Endoscopy 6/19

[FlyGirl]

I was gluten free from 2/1 until last Wednesday night. This chunk of time convinced me that gluten is a problem (that and 3 elimination diet challenges). Antibody blood work was negative last fall, however last Wednesday my GI guy convinced me to do the endoscopy for the 'official' diagnosis. His argument focused on appropriate ongoing health care, dealing with insurance (get a diagnosis, stay off gluten for however long it takes to prove that you are symptom free to prevent future exclusion of complicatons) and clear diet guidelines (if it isn't celiac it might be worth the consequences sometimes to have pizza). But maybe he just has kids in college!

Adding gluten brought back symptoms immediately, but what are the odds it is enough to ensure that if this is celiac that there's a decent chance of a 'lucky' biopsy? I don't personally care whether it is or isn't celiac, but right now the preferred outcome would be a definitive diagnosis. If it is celiac, I'd like to get a positive test.

Headaches, nausea and general malaise returned post haste. However in order to do this at all I needed to ramp up slowly and I'm not yet at the point of having the excruciating belly aches from my past. After just 4 days I'm pretty much slowed down to half speed with constant headache, ridiculous anxiety fits, numb feet, and a constant desire to eat. But I have yet to have one of my famous belly aches.

Novelty question: One thing that made me more concerned about a diagnosis was the mention of celiac liver issues. Did anyone else have pain in the area of their gall bladder? I actually had my GP do a sonigram a couple years ago because I was having pain just below my lowest rib on the right side. Gall bladder checked out as fine. However I hadn't really noticed that this pain had gone away until it came back first thing upon eating gluten again.

Opinions please!

[lizard00]

You know, I'm not sure that 2 weeks will do enough damage. I had been gluten-free 6 months and my GI wanted me to eat gluten for a month for an EGD. I'm not sure even sure a month would be enough. And then figure in 22 ft of small intestine, and the chances they would pick the right spot to biopsy... I wasn't up for that, I finally feel better. Why start over again? He was the same though, official dx for continuing health care, blah blah. We settled on the genetic test. He said that if that came back positive and with my symptoms being resolved on a gluten-free diet, he would feel comfortable making a dx. Maybe you could discuss that with him? He still wants to do an EGD to make sure there is no residual damage or anything else going on, but that's a few months away. And I also had negative blood work.

Gluten to a celiac is truly poison. It can affect any body system. So, if you find that gallbladder problems resolve on a gluten-free diet, or anything else, than it's pretty safe to say that gluten was the cause. The list of symptoms is over 200. When you are not disgesting your food properly, it can affect any and every thing.

[jerseyangel]

Hi and welcome!

The rule of thumb for a gluten challenge is 3-4 slices of bread a day for 3-4 months (at least).

[nora-n]

My daughter had this same pain, and when she had the endoscopy she felt them taking the biopsy the same place. She thinks it is teh first part of the duodenum.

Her biopsy after sixx weeks back on gluten was negative, but the intestines looked highly abnormal and looked like celiac.

My biopsy after five weeks back on gluten was negative too.

She did get a positive diagnosis because of the clear-cut symptoms off and on gluten. Her blood tests were negative too. we get lots of money from the health system here if we are diagnosed, so it is strict to get a diagnosis. But shee got one anyway. (because of symptoms, and perhaps because they could see the intestines were abnormal)

BTW, I felt hungry and wanted to eat all the time too back on gluten.

Maybe you should stay longer on gluten, and if the biopsy is negative, you should continue and have another biopsy after more weeks. I should have continued because my symptoms did get worse after the six week mark, I think. Instead they proclaimed they had proven me not to be celiac, what a nonsense. I even have DH symptoms and they refused to send me to a dermatologist. use hydrocortisone cream on the DH they said.

nora

Norway

[FlyGirl]

Thanks very much for the input. Sounds like two weeks are not long enough at all! I can't imagine putting up with this for months, though.

I'm still not up to 3-4 slices of bread per day. I did something close to that when I did my initial gluten challenge and completely took myself out. Spent most of a day on the couch due to belly pain followed by migraine.

My Dr actually counsels against the genetic test due to possible repercussions in the insurance game. He also seems pretty saavy about this stuff and actually didn't recommend that I go back on gluten based on how strong my reaction was on the challenge. I just thought that I should give it a try. Hmmmm, the kids in college theory is still valid.

We'll see what happens next week.

[hilwacat]

Two weeks may be enough. That is what was recommended to me as well. I had positive blood work and have been gluten-free for 10 days. I asked to have a biopsy done as well to confirm, and the endoscopy doctor said 1 slice of bread for two weeks would be plenty to have conclusive results. But then again, it may just be because I have been only been gluten-free for a short period.

[nora-n]

It is more like 6-12 slices of bread, if one does the math.

the 10 days off gluten was the reason hte biopsy was still positive, I think. 3 months will make the biopsy likely inconclusive and then two weeks wuould usully be way too short.

They are looking for total or partial villous atrophy or distinct shortening and flattening of the villi, the most severe forms of damage from gluten, and when going glu-free the intestines most often quickly start to heal.

The wxception is refractory celiac disease and they have villous atrophy even after a year gluten-free. They have a much higher chance of getting lymphoma and dying.

nora

[Fiddle-Faddle]

Two weeks may be enough. That is what was recommended to me as well. I had positive blood work and have been gluten-free for 10 days. I asked to have a biopsy done as well to confirm, and the endoscopy doctor said 1 slice of bread for two weeks would be plenty to have conclusive results. But then again, it may just be because I have been only been gluten-free for a short period.

Sorry, I think your endoscopy doc was wrong. Two weeks isn't even close to being enough to do measurable damage, to your villi, and it might not even be enough to show up on blood work. It took you a lifetime to get to this point, didn't it? 3-4 MONTHS of 4 slices of bread a day is what I have read as being the recommendation. Most people who did less basically had negative results,b ecuase there was no damage.

I think the whole thing is a crock, anyway. We're supposed to purposely damage our intestines so that the doctor can tell us not to eat gluten? We already KNOW that gluten is causing our problems!