Dr. Hive... Please join my diagnostic team. :-)

[amo_mea_filiis.]

Update...

 

Any new ideas?

 

Scope was negative. Gallbladder is functioning at about 60%.

 

Still nauseous with most foods. Weight, while gross for me, has been consistent.

 

My sleep apnea is treated with CPAP and I have great daily numbers.

 

 

 

 

Original post----------

 

My GI issues are getting worse. Nothing is really consistent so I had put off getting things checked out and previously the dr didn't seem to take things seriously.

 

** I am not and cannot be pregnant! Last "relations" was in November; several periods since.

 

I had some serious weight gain (98lbs to 164lbs in 3 years) that seemed to level off. I hover around 150. Cutting gluten will initially show weight loss, but it stops around 140 and I go back up.

 

My thyroid numbers have always been extremely normal; 1. something. However, the TSH was showing an upward trend, dr tried meds, I felt no different and stopped. My last thyroid check, TSH was lower than it had been and T4 was higher, so a tiny bit of thyroid could be a part here. But with a TSH of under 2, it can't be that bad.

 

I have nausea when eating, to the point that I'll have to spit out what I'm chewing or risk vomiting. I'm getting to where I'm on the verge of nausea all day.

 

I have "issues" with gluten (waiting for biopsy to r/o celiac).

 

I'm distended and bloated soon after eating and I can't eat very much (like a single hamburger with a piece of lettuce and bun is my limit). I even feel bloated and gassy after a single cup of coffee.

 

I have occasional delayed gastric emptying (food is sometimes still in my stomach when I get up in the morning, and we had dinner between 4-5 the evening before). Yesterday's scope showed no obstructions.

 

My vit d is bouncing all over the place.

 

Food does "stick" in my esophagus, but goes down with an extra swallow.

 

When food comes out the other end, it varies in all the gross details. It swings both ways.

 

I had a ton of bloodwork. CBC showed I'm fighting something which we presumed to be my messed up ears. Epstein Barr was positive but not active. D was lower but not technically deficient (34). Everything else was normal.

 

Abdominal ultrasound (done because of pain in upper right quadrant when dr pushed) was normal.

 

Upper endoscopy yesterday was visually normal, but we're waiting on biopsies.

 

GI wants a gastric emptying study. While I don't have a problem with that, it seems wasteful. I know I have some occasional issues with delayed emptying, but it's not consistent and I could track it. I was thinking a gallbladder function test may give more useful information.

 

If the biopsies all come back normal, then I'm stuck and don't know what to push to look into. If no celiac, it stays gluten "issues."

 

If celiac comes back positive, it still doesn't explain my symptoms when off gluten.

 

Should I push for the gallbladder test? Any other ideas?

[East Coast Sue]

My dh has had several of those symptoms and he was diagnosed with IBS.  He can not eat red meat, bread, and several other things that really set him off.  The hard thing is that some of the foods which cause problems for him take several days to present with symptoms- which made him wonder which foods were really causing his problems.  He feels much better when he limits his diet to eggs, fish, brown rice, quinoa, grapefruit, and a few other foods.

 

I hope you get some answers and relief from your symptoms!

[Acadie]

Have you been tested for H. pylori?  

 

Are you able to take probiotics?  Sometimes they can help GI stuff even without knowing what's going on.  We're having good luck here with two--Kirkman's CD-Biotic plus Align.

 

Also hoping you get some clarity and feel better soon.

 

Amy

 

 

[amo_mea_filiis.]

I've considered ibs, but since it's a diagnosis of exclusion, I want to get a ton more ruled out before considering it.

 

H. Pylori twice. Once through bloodwork (negative) and the gi took samples yesterday to test.

 

GI agreed to hida scan and holding off on gastric emptying study. He says I'll probably need both, but he's ok waiting for the gastric emptying study.

[Chris in VA]

No diagnostician here, but I agree it sounds like a combo of thyroid, gallbladder, gluten sensitivity and maybe IBS. Can Epstein-Barr have those side effects, too? IDK anything about it.

 

Sorry. Many hugs.

 

Edited to add--Ok, I realize that sounds kinda stupid. What I'm saying is just maybe there isn't one cause for everything.

I do know stress can make gastric/digestive issues worse. I had some anxiety in Israel, combined I think with picking up some bacteria in the (filthy) Sea of Galilee. Had issues for weeks after--yuck. Maybe your issues are exacerbated by the stress of dealing with your kiddos (not sure if that's still the case, just recalling some stressful posts re same). Again, many hugs, and hope you figure things out. You are certainly being proactive about it--good for you!

