Testing tomorrow - what exactly do I ask for?

[cyclinglady]

9 hours ago, ByeRye said:

Finally...

Component	Your Value	Standard Range
TISSUE TRANSGLUTAMINASE IgG	0.37 Index	<=0.90 Index
Tissue transglutaminase IgA	0.30 Index	<=0.90 Index

 

 

Negative (remember, I am not a doctor).  You can try for a GI consult and ask for the full panel, but on paper, you look good.  No documented autoimmune issues, not anemic at this time (I think you are taking iron supplements), you do not appear to be malnourished, no family history......hard to make a case.  Celiac disease symptoms are like so many other symptoms for many illnesses.   It also seems by your posting that you have been gluten light and that can impact tests.  Keep all labwork in your possession (e.g. Does your current doctor know your ferritin was a 2?) 

Risk factors:

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Maybe your doctor will order a gene test based on the Mayo Clinic Algorithm:

Open Original Shared Link

You can also consider a gluten free diet for six months because there is no test for a gluten sensitivity.  

If you can get a GI consult, consider delaying it for three months and eat gluten 1 to 2 slices of bread a day) for three months (throw in some sourdough and donuts for me) and lay off all supplements prior to the test.  

I am sorry that you are in diagnostic limboland.  ☹️  

[ByeRye]

Cyclinglady, I wanted to thank you for all your helpful and informative comments.

Doc suggested I try the Low Fodmap diet. Haven't had gluten since the day of the blood test, and cut out lactose at the same time. No problem there. 

Already didn't eat quite a lot of the high fodmap foods anyway, but the ones I'm still struggling with losing are beans, onions, and garlic. I honestly don't even know how or what to cook without garlic or onion.  So that part of it has been quite difficult. When it comes to those three things I am just trying to cut back, since eliminating entirely was so overwhelming. 

There are definitely some changes I notice. I've been very tired. It's improved the last couple days. All last week I was practically comatose. Bloating is greatly improved. When I notice I am bloated it isn't painful. Which is a weird experience. Before bloating always equated pain and tremendous discomfort. No more stomach cramping. Basically all the pain is gone. It's also a new experience to eat and feel full, but it's a comfortable full, not a "omg I'm going to split open" full, even when eating the same volume of food. Before I'd eat until I was satisfied, but then after I was long finished eating my stomach would just feel fuller and fuller until it hurt. That isn't happening anymore.

So anyway! I'm still not entirely sure what to make of everything. I feel better than I had, but seems like I should feel better than I do. 

[Jmg]

Hello

I had a similar experience to you, a 'Eureka moment' a big improvement after removing gluten then a diagnostic journey that ended in an unexpected negative celiac test. After my scope I went gluten free for good and I'm never going back.

I saw you were going to do the same then this:  

On 6/13/2017 at 6:16 PM, ByeRye said:

Doc suggested I try the Low Fodmap diet. 

I think your Doctor seems smart, I've met a few who probably wouldn't know what Fodmaps are, but they're right that a recent study by Monash speculated that they were the likely cause for some IBS like symptoms in some patients that tested negative for celiac. So I can certainly see your Doc's reasoning and would be loath to seek to undermine it, even if some random bod on the web could do such a thing!

However...

I just wanted to relay my own experience. Resolution for me has come about through avoiding gluten. I know categorically that fodmaps aren't an issue, I eat a very high fodmaps diet, not deliberately just because I really like so many of the foods that are high on the list:

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I also know that my problem isn't solely related to wheat, another suggestions sometimes offered for Non Celiac Gluten Sensitivity. In my case I react to barley for instance as well. I'm just a little concerned that if you cut fodmaps and gluten at the same time you may draw a false correlation between symptom resolution and fodmap avoidance and wind up on a more restrictive diet than you need to! For me, thankfully, as long as I avoid gluten a big list of problems goes away and I get to keep enjoying as many onions, garlic, apples etc as I like. 

Best of luck

Matt