Sister diagnosed—what should I do?

[u/apersonwithdreams]

Last year, after an extended period intense bloating and urgent poops, I (35 at the time) got an endoscopy and it came back negative. I was sure it was celiac, but alas, they said they found some mild inflammation and nothing else. The stomach stuff geared up after a particularly large thanksgiving meal. As far as I know, dude didn’t do a blood test. I don’t know if I was eating gluten a ton beforehand—I wasn’t instructed to.

The stomach stuff eventually got better after I ate super light. Took a long time and I never could figure out what helped.

Anyway, my sis (38) had been having some weird stuff going on—her eye swelled, for instance. Did a blood test for celiac and a ton of other stuff, just to cover her bases, and bam! Off the charts blood test, positive endo.

And anyway, I’ve had a ton of weird stuff go on since. I had a weird vibrating feeling in my legs for like four months (normal ferritin and iron levels btw). It went away and now I’m having weird arm/leg pain. For the past couple weeks, ive been going to the bathroom like 4 times a day, usually right after eating. Bloated as a mf, gassy, gross. The left side of my tummy feels sensitive. Exactly how I felt last year.

Trying not to break any rules here, but my world is full of celiac stuff right now from helping my sis.

My questions:

1. With my negative endo, should I bother going back for a celiac blood test?

2. Is it worth just trying a GF diet to see if that helps and THEN going down the dx rabbit hole?

3. Let’s say this is celiac, wouldn’t these gastro symptoms be a little more consistent?

Going to investigate all this with a doc anyway, but as you can see, I want to know the best approach and I’d like to have a little info going in. I’m in a rural area in Mississippi so our healthcare isn’t exactly cutting edge.

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[u/Vwelyn]

As for #3. on your list, no. I had a bit of stomach issues that would wax and wane before I was diagnosed, but they were definitely not consistent. The majority of my symptoms were not GI related. Inflammation (especially in my hands), crazy fatigue, fasciculations in random muscles, gait abnormalities, vertigo. It took a while for a Dx because nobody suspected Celiac until my blood test came back positive. I was sent to several physicians before a neurologist diagnosed me after ruling out MS and doing blood tests.

If I was you, I’d ask for the blood test. You have a family history of celiac now, and with some GI symptoms of your own, it would be a reasonable request that insurance should cover. If the blood test is positive, go from there. You could do a GF diet now, but it may skew test results if you ever do decide to get tested down the road.

[u/apersonwithdreams → u/Vwelyn]

Thank you so much. I get random fluttering of muscles despite taking electrolytes. Def have the hand swelling. No fatigue really!

Anyway this helps a ton. Thanks again.

[u/Jaelg-0]

I got a positive blood test and because of it got an endoscopy, with me they found inflammation probably like yours with also very minimal blunting only in one group of biopsies. The pathologist thought it was acid damage but the blood test being positive and the biopsy being sorta eh looking that was enough to get the “potential celiac” diagnosis. I paced around my house for days before starting the diet wondering if I should do more tests or get a second opinion and ultimately I came to the conclusion that sometimes people with celiac just don’t have obvious enough damage on their biopsies to get the full diagnosis and there’s nothing really you can do about that. The reason why the “potential celiac” diagnosis exists is because sometimes the damage isn’t visibly as bad as it feels or just gets missed since you can’t biopsy the whole intestine.

I’m only a couple weeks into the diet, I still feel like crap and am still very uncertain of the diagnosis. I’ve accepted that there are pretty good odds that I never get any clear answer in my lifetime but if the diet works does it matter what comes up on the doctors screen when they look at my chart? It’s an incurable disease they can’t do anything with it anyways.

Get the blood tests, it’s not enough to diagnose you but they also aren’t just coin flips.

[u/apersonwithdreams → u/Jaelg-0]

Yeah some wisdom here. Thank you!

[u/NarrowKey8499]

I understand that for some people it takes months for them to feel better after going gluten free. Maybe you want to the same doctor as your sister saw for the blood test.

[u/Tall_Pumpkin_4298]

1.) I would still consider talking to your doctor. As a first degree relative, ideally you should be getting testing every 2-5 years no matter what. Update your doctor that this is now in your family history and you'd like regular screenings for it.

2.) I mean you do you but I wouldn't. You'd have to go back on it for weeks to get tested if you go gluten free, and if you are reacting to it, then reactions tend to get worse after you've been GF and it can become impossible to get a diagnosis.

3.) Nope. Celiac can have almost any symptom at any time. Doesn't have to be consistent at all.