[amo_mea_filiis.]

Thanks. :)

 

I agree it seems like a mix of stuff. So far everything has come back normal or normal enough and then they don't look anymore. I'm pushing this time!

 

Life with my two is always stressful, but it's life. I'm sure stress contributes, but I think it just adds to whatever is underlying.

[dbmamaz]

so, very expensive, but i found digestive enzyme helped me a lot esp with what comes out the other end.  I'm still having my share of issues, but it might be worth a try.  if the doctor proscribes it, you can at least pay for it w spending account?

[Annie]

I thought gallbladder while reading your post. A poorly functioning gallbladder seems like it could cause several of your issues.

 

It sounds very frustrating. Good luck!

[sassenach]

What's the longest you've ever stayed 100% off of gluten? And how diligent were you about hidden gluten?

[trulycrabby]

So your stomach it only bloated after you eat? Are there times when it is bloated but you are wondering why because you haven't eaten recently?

[amo_mea_filiis.]

When I cut gluten, I am good about it at home. Unfortunately, everyone else takes it as a challenge or takes it personal. I have gone several months very diligent.

 

The bloating and nausea are getting worse, sometimes without food or only with drinks (coffee, tea, even water) but I've been blaming that on all the gluten.

 

Today, I've had two cups of coffee and feel very full (but I also have my period). I know I should eat a little something, but blah! Lol. I don't want to.

 

Whatever infection showed on my bloodwork has to be related and maybe I finally managed to see the dr at the right time.

[mommymonster]

If the gall bladder test shows "normal" results, I would consider a full-on anti-inflammatory "diet," cutting out gluten at the same time. It seems as though you're feeling pretty lousy whenever you eat or drink. At that point, I would start looking into diet. The anti-inflammatory diet is gentle on the digestive system, and might give you enough of a "reset" to feel better. 

[amo_mea_filiis.]

I'm totally expecting the biopsies and HIDA scan to come back normal.

 

I'll try any diet or supplements that I can afford.

[trulycrabby]

I think in addition to your GIdoc you should see your obgyn and get a pelvic ultrasound to rule out ovrian cysts or an ovarian mass crowding your intestines and causing these issues. Unlikely, but if the GI symotoms don't resolve or keep getting worse, you should consider getting this done.

 

I hope you feel better very soon!

[amo_mea_filiis.]

My regular doc does the girlie exams. I just had one. Would she have felt anything?

[PinkyandtheBrains.]

My regular doc does the girlie exams. I just had one. Would she have felt anything?

Not necessarily.

[amo_mea_filiis.]

GI wants to do HIDA and gastric emptying (they just called again about it). So I'm going to schedule that later today.

 

I called my dr's office to see about looking into cysts. They're going to call back.

[Ann.without.an.e]

With celiacs, once you remove the gluten you have to keep it out 100% of the time and then your body can begin to heal.  It is a process and I have heard that some are GF for a year before they feel 100% better.  

[amo_mea_filiis.]

With celiacs, once you remove the gluten you have to keep it out 100% of the time and then your body can begin to heal. It is a process and I have heard that some are GF for a year before they feel 100% better.

If the biopsy does come back positive for celiac, I'll be able to cut it and keep it out. It's this non-specific-gluten-issue that messes me up.

[Ann.without.an.e]

If the biopsy does come back positive for celiac, I'll be able to cut it and keep it out. It's this non-specific-gluten-issue that messes me up.

 

 

Oh, I know....it is so much easier to cut it for good when you know for certain that you have no choice.

[An Unexpected Party]

Many of your symptoms sound very similar to how I feel and what I experience when my stomach is not emptying. (Gastroparesis) Something tends to set it off - and the symptoms sort of blend and look a lot like other things, so it's tough to find the chicken vs the egg in this sort of thing. (We eliminated celiac as a problem, but wheat is an irritant.) I have found that eating a gastroparesis diet  helps a great deal with my symptoms.  It's a pretty bland, gentle diet at first, designed to get nutrients into you first and then work you up to eating a wider range of foods. I do not have to stay on it year-round, only when I'm having issues. 

 

For what it's worth, I also have low vitamin D, acid reflux issues, and a thyroid level that requires treatment, but not by a lot.  Probiotics have helped, too. 

[amo_mea_filiis.]

No regular meds. I do take vit d. No regular reflux symptoms. Occasional, but not often, and not recently since my portions have been cut. No coughing without obvious sickness.

 

My stomach not emptying doesn't seem to happen often.

