Is This Bad?

[mark5767]

Here are the results from my labs, confirmed with a doctor visit on 3/13/2012:

Desc: Immunoglobulin A, Qn, Serum

Result: 174 mg/dL

Range: 70-400 mg/dL

Flag: None

Desc: t-Transglutaminase (tTG) lgA

Result: 78 U/ml

Range: 0-3 U/ml

Flag: H

t-Transglutaminase (tTG) lgA:

Negative: 0-3

Weak positive: 4-10

Positive: >10

Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

My doctor said the pictures from my endoscopy indicated the villi were pretty much all atrophied or flattened, about as gone as they can be.

Anyway, my main symptom is pretty severe right side abdominal pain starting around Christmas 2011. The pain cycles up and down over 5-10 day periods. When it gets bad I belch a lot, which temporarily relieves the pain, but it takes days to mitigate and never goes away altogether.

I started taking omeprazole (Prilosec) in late January which seemed to help somewhat and I am still taking this every day. When I have tried to stop taking it a couple of times the pain seemed to get worse.

At the moment I am feeling a little better, but last week was pretty bad and I have been on a (as far as I know) strict gluten-free diet since March 13.

A few things I am currently trying or wondering about:

[*]When the pain gets bad I take a 500mg Tylenol. I

[IrishHeart]

Welcome to the fold.

As for Prilosec and other GERD medicines, I stopped taking all of those things after I went gluten-free because the symptoms I had for 12 years stopped. I did not wean off and that may have been a mistake. But I have no more GERD or "IBS" --no abdominal pain, or stomach burning or pain or any cramping--and that's the great news!

MY GI tract was in flames--from mouth to you know where. It was awful.

In time, you will (hopefully) no longer need them either.

But until then, no point in being in pain. You can always reduce them in the coming weeks. Healing is a process.

Tylenol will not help gut pain, hon.

If you have joint pain, then use it.

Everyone is different, and you may not need to give up dairy, but I would at least try it and see if that gut pain resolves quicker.

Giving up dairy is not a big deal. Use So Delicious Coconut milk, creamers, ice cream and Earth Balance spread.

It's just a temporary lactose intolerance in the majority of Celiacs. Mine took longer to resolve, but that's my experience--and some never can tolerate it again. I can do small amounts of cheese now and be fine. Yaay for Pizza!

Here is all my best "Newbie" advice about getting started all in one giant pile Hope it helps.

Best wishes to you,

IH

[mark5767]

Thanks IH. So I guess omeprazale IS my "painkiller" for the time being. Hmmm.

Thankfully I have not felt compelled to take Tylenol too often. That a little surprising it has no benefit at all for gut pain, it would be nice if there were some OTC med that would help! I have found that rest helps mitigate the pain so I have that going for me, although not too much else to show for it except for extra time on the couch.

[Skylark]

• 
  
  
• When the pain gets bad I take a 500mg Tylenol. I’m not sure if this helps too much, but at least it may have some placebo effect. Ibuprofen does not seem to be good option for this type of pain due to potential additional digestive irritation. Are there any other ideas on painkillers out there or is it best to just live the gut pain when it comes?
  
• I am trying as of two days ago to go dairy free. I guess this means avoiding both lactose and casein? I would very much like to NOT eliminate both of these, but if helps my villi heal so be it.
  
• I gather omeprazale is something I need to wean myself off of sooner rather than later. My current thinking is if I can get two weeks of feeling better under my belt I will scale back gradually and see what happens. At this point I am pretty reluctant to go cold turkey based on prior experience.
  

Tylenol is fine. If the pain is from gas, eliminating lactose would be good, or you could try low-FODMAP. I find Pepto-bismol helpful sometimes but for me it's more stomachache/nausea.

It's best to get off dairy completely to see if it's going to help. How would you pick up a casein sensitivity if you only eliminate lactose? You can challenge casein if your symptoms improve by trying some Lactaid milk.

You might try a digestive enzyme supplement and see if it gets you any relief. If the omeprazole has your acid too suppressed, enzyme production isn't triggered very well and you end up with a lot of trouble digesting your food. Source Naturals makes a nice one but there are plenty of others on the market.

[Darn210]

You might try a digestive enzyme supplement and see if it gets you any relief.

