantime, and within a few days he went from being gray, in bed, nauseous, sore, to his normal self again.

When he called with results, he said the Celiac test that was previously done was 95% accurate and Celiac can probably be ruled out. He put him on Vit. D supplements (50,000) and said that he'd like to test for "sprue". I thought that was the same thing? He also said his hemoglobin was a little high. Anyone have thoughts?

So now these are the tests he's ordered (they faxed me a copy and some of it's hand written...hard to read):
Quantitative immunoglobulin
tissue transglutaminase
endomysial auto-antibodies
fasting a.m. cortisol
lyme
ACTH stimulation test (thsi one says three hours/lavendar/SEP Freeze)...huh?
PPD
PTH
Renin/Aldost...??
DHEA-s
HIV--been done when he had EBV, (negative)
SPEP
B-12/Folate
Ferritin

He asked if I wanted him to order an endoscopy, but I really don't care about an official diagnosis of celiac if it means subjecting him to more.

In summary, are the things he said that I find inconcistent:
1. at the 1st appt. he said the "Celiac test" that the ped. did (only an IgG) wasn't always accurate
2. Few days later when he called for the "non-celiac" results he said the previous tests from ped. done for Celiac were "95% accurate" and that his improved health on the diet could be the "placebo effect". but, he reported a Vit. D def and hemoglobin was high (not terribly, but risen to 16.6 since last test which was 15)
3. He said the testing (to be done next week) shouldn't be influenced at all by the fact that he's already been gluten-free for 3 weeks. much of what I'm reading says different. If it meant having to put him back on gluten to find out, I won't do it...not worth it.

I dug up an old report from the original "celiac test" thsi is what it says:

tissue transglutiminase AB IGA .03 [0.0-3.9] U/mL
negative (less than) 4.0
equivocal 4.0-10.0
positive (greater than) 10
Comment: tTG antibody, especially Iga, is sensitive and specific for untreated Celiac Disease. levels can decrease significantly in response to a gluten free diet. The IgG assay is used mainly to detect celiac patients who are IgA deficient."

What does this mean?

Latent Celiac Disease

Wed, 18 Nov 2009 14:09:26 -0800

Hi Everybody! I just had a intestinal biopsy which showed "latent celiac disease". The doctor ordered more blood work to test for the genetic marker and nutritional deficiences before she recommends a gluten free diet. I'm confused. If the genetic test is positive and there are no nutritional deficiences, should i go gluten free anyway? I guess gluten can't be good for you if you have the potential to become celiac. The doc said the villi looked flattened when examined, but the biopsy said latent. Has anyone else had this diagnosis?

At The Brink Of An Autoimmune Cliff?

Wed, 18 Nov 2009 10:03:33 -0800

My 14 yr. old daughter complained of "tummy hurt" from age 4. She was diagnosed with GERD at age 8. She had an endoscopy 2 years ago that showed normal villi but demonstrated "mild reactive gastropathy". A diagnosis of irritable bowel was proposed. She started having episodes of Raynaud's at age 12. Six months ago she developed scalp psoriasis. She has some issues with brain fogginess, occasional tingling in extremities, and a few more aches and pains than a normal teenager. To confuse the issue, she is well muscled despite a very lean build and appears the picture of vibrant health. She was tested for celiac by Prometheus a couple months ago and here are the results:

Anti-Gliadin IgG = 3.9; normal = <10
Anti-Gliadin IgA = <1.2; normal = <5
Anti TTG IgA = <1.2; normal = <4
Anti EMA IgA = Negative; normal = Negative
Total Serum IgA = 42; normal = 44-144

HLA allelic variant associated with celiac disease detected: DQ8 heterozygous; 2X risk: risk moderate

Although she was eating gluten at the time of this test, her intake had already been somewhat reduced on her own to avoid foods that upset her stomach. Her pediatrician approved going gluten free. GI docs were unhelpful. She is having a hard time staying consistently gluten free and cheats with pizza & hamburgers a couple times a week. She admits to feeling better without gluten. How hard should I press her to be strict about the diet without an official diagnosis? I feel she is at the brink of an autoimmune cliff.

I'm New! Can Anyone Help?