[chelsmm]

Sorry you are going through all of this. I went through a year of testing and all I ended up with was a dx of IBS. It can be so frustrating. Have you considered an elimination diet? The Whole 30 might be helpful to you. You can google it and check it out. It's a strict elimination diet for 30 days with a gradual reintroduction of foods. I found that two years of gluten free and dairy free eating, and I'm mostly better. I can tolerate small amounts of gluten, but that is just in the past week. I still can't tolerated dairy at all. I was strict for two years though. Anyways, it might be worth a try. Good luck.

 

Oh, I do supplement with Carlson's vit D

[amo_mea_filiis.]

How long do the results from a scope usually take? I know he was looking for celiac and eosinophilic diseases, and h pylori. I'm not sure what else he was looking for.

 

I called the GI's office and he agreed on the HIDA scan, but also really wanted the gastric emptying study. Both are scheduled for Friday.

[amo_mea_filiis.]

Updated in first post.

[Seasider]

My docs all say the new common standard for D is more like 50, so they would consider your 34 low. I'd start with a good D3 supplement.

 

Have you tried ruling out dairy?

 

Sorry you haven't gotten any clear answers, that's got to be extremely frustrating.

[grantmeawish]

Try to go see a Registered Dietitian and see if they can help. One with a lot of GI experience. We use to do case studies like this in college.

[Pawz4me]

The reduced gallbladder function could certainly be responsible for the nausea.  And probably the bloating/gassiness, too.

[amo_mea_filiis.]

My doc agreed that the d is low. It didn't want to budge, so after a very high supplement dose, it was 94 and the summer wasnt even over yet (still plenty of natural D)! Only 4-5 months passed and it dropped back into the 30's. I'm supplementing again, but I don't know how to keep it at a nice level.

 

I have not considered dairy, but can drink milk and eat ice cream with only very minimal symptoms.

 

I don't have access to a registered dietician. Feel free to study me!

 

Is 60% even considered reduced function? Eating a low fat, simple carb diet should so a difference if that's a part, right?

[Pawz4me]

My doc agreed that the d is low. It didn't want to budge, so after a very high supplement dose, it was 94 and the summer wasnt even over yet (still plenty of natural D)! Only 4-5 months passed and it dropped back into the 30's. I'm supplementing again, but I don't know how to keep it at a nice level.

 

I have not considered dairy, but can drink milk and eat ice cream with only very minimal symptoms.

 

I don't have access to a registered dietician. Feel free to study me!

 

Is 60% even considered reduced function? Eating a low fat, simple carb diet should so a difference if that's a part, right?

 

Oh, sorry.  I took your update to mean that your gastro doc had informed you that your gallbladder was only functioning at 60%.

 

If that's the ejection fraction from a HIDA scan, then no, I don't think that's considered reduced functioning.  I believe that needs to be below 40 percent to be considered low.

 

I control my low-functioning gallbladder with a low fat, high fiber diet.  Simple carbs generally means sugar, white bread, white rice, etc.  You want complex carbs (brown rice, veggies, whole grains, etc.).

[gaillardia]

I was told I have gallstones and upon reading about that in my herbal healing books I have tried eliminating a few things that were probably causing problems and I feel better and have lost a few pounds. I quit drinking soda, I don't eat hardly any red meat (small amount once a week), not much onion, take it easy on legumes, I don't eat a lot of sweets, I don't eat or drink dairy products, except maybe a small amount of cheese or a little bowl of ice cream once in a while. Thank goodness you had no obstructions, my recent malady.

Like Pawz4me said, complex carbohydrates so your body has to work on what you eat instead of taking in already processed foods.

Watch serving sizes, most of us are not supposed to be eating the amount listed on the serving size, 2000 calorie diet.

You could be gluten sensitive, not necessarily registering as allergy

What about your liver?

Sorry you are having a lousy rotten time.

[amo_mea_filiis.]

Ejection fraction, yes. Wasn't sure of the term. I know 35% is the cut off. 60% is quite a bit above that. I doubt gallbladder is playing any part here.

 

Liver labs were normal.

 

I know that I have "issues" with gluten, but it's so hard to stay gf without much to back it up medically. I also have an issue with onion or rice, but it's minor, or just less annoying than the other stuff. Usually I cut gluten and swear I'll never eat it again. Then a little slips in and it's not too bad and a little more until one day I'm wondering what the heck is wrong!

 

I did just go food shopping and will be gf again.

 

At the moment I know my portions are normal and possibly even small because everything just makes me so sick. I physically can't eat a lot.