Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

aeryn

Upper Endoscopy Results

Recommended Posts

So a quick recap of what's been going on:

I went to my primary care physician about abdominal bloating and pain, excessive gas, and nausea when eating. (There are a lot more symptoms, but just trying to keep this brief.) She tested me for H. Pylori (negative) and Celiac (negative.) She prescribed taking an acid reducer for a month, and then to meet with her again after that. I took it for less than 2 weeks before I had to stop - it was making the nausea worse, and it was 24/7 instead of just when eating. I met the doctor again and she tested my thyroid (normal) and sent me off to see a gastroenterologist. I met with the gastroenterologist who told me that gas and bloating and very difficult to diagnose and that he didn't think there was really a problem. He said that he didn't feel Celiac is the issue since the blood test is "extremely accurate." He prescribed Levsin, recommended I see a gynecologist (to be tested for endometriosis) and only at my insistence scheduled an upper endoscopy.

I had the EGD last night, and he found gastritis at the entrance to the small intestine. He biopsied it, but it'll be a week before I get those results. His comments after the procedure were basically that I should just suck it up and live with it.

At this point I feel a bit jerked around by doctors, and am thinking I should just try the gluten free diet and see if it helps at all. You guys have more experience with this, what do you think?

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


suck it up and live with it???? OY VEY.. these docs ...good LORD...

1st, if you want to post your blood test results- we would all help explain if they're incomplete or not...

also- were you ingesting enough gluten before testing?

unless you have an ulcer- antacids can do more harm than good. it messes up your digestion in your stomach- and then your small intestine gets this huge load of undigested foods. plus if you're stomach doesnt work right, then your pancreas & liver wont get the right signals... all this can make you nauseaus.

there's more possibilities too that these docs never consider... like SIBO, or parasites... or other malabsorption issues.

you do not have to "suck it up and live with it"


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

Ugh. Bloating and gas is usually celiac, lactose intolerance, or fructose malabsorption. You can post your celiac panel if you like, including total IgA. If you've had all the testing done, yes it's time to start working on your diet.

Share this post


Link to post
Share on other sites

I do have lactose intolerance, but I'm careful about what I eat for dairy products.

There really wasn't much for blood test results, but this is what there was (I requested copies of the results):

H Pylori IGG NEGATIVE

H Pylori IGA NEGATIVE

H Pylori IGM EQUIVOCAL

tTG AB IGA <3 U/mL Value explanation: <5 Negative 5-8 Equivocal >8 Positive

TSH 1.06 Normal range 0.35 - 4.95

Share this post


Link to post
Share on other sites

So no total IgA to know whether the tTG IgA was valid? Bummer. People who are IgA deficient need tTG IgG to diagnose celiac. Well, maybe there will be info in the biopsy. If you're not concerned about the blood work you can start the diet, but it would be nice to have all the rest of the tests run.

You're either going to want gluten-free, low FODMAP, or both. This tells a little about low FODMAP.

http://www.glam.com/blogs/healthhypecom/nutrition_guide_for_fructose_malabsorption

Share this post


Link to post
Share on other sites

I'm concerned about all of it, I just don't know what to do really. My PCP and the gastro obviously don't think there's an issue, and I don't know if I should insist on things from them that they don't want to do, or go find someone else who will do these tests. Then again, if I go shopping around and/or insisting on these tests, how is that going to affect my insurance? Will it cover it or not? Do I stop with the tests and go gluten free and see if it helps, and if so, gluten again and get more tests? Or just stay gluten free? But then will I be tempted to cheat, not having the tests to force me in line?

In case you can't tell, I overthink things a lot.

Share this post


Link to post
Share on other sites

OK. You've had the biopsy so that's done. What you might do if it's negative is go back to your PCP, and make sure there was a total IgA. If not, tell her that you still feel bad, you know she doesn't think you have celiac but could she please humor you with total IgA and tTG IgG to be sure the celiac panel was right?

Then go try the diet. ;)

Share this post


Link to post
Share on other sites

Hi,

I have suffered bouts of severe gastritis, I mean so severe that it radiates to my back, I lose my appetite, wish I could have a stomach transplant kind of pain. gluten-free diet definitely helped, but I went through another severe bout a few months back, had an allergy panel ran, discoverd I was highly allergic to eggs and had to cut them out as well. Also turned out that I couldn't tolerate the psyllium husks I added to my smoothie each day and once I stop eating that, it cleared up and I'm as good as new.