Digestive enzymes seem to help my daughter more than anything else. She uses American Health Chewable Super Papaya Enzyme Plus.

For gas I like Simethicone (I'm using a store brand). I'm not a Celiac but every so often, I'll have a gas issue where it feels like it's in my gut expanding but not moving on and the simethicone helps.

[mark5767]

Thanks for your responses!

I am currently taking a digestive probiotic by trunature which I assume is a digestive enzyme as has been suggested. I think perhaps lactose could be causing a gas issue leading to pain. My doctor seemed to not have anything to say about this except I must be swallowing air that makes me burp? I respectfully disagree because the pain just appears with no apparent correlation to any possible "air swallowing."

So I think it's defintitely worth a shot eliminating lactose. If the villi are totally flat and not doing their job then somehow improperly digested lactose may be causing a problem. I don't recall my doctor saying anything about avoiding dairy so my diet if anything became more reliant on dairy since I was eliminating gluten containing foods... I ended up eating a lot of cheese, yogurt, ice cream, etc.

Based on IH's recommendations I picked up some coconut versions of milk, creamer and ice cream. I had no clue such things existed, but they are actually pretty good! Thanks again for your comments!

[Skylark]

Lactose is made at the tips of your villi. That may well be your issue.

Probiotics and enzymes are not the same thing and I don't think I've ever seen a combination product. The probiotic provides helpful bacteria. You take enzymes with your food and they help supplement your natural digestive enzymes when your digestive system isn't working quite as it should.

[pricklypear1971]

Lactose is made at the tips of your villi. That may well be your issue.

Probiotics and enzymes are not the same thing and I don't think I've ever seen a combination product. The probiotic provides helpful bacteria. You take enzymes with your food and they help supplement your natural digestive enzymes when your digestive system isn't working quite as it should.

Enzymedica makes a combo enzyme/probiotic. It is gluten-free. Open Original Shared Link

[Darn210]

Adding additional arguments for a good digestive enzyme:

I just want to point out that the villi produce more than just lactase although that's the one that gets all the publicity. My daughter's biopsy was officially "normal" as far as visual damage was concerned. However, she was found to have a generalized disaccharidases deficiency. They tested 5 different enzymes produced by the villi and she was deficient in all of them.

Open Original Shared Link

disaccharidase

any of a group of enzymes which are components of the brush border of the intestinal epithelium and which hydrolyze disaccharides to monosaccharides. They include lactase, maltase, sucrase and galactosidase. Enteric infections may cause a temporary deficiency of lactase leading to the development of an osmotic-type diarrhea. All disaccharidases are not present immediately following birth and feeding sucrose to young calves will result in diarrhea.

[Skylark]

Great info! This is the whole reason behind the Specific Carbohydrate Diet. It limits starch (which breaks down into short-chain saccharides), lactose, sucrose, and maltose and provides carbs from easily-absorbed fructose instead. Which is fine unless you're malabsorbing fructose...

[mark5767]

Mercy, and to think I did not know there was such a thing as a digestive enzyme. I clearly have a digestive problem that needs help in some form, I will give the enzymes a try in addition to the probiotic. Hopefully some combination of this with avoiding dairy will help my system improve. Poor little villi.

The low FODMAP diet appears a bit involved to me at first glance... might need some time to digest that one!

[Roda]

You don't want to stop taking a PPI cold turkey. You need to gradually wean yourself off of it or you will experience acid rebound. I've read several sources that recommend gradually lowering the dose and if need be use an H2 blocker to help with symptoms. If all goes well then you can probably get off the H2 blockers as well.

[Skylark]

Mercy, and to think I did not know there was such a thing as a digestive enzyme. I clearly have a digestive problem that needs help in some form, I will give the enzymes a try in addition to the probiotic. Hopefully some combination of this with avoiding dairy will help my system improve. Poor little villi.

The low FODMAP diet appears a bit involved to me at first glance... might need some time to digest that one!

Enzymes are what your body uses to break down food. They are made in your saliva, your pancreas, your stomach, and your intestines. All the damage and inflammation in celiac tends to make us produce fewer enzymes than normal.

I hope it helps! Low FODMAP is sort of a pain and this would be an easier fix if it works for you.