new here -- questions about food sensitivity testing, acid

[mzh]

Hello all,

I recently joined the forum; this is my first post. :) I was dxd with MC in 2005 after years of bad D. I still have it if I don't take Entocort. (I can get by with one a day or one even every 3 or 4 days after a loading dose.) The GI doc insists I have GERD even though I don't feel it; he found focal Barrett's at the LES and wants me on omeprazole for at least a year. I do feel esophageal spasms and dismotility up high -- it was confirmed with a barium study -- but I have never experienced actual reflux. He doesn't seem to accept that. I suspect low acid -- I feel good when I take Betaine HCl -- but he doesn't believe in it. I do think he'll do a Heidelberg Capsule test if I push for it.

I'm seeing the GI doc today and am going to suggest food sensitivity testing too. Is Enterolab the most used? I know; I should have asked this question earlier but I just figured out what to ask!

Marcia in SC
Gluten-sensitive, self-tested

[Zizzle]

Welcome Marcia!
Yes, Enterolab is the most widely used lab among this group to test for food sensitivities, but many docs will not order the testing for you. Enterolab is often shunned by the medical community because they lack peer-reviewed studies proving the validity of their work. The experiences here demonstrate how valuable Enterolab is. Most MCers are also casein/dairy intolerant, and many are soy intolerant. You may find that by removing one or both from your diet you can wean yourself off Entocort. I never used Entocort, I manage my LC with diet alone. Acid reducers (PPIs) are known to cause or aggravate MC, so you will need to be careful. I have read of others here using apple cider vinegar for GERD with success. It works by stimulating the LES to stay closed.

You mention you self-diagnosed gluten intolerance. Were you ever formally tested for celiac disease? I guess you must have had an upper endoscopy with biopsies... Enterlob also offers inexpensive cheek swab gene testing for HLA DQ genes (DQ2 and 8 are the biggies for celiac disease). Maybe you can convince your GI to order the blood tests instead? It's an extra piece if information and will help you know if you are at risk for full blown celiac down the road.

[mzh]

Thanks for the warm welcome, Adele!

I really cut short my background b/c I've been tested for almost everything and figured it would take up way too much space. I've had both the gluten and lactose sensitivity tests and they came out normal but my bowels are much better on GF (not perfect by any means!) I had an endoscopy and a colonoscopy on 8/9/10 and had biospsies taken for celiac and again I was normal. (I had resumed eating gluten about 2-3 weeks before the tests per the GI's PA instructions before the tests.

The LES showed focal Barrett's. I had similar results from an endoscopy in 05. I was put on Aciphex and it made me very ill. The omeprazole isn't, for some reason. In both 05 and 10 is was also dxd with the MC. I had a barium swallow this fall and it clearly showed the upper esophageal dismotility. The barium (and pills and food) take forever to get past that spot. Once it does my motility is fast! Throw in spams at the same spot and there is a big problem there at times!

I'm currently not taking Entocort but am doing a trial of digestive enzymes. Tried Zenpep (pork) from the GI doc and Digest Assure, a high-quality over the counter Procaps plant enzyme product. I only have the D a couple times a day now but am ready to throw in the towel and go back to Entocort. I'd rather do the food testing and some real acid testing first.

Thanks for the quick response!

How do I get an Enterolab test done if the doc won't order it?

[Zizzle]

The lactose sensitivity test only rules out sensitivity to the sugar in milk, not the protein, casein. Most people with gut inflammation have lactose intolerance too, so it surprises me that came back negative. But the casein protein is the bigger offender, and can be hidden in many processed foods, not just dairy products. You can order Enterolab testing online @ Enterolab.com without doctor's orders, but I'm not sure if your insurance will cover it. You may want to ask the folks at Enterolab if an order will help with insurance reimbursement. I had flex-spending at work that paid for mine.

If you aren't able to afford the testing, at least try an elimination diet, removing soy and dairy from your diet for at least 10 days. If the D improves, then add one in to see if things get worse.

[mzh]

I was wondering about casein too. I can afford to pay for the test if insurance won't.

[mbeezie]

Marcia,

Another food sensitivity test that is sometimes used is called Mediator Release Testing. More and more physicians are starting to use this test and there may be some insurance coverage depending on your particular plan. A few of here have used it and found it beneficial, especially when symptoms persisted even after using Enterolab. It tests for far more foods (150) than Enterolab and covers a wider range of symptoms. www.nowleap.com

Mary Beth

[mzh]

Thank you, Mary Beth. I'm just about to leave for the doc, but I did look at the test. It looks great!