My advice: Kick the antiacids. They only make your digestive track worse. When I need to calm my stomach I've found these things work much better: black licorice root by enzymatic (I believe that the name) was my savior during the tough times. Drinking aloe vera (available at health food stores) tastes decent and puts out the internal burn. Manuka honey works miracles...take a tablespoon every morning. L-glutamine powder helps repairs the damage tissue.

Here are two other things to consider: hpylori is sometimes hard to detect. My blood tests came back negative but stool samples should positive. Either way, I wasn't about to go under the crazy antibiotic regime required to get rid of it, so I started eating brocolli sprouts and taking oil of oregano, lots of probiotics and digestive enzymes. All help greatly. Also, when times were at there worse, I slept on a wedge pillow.

Sorry to ramble, but I can't suggest highly enough you try to figure out all the foods you are having issues with. You may consider staying on a very bland diet of rice, chicken and veggies for a week or so and then slowly adding food back in. I can tell immediately when I've eaten something I'm intolerant or allergic to - the gastritis fires right back up.

I literally feel your pain. Good luck and let me know if you need any additional informaiton.

P.S. Follow the advice above and get your IGAs tested. You should definitely finalize those tests.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

Share this post


Link to post
Share on other sites

I'm not on any antacids currently. I'm keeping a food diary, though right now it's just serving to remind me how much less I'm eating compared to what I used to be able to eat. I'll wait for the biopsy results and then take it from there. I'll keep the bland diet in mind :)

Share this post


Link to post
Share on other sites

I'm not on any antacids currently. I'm keeping a food diary, though right now it's just serving to remind me how much less I'm eating compared to what I used to be able to eat. I'll wait for the biopsy results and then take it from there. I'll keep the bland diet in mind :)

You can go ahead and start on the gluten-free diet now that the biopsy is done. You don't need to wait for the results. Do keep in mind that there are false negative results with the biopsy as well as the blood tests so a trial of the diet is needed no matter what the results.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

Share this post


Link to post
Share on other sites

YES!!! Broccoli Sprouts prevent the H.Pylori from reproducing and setting up camp B)


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

You can go ahead and start on the gluten-free diet now that the biopsy is done. You don't need to wait for the results. Do keep in mind that there are false negative results with the biopsy as well as the blood tests so a trial of the diet is needed no matter what the results.

Well, as long as you're not wanting any other tests. If you decide to go back and ask about the total IgA and anti-tTG IgG, you still need to be eating gluten.

And yes, you absolutely want to try the diet. Raven is so right about false negatives.

Share this post


Link to post
Share on other sites

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Share this post


Link to post
Share on other sites

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Sheesh. Well, good luck with the diet. I hope it helps.

Share this post


Link to post
Share on other sites

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

OMG! what a waste of time & money & endoscopy!!!!! geez ... no wonder our medical system doesnt work and costs so much... :angry: ridiculous


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites
I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Oh this makes my blood boil! I am not sure but if he took biopsies for H Pylori then could he not go back and test those same biopsies for Celiac? I would demand he does because that is what YOU thought you were going in to be tested for. If he refuses maybe you should refuse to pay him. I am not sure this is great advice but it sure would be nice to start making doctors responsible for their actions and incompetence.

Maybe write to the doctors at Columbia U Hospital and see if they would check the biopsies for a second opinion. If your doc knew this was going to happen, he might just change his mind on checking for Celiac.


C.D.

Mom-Gold Star Celiac dx June 2005 with many neurological complications DQ2/DQ1, 0603, dx with DH Oct 2005

Dad-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2/DQ1, 0609

Son-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2

Daughter1-Celiac Disease positive tTG IgA DQ2

Daughter2-Celiac Disease-Mild Gluten Challenge caused severe anemia and major drop in Ferritin, Iron, and saturation levels with a major increase in TIBC, DQ2/DQ1, 0609 Dx Graves Disease

I also believe doctors need to make sure all vitamin levels are at the mid to high range in sick patients not just Celiacs. Mega doses of Vitamin D3 has helped my neurological problems.

Share this post


Link to post
Share on other sites