Lots Of Questions

[Karen the Mouse]

Hello,

I'm new to this forum and have lots of questions.

First, a bit of history: I have a history of irritable bowel, including a four-year bout of really nasty irritable bowl 15 years ago. I always had tetchy bowels as a kid, easily irritated, but nothing severe. My bowels have been fairly happy for the last ten years.

I have some still-undiagnosed arthritis-like symtoms and Hashimoto's.

For about a year, I was on a starch-free diet as an experimental treatment for the ankylosing spondylitis I might have. The no-starch diet was, by definition, gluten-free. Three times during the no starch year, I experimentally went off of the diet and ate starch and gluten and my arthritis got worse. Once again, last fall, I reintroduced starches (but not gluten) for a couple of months, and then reintroduced the gluten. The arthritis didn't get worse this time with either the starch or the subsequent gluten addition.

Still, since I seemed to be responding to dietary changes and since ankylosing spondylitis is associated with bowel disease, I decided to try consulting with a gastroenterologist to look for inflammatory bowel disease and/or celiac. I never actually got to see His Holiness, the gastro, but was permitted to consult with his PA who knew next to nothing. Fortunately, I came in fairly well-informed. The gastro wanted to do a blood test for celiac, plus an endoscopy and colonoscopy. I knew enough to tell them I wanted to wait on the blood test and endoscopy until I had been eating gluten for more than three months, so those tests will be done in early April. The colonoscopy is in a couple of weeks.

I want to get answers and I want to do all of this right the first time. I've been messing around with the rheumatologists for 4 years on the arthritis and still am not getting anywhere. I don't want to mess around with the gastros also.

My questions:

1) I burp a LOT (as does my mom). Could this be a symptom of celiac?

2) The blood test the gastro ordered is procedure code 19955X, celiac disease com panel. Is that adequate? Should I request anything else?

3) I know that there is a new genetic test for celiac. It tests for a gene which you need to have to get celiac, but not everyone who has the gene goes on to develop celiac. Is that correct? The gastro knew nothing about it. Any chance of me getting that test done and would it be worthwhile?

4) Anything I should know about or be sure is done or not done in the endoscopy and colonoscopy?

I'd appreciate any help anyone can give me on this.

Karen

[Karen the Mouse]

I hope no one is offended if I bump this up, but I don't want it to be missed and would really appreciate some help with my questions.

Thanks,

Karen

[rinne]

Hi.

Questions:

1) I burp a LOT (as does my mom). Could this be a symptom of celiac?

2) The blood test the gastro ordered is procedure code 19955X, celiac disease com panel. Is that adequate? Should I request anything else?

3) I know that there is a new genetic test for celiac. It tests for a gene which you need to have to get celiac, but not everyone who has the gene goes on to develop celiac. Is that correct? The gastro knew nothing about it. Any chance of me getting that test done and would it be worthwhile?

4) Anything I should know about or be sure is done or not done in the endoscopy and colonoscopy?

Burping could be a sign of celiac but people burp for many reasons, it is a sign that your digestion is not working.

A simple tip for your digestion is eating just a little finely grated fresh beet with lemon juice and flax oil with your meals.

Someone else will have to help you with testing.

Google endoscopy and colonoscopy risks, there are reasons to have them done but I think it is important to understand there may be other strategies for diagnosis and that they may result in other problems. It is known by Crohn's / Colitis patients that some have flares after a procedure. I have a friend who had his bowel perforated and has suffered a series of infections since. It ruined his health which was already fragile when he went in for the test.

Before my digestion collapsed I was having severe back pain and wondering about AS, as long as I follow the Specific Carbohydrate Diet I don't have arthritic pain. I have osteo-arthritis in my right hand, knees and left hip.

I hope you get the answers you need soon.

[Karen the Mouse]

Thanks for the response.

Interesting about the beet, lemon and flax. Do you know how it works?