Tue, 17 Nov 2009 11:25:44 -0800

I'm new to the forum and am not sure if I posted my original question correctly. I have had negative blood tests but came back with positive for DQ2 and a subset of that gene putting me in a moderate risk category since I have many symptoms associated with celiac such as: 3-8 loose stools per day, vitamin b12 and d deficiencies, bloating, gas, stomach pain, severe osteopenia in my back(I just turned 40), inflammation in my entire digestive tract from my esophagus all the way down. I had an upper endoscopy which only showed inflammation(esophagitis, gastritis and duodenitis) and a colonoscopy that also just showed inflammation. I have peripheral neuropathy in my right hand and am constantly fatigued and have joint pain. I am scheduled for a 2nd upper endoscopy in 2 weeks because my new gastroenterologist said that there were no biopsises taken from the first part of the duodenum only the 2nd. The testing has been going on for 18 months and my symptoms have been around for about 7 years. Can you have early stage celiac with just inflammation and negative bloodwork?

How Long Does It Take..

Tue, 17 Nov 2009 09:15:50 -0800

November 9th I got a call from the doctor telling me I have tested positive for Celiac disease. From that point I have been eating a strick wheat free diet with no dairy because I am lactose intolerant.

It has been 6 days of no gluten but I am still having stomach pains. Some days it dosent hurt as much, some days it hurts for hours. The best way to describe the pain is like someone is squeezing my stomach.

How long until I can experience some relief? Is this common?

Blood Tests Alone Over A Biopsy

Tue, 17 Nov 2009 08:59:37 -0800

I want to see if any one here can help me. I was diagnosed last November by a positive biopsy with the upper endoscopy. Then the blood work followed.

My sister has been having some bad health issues since her husband of 40 years died last year and I suggested she get a celiac panel run. Her results are: Trans glu was 28.6 with <4 as
normal. My Endomysial AB was positive when it should be negative.

My question is this? Does that mean she has Celiac or she COULD have Celiac disease.

Thank you for your help

Test Results For Celiac

Mon, 16 Nov 2009 19:30:24 -0800

Hi, I'm new to this forum. I had a blood test (TISSUE TRANSGLUTAMINASE IGA) and my results were 1.62<0.90- Index. The doctrs said I had Celiac, so they did a biopsy and it showed no damage. Now they say I am NOT celiac. I have been on a gluten free diet for a month. I had the blood test on gluten, the biopsy being gluten free for a month. So any suggestions where I go now? I have all the typical symptoms, bloating all the time, constapation, pain.

Thank you for any suggestions you might have for me.

Diana

Help! Confused-could It Be Celiac?

Mon, 16 Nov 2009 10:56:23 -0800

I have been trying for the past 18 months to figure out what has caused all of my gastrointestinal issues(diarrhea, stomach pain and gurlging, and bloating, not to mention others) as well as my joint pains and fatigue for the past 7 years. The testing I have done so far has shown vitamin b12 and d deficiencies, delayed small bowel transit time, esophagitis, gastritis, duodenintis, severe osteopenia in my spine(I just turned 40) and low stool pH. The blood tests and biopsies have been negative for celiac but the genetic testing came back positive for HLA-DQ2 and a subset of that gene. I have finally found a gastroenterologist(he's my 3rd) who has informed me that I need to have a 2nd upper endoscopy done by him so that he can see for himself what is going on. He also stated that I may be suffering from an early mild "under the radar" case of celiac. He stated that duodenitis to one doctor may very well be celiac to another and that my first gastroenterologist neglected to take biospies from the duodenal bulb where inflammation was noted. Has anyone out there been through circumstances like these? I am finally happy with the doctor I have now and would just like some input from other people who have gone through similar situations. Thank you for your time in reading this post.

Help Please

Mon, 16 Nov 2009 08:10:31 -0800

OK, here's what is going on. My 15 year old tested weak positive a few years ago. She is very, very rebellious and suffers from ADD, ODD, and Depression. Needless to say, getting her to give up any of her favorite foods was impossible. In fact, it made her want them more. We gave up, thinking that a weak pos with a simple message from the nurse saying "it might be a good idea to follow a gluten free diet" was not enough to make us force the issue.

Fast forward to last week. DD is finally ready to take some things into her own hands in terms of improving her mood and behavior....and she is now homeschooling. She has agreed to try a gluten free diet in the hopes of improving her mood and behavior.

I called the doctor whom we saw 3 years ago and asked for test results. The only number they would give me over the phone was a 20 units for antibodies. In reading online, I see that a 20 is the highest number under the negative range.

So, any advice for tomorrow? What to ask the doctor? Additional testing that should be done?