[tex]

Hi Marcia,

Welcome aboard. I agree with you that you are much more likely to be low on stomach acid than to produce too much of it. The drug companies have most doctors trained to automatically assume that any symptoms of gastric reflux are due to excess acid. That's simply not true. In most cases, insufficient acid is the problem, because the LES will not reliably remain closed, if the acidity on the stomach side is too low, and in reality, very, very few people actually produce too much gastric acid. Many are deficient, however.

In general, the lower the pH of the stomach, (IOW, the more concentrated the gastric acid), the more tightly the LES clamps shut, and the more reliably it remains closed. The symptoms of insufficient acid are exactly the same as the symptoms of too much acid, so yhour doctor is simply guessing, without any test results to go by. If your digestion is improved with Betaine HCL, then clearly, your doctor is wrong - you are not producing enough gastric acid, and that insufficiency is very likely the cause of your Barrett's pathogenesis.

We have one or two other members with Barrett's markers.

Again, welcome aboard, and please feel free to ask anything. I hope your appointment was productive.

Tex (Wayne)

[mzh]

Hi Tex, thanks for the welcome.

Well, I'm back from the doc's visit. He really doesn't think I have low acid as the endoscopy showed a perfectly normal stomach lining. He said there would be gastric atrophy if I was achlorhydric. The bothersome part is that he didn't think there was a middle ground -- hypochlorhydria. But logically (to me anyway) the amount of acid doesn't go from normal to zero without a gradual transition. I showed him the Betaine HCl and he was totally puzzled by it and also by the usual test Betaine HCl challenge. We talked about a few other things and at the end I was so confused I didn't even ask about food sensitivity testing. I guess I'm on my own now. Oh, he said if I wanted to do the Bet HCl challenge that I should be off the omeprazole for 2 months before trying it. Sigh.

I do have a question: is there any recent study on low acid put out by MDs or researchers? The only low acid material I've found has been by NDs and nutritionists and not GI docs. (No surprise, eh? The advent of PPIs seem to have stopped all other studies!)

I think my doc is good but he is a strictly by the book guy. He's board certified and has a large practice and is considered good, even by nurses who go to him.

[MBombardier]

Hi Marcia! Welcome!! I also have GERD. I took OTC omeprazole, which one is supposed to do for two weeks and then not again for four months. The first time, this worked. The second time, the relief only lasted for a couple of weeks. I decided there was something wrong with this picture. As Tex says, it is apparent that I have too little acid instead of too much.

Currently, I grab Tums when I don't think I have time (or when I just can't face the taste) to do apple cider vinegar. Of course, this is counter-productive; however, the ACV really works.

[tex]

The advent of PPIs seem to have stopped all other studies!

No surprises there, since the pharmaceutical companies pay for virtually all of the research these days. They obviously are not likely to fund research that might discourage the use of drugs. The sad part is, when no credible research exists, most doctors simply assume, (by default), that the opposite is true. IOW, if no research exists to show that low gastric acid is a common cause of acid reflux, then doctors automatically assume that low stomach acid is never a cause of acid reflux. The drug companies have it made, because doctors are so easily fooled into making incorrect assumptions.

Another prime example of this is non-celiac gluten-sensitivity, (NCGS). Since no one has even attempted to prove that it exists, most doctors incorrectly assume that it does not exist, and they steadfastly hold to this mistaken assumption, as if it were a proven fact. Within a few years, there will be drugs available on a prescription basis, to treat gluten-sensitivity. What do you want to bet that soon after that historic date, some researcher, (funded by Big Pharma), will conclusively prove that NCGS does indeed exist, so that doctors will then be legally eligible to prescribe those pills not only to the relatively small celiac cohort, but to a group of individuals 100 times larger, who do not have celiac disease, but who are still gluten-sensitive? Mark my word.

Tex

[Zizzle]

Tex,
I'll wager big bucks on that prediction!!

[mzh]

To add to my issues, I have sleep apnea. Since starting the omeprazole in August I seem to be having more apneas and upper esophageal problems. This occurred to me just now after last night having one or more apneas. Ugh!

I did do elimination testing back in 02 but didn't focus on soy. Eliminating dairy didn't help, unfortunately.


I'm really looking forward to reading all the forums!

[tex]

For those of us who have, (or are candidates for developing), MC, PPIs are not our friend, unfortunately.

Tex

[MBombardier]

I have sleep apnea, too. It needs to be higher on my radar because sleep apnea in women is a strong indicator for heart attack. I have heart trouble in my family and I am getting to be of a certain age... But I have made my autoimmune issues (especially hypothyroidism and CC) the greater priority right now. In the meantime, I try not to fall asleep on the airplane.