The no starch diet seemed to help me at first, but now I'm the same off of it as I was on. It's confusing. I'm glad the specific carbohydrate diet is helping you. Sometimes it amazes me what a difference diet can make.

My mom burps like crazy and she has bouts of diarrhea too.

The risks of the colonoscopy and endoscopy are a bit worrisome. I have TMJ and I'm really worried about the endoscopy flaring it up. I've talked to the nurse about it already, but she didn't seem to know much about it.

Karen

[rinne]

Here is a Open Original Shared Link to some information about that. My understanding is that HCL is made from beets so by eating them fresh you are getting the benefits directly.

I know when I had my CT scan I was told it was nothing to be concerned about but I suffered for months after it. I didn't drink the contrast as my mother had reacted to it, apparently it kills 2 in a 1000 so I wonder if they amped up the radiation.

There are some on this board that can speak to positive experiences with the medical profession, I am not one of them.

It is curious that diet doesn't seem to be making a difference at this point. I am wondering if you are on any medication or whether you use Metamucil regularly? If that is too personal, please excuse me.

[happygirl]

1) I burp a LOT (as does my mom). Could this be a symptom of celiac?

It can be for some.

2) The blood test the gastro ordered is procedure code 19955X, celiac disease com panel. Is that adequate? Should I request anything else?

The tests that encompass the full panel are:

tTG IgA, EMA IgA, AGA IgA, AGA IgG, and total IgA. The most sensitive/specific are the tTG IgA and EMA IgA, but they have to be run in conjunction with the total IgA.

3) I know that there is a new genetic test for celiac. It tests for a gene which you need to have to get celiac, but not everyone who has the gene goes on to develop celiac. Is that correct? The gastro knew nothing about it. Any chance of me getting that test done and would it be worthwhile?

Not necessarily a new test, but the genes that are related to Celiac are HLA DQ2 and HLA DQ8. About 95%-98% of those with Celiac have one or both of the genes. about 30-40% of the American population has one/both of the genes, and only 1 in 133 have Celiac - so just having the gene does not mean you have Celiac. However, not having the gene(s) makes it increasinly less likely (but not impossible) to have Celiac. Info on the genes: Open Original Shared Link

4) Anything I should know about or be sure is done or not done in the endoscopy and colonoscopy?

Make sure that the take multiple biopsies in multiple places, as Celiac damage can be patchy.

[Karen the Mouse]

Oh, it's the enzymes in the foods; they help with digestion.

When I first started the diet, my arthritis improved, but not all the way. When I went off the diet, I didn't get worse.

Zounds!! 2/1000 die from the CT scan?! At least I'm not getting that done.

As far as meds go, I take Wellbutrin and Levoxyl. I don't take Metamucil, though I do eat a very high fiber diet. I have 2-3 large bowel movements a day, but not diarrhea.

Karen

[Karen the Mouse]

That's good to know. I'll ask about the multiple biopsies.

Do you think the blood work I'm getting done is adequate?

Karen

[happygirl]

Without knowing the tests ordered, its hard to say. You could call the office and ask which specific tests that comprise the panel.

[rinne]

Oh, it's the enzymes in the foods; they help with digestion.

When I first started the diet, my arthritis improved, but not all the way. When I went off the diet, I didn't get worse.

Zounds!! 2/1000 die from the CT scan?! At least I'm not getting that done.

As far as meds go, I take Wellbutrin and Levoxyl. I don't take Metamucil, though I do eat a very high fiber diet. I have 2-3 large bowel movements a day, but not diarrhea.

Karen

I wonder if you had a chance to heal when you were on the no starch diet, that is the theory behind the SCD, starve the bad bacteria, repopulate with good bacteria and the gut will heal.

I suspect that there are many who are intolerant to gluten because of a history of antibiotic usage, in other words not celiacs but gluten challenged.

It appears that your medication wouldn't have an effect on digestion although I know